Aa
Ongoing Validation
The topic of being "validated" has come up frequently as of late. I want you to know that it's something that I need, too. Since the beginning of this forum I have been very local about certain topics and little by little the mainstream of MS Experts has given me validation that I am right.
One of those thopics is that the MRI is only an approximate reflection of what is actually going on in the MS body. Still, we all have looked for evidence on the MRI when our symptoms take a nose dive. We, recently I have had the horrendous incontinence, a slowed gait, and difficulty rising out of a chair unaided by my hands. All of this despite being more active than I have been for 5 years or more.
Last Saturday I had another full 3T set of MRIs. Today I got a call from my neuro's Nurse Practitioner. He brought her on and clearly has taught her his philosophy, since the other doc left. She called me today to tell me that my MRIs are unchanged. (She reads the MRIs herself!) Now, since they found my first 7 lesions in 2007, there has been no appreciable change, and I have been off a DMD for over a year. Even my Urodynamic studies were normal.
I find it totally frustrating that my testing does not show the changes when it feels like I am going downhill paralleling Bodie Miller. My Uro-G was not at all put off by the normal testing. She said that the MS bladder doesn't behave in ANY predictable way. The NP today said that, although they were looking for a new enhancing lesion - especially in the thoracic spine - to account for my worsening urinary problems, she wasn't bothered or made suspicious by not seeing one. She said the MRI is an inaccurate tool. It doesn't show "most" of what is going on in the body with MS. When I commented on the fact that my MRI hasn't changed in years, she said, "Well, it does show that you have significant spinal cord disease and we know that existing lesions continue to cause symptoms and often worsening symptoms without ever changing in size."
I think it is important to keep reminding ourselves that the truth of our disease lies in our experience with it - not in some external test result. Our symptoms determine a relapse NOT the appearance of the MRI. Our symptoms determine the stage of our disease, NOT the MRI. Our symptoms determine our suffering - NOT the MRI.
We must continue to reassure and teach people that our doctors must LISTEN to us and LOOK at us. And, above all, they must believe us. If they don't, we need to search until we find a doctor that does. That is why many of us are on our third, fifth, or tenth docs.
Quix
One of those thopics is that the MRI is only an approximate reflection of what is actually going on in the MS body. Still, we all have looked for evidence on the MRI when our symptoms take a nose dive. We, recently I have had the horrendous incontinence, a slowed gait, and difficulty rising out of a chair unaided by my hands. All of this despite being more active than I have been for 5 years or more.
Last Saturday I had another full 3T set of MRIs. Today I got a call from my neuro's Nurse Practitioner. He brought her on and clearly has taught her his philosophy, since the other doc left. She called me today to tell me that my MRIs are unchanged. (She reads the MRIs herself!) Now, since they found my first 7 lesions in 2007, there has been no appreciable change, and I have been off a DMD for over a year. Even my Urodynamic studies were normal.
I find it totally frustrating that my testing does not show the changes when it feels like I am going downhill paralleling Bodie Miller. My Uro-G was not at all put off by the normal testing. She said that the MS bladder doesn't behave in ANY predictable way. The NP today said that, although they were looking for a new enhancing lesion - especially in the thoracic spine - to account for my worsening urinary problems, she wasn't bothered or made suspicious by not seeing one. She said the MRI is an inaccurate tool. It doesn't show "most" of what is going on in the body with MS. When I commented on the fact that my MRI hasn't changed in years, she said, "Well, it does show that you have significant spinal cord disease and we know that existing lesions continue to cause symptoms and often worsening symptoms without ever changing in size."
I think it is important to keep reminding ourselves that the truth of our disease lies in our experience with it - not in some external test result. Our symptoms determine a relapse NOT the appearance of the MRI. Our symptoms determine the stage of our disease, NOT the MRI. Our symptoms determine our suffering - NOT the MRI.
We must continue to reassure and teach people that our doctors must LISTEN to us and LOOK at us. And, above all, they must believe us. If they don't, we need to search until we find a doctor that does. That is why many of us are on our third, fifth, or tenth docs.
Quix
It is quite possible you have multiple sclerosis AND another disorder. That becomes very complicated, but I hope you keep researching your symptoms and try to connect the dots.
Hi Q,
it's an interesting thread for everyone on this forum both diagnosed and in limbo. Everyone needs validation.
Nobody wants to get worse but we need to see "proof" of what we are feeling. If we feel that we have got worse then we most likely have got worse but obviously MRI does not see all the lesions.
My neurologist tells me every visit that I have lesions that are not showing up on MRI, he is definite about it, he tells me that MRI is only part of the diagnosis process, a tool that helps them but does not and cannot see everything, especially with lesions in the thoracic, but the spinal cord in general is not easy to image.
Also in my recent research it really can depend on how the radiographer takes the slices, saggital view is better for the spinal cord and a good radiographer should use this sequence as well as the other sequences etc. All MRI should be done using MS protocol.
Zack's Mommy,
My neurologist told me recently that he has to be very careful not to blame every symptom on MS and to always remain objective as if he didn't he could overlook something serious or something that perhaps could be treated differently. He said a MS specialist it is very easy to blame everything on MS because it can or has the ability to affect so many things but he said it pays still to look at all options, which is true. Just wish my GP had the same philosophy.
Still wanting validation, which many people don't understand,
Cheers,
Udkas.
it's an interesting thread for everyone on this forum both diagnosed and in limbo. Everyone needs validation.
Nobody wants to get worse but we need to see "proof" of what we are feeling. If we feel that we have got worse then we most likely have got worse but obviously MRI does not see all the lesions.
My neurologist tells me every visit that I have lesions that are not showing up on MRI, he is definite about it, he tells me that MRI is only part of the diagnosis process, a tool that helps them but does not and cannot see everything, especially with lesions in the thoracic, but the spinal cord in general is not easy to image.
Also in my recent research it really can depend on how the radiographer takes the slices, saggital view is better for the spinal cord and a good radiographer should use this sequence as well as the other sequences etc. All MRI should be done using MS protocol.
Zack's Mommy,
My neurologist told me recently that he has to be very careful not to blame every symptom on MS and to always remain objective as if he didn't he could overlook something serious or something that perhaps could be treated differently. He said a MS specialist it is very easy to blame everything on MS because it can or has the ability to affect so many things but he said it pays still to look at all options, which is true. Just wish my GP had the same philosophy.
Still wanting validation, which many people don't understand,
Cheers,
Udkas.
OH please don't give up..... I know what you are going through to a certain degree. When you do find a neuro doc they don't listen or don;t want to treat you. But please don't give up. Just 2 weeks ago I left my home just to make sure I did not take everything in the medicine cabinet because I am so tired of the runaround I am getting. But things do and will turn around. File for emergency medicaid and if your husband makes too much and he is not supportive then well maybe he needs to get on board or jump ship. Sounds like you have great kids. Utilize your support system you have.
Ok, I'm going to bite the bullet and ask for help....
I need a doctor/Nero who listens, communicates and
keeps records or knows where they are.
I have been pretty well bed fast since October 09.
I have had a positive attitude and have done things to help me regain mobility.
I couldn't feel either hand well enough to pick up things,
so told my kids where my drawing supplies were,
and I spent weeks teaching myself how to pick up things again.
When I was able to see well enough, I found simple memory games
and later MahJong memory game for short periods of time,
to help regain my short term memory.
I feel like I'm paying people big money to treat myself!
My local Doc put my meds together and they were approved
by doc 4.5.hours away except to up the dose.
I have bleeds off and on in the small veins of my brain.
Mris found I also have MS.
I lost mobility at the end of October last year.
I'm seeing a doc 4.5 hours for home.
He's suppose to be one of the best!
I have been lost between the cracks folks!
It seems that TWO different Doctors are competing for my case.
There is some mix up about whom I am to see and what test to have.
I can't seem to be found in the system they have.
I have different people calling telling me to be
different places, on the same day at times impossible to keep.
One person saying repeat some tests a third time,
others saying no, do not repeat those tests, but these!
I have been lied to, on different occasions to get me to take or
retake a test I knew I didn't need.
I called administration and they are trying to figure out what is gong on.
They weren't able to find any records kept on me at all until I
asked if I should give numbers off the bills I'm receiving.
I was told by the Administrator I spoke with NOT to repeat any further tests and
Not to keep any appointments until she can figure out what's going on.
She could find nothing stating I have CVMs.
She was alarmed when I reported the problems I had for a month after the tests.
Said I should not have reacted the way I did.And should have had more follow ups.
During my last tests my blood pressure dropped so low, the next thing I knew,
the people around me were scurrying!
I asked what was wrong and was told they needed to stop the tests
because I was going into cardiac arrest!
Oh really?
There is nothing on my record stating this!
I was allowed to rest a while from the tests that day,
then was talked into taking a pill I didn't want to take.
I was told I would not fall to sleep.
I told them I knew I would. I was assured no I would not!
I didn't trust anyone present.
I ended up taking the pill.
Woke up some time later with blisters all over my body.
I had to be lifted by the door man and sat in the car.
I could not think clearly at all.
We stayed in a motel not far from there because
my pain was so severe. and didn't feel I could ride 4.5 hours in the car.
My local Doc is frustrated because multiple efforts to get my records from this
place has produced no more then she knew in the first place.
I'm scare to go back, in fact after reading these posts, I'm not going back!
but I am told by my local doc there aren't any MS specialist in our area.
Please,
If any of you know of an MS specialist,
or a nureo with interest in MS ,
in Columbia SC help me!
My doc here says my other option is Georgia?
I really need something closer.
I lost my job and have a husband who isn't supportive.
We were separated for two years and he came back when I got ill and
lost my job. I get no money from him.
My children take me to my appointment and
are paying for these trips, and my hospital bills so I can continue to go.
My husband does buy my meds most of the time.
If not my son does.
I don't know where to turn....
I understand MS is a disease found up north where I'm from
But I know I'm not the only person in SC with MS and/or CVMs!
This is so crazy!
Tired of Docs and Neros
If I could, I'd just take my meds and forget it for a while!
I'm so tired of the crazy power struggle games.
Hey! Hello!!!
WE ARE REALLY SICK HERE!
THIS ISN"T JUST A TEST NEROS AND DOCS!!!!!
Weary, feeling a little unlucky right now LOL
NiCee
I need a doctor/Nero who listens, communicates and
keeps records or knows where they are.
I have been pretty well bed fast since October 09.
I have had a positive attitude and have done things to help me regain mobility.
I couldn't feel either hand well enough to pick up things,
so told my kids where my drawing supplies were,
and I spent weeks teaching myself how to pick up things again.
When I was able to see well enough, I found simple memory games
and later MahJong memory game for short periods of time,
to help regain my short term memory.
I feel like I'm paying people big money to treat myself!
My local Doc put my meds together and they were approved
by doc 4.5.hours away except to up the dose.
I have bleeds off and on in the small veins of my brain.
Mris found I also have MS.
I lost mobility at the end of October last year.
I'm seeing a doc 4.5 hours for home.
He's suppose to be one of the best!
I have been lost between the cracks folks!
It seems that TWO different Doctors are competing for my case.
There is some mix up about whom I am to see and what test to have.
I can't seem to be found in the system they have.
I have different people calling telling me to be
different places, on the same day at times impossible to keep.
One person saying repeat some tests a third time,
others saying no, do not repeat those tests, but these!
I have been lied to, on different occasions to get me to take or
retake a test I knew I didn't need.
I called administration and they are trying to figure out what is gong on.
They weren't able to find any records kept on me at all until I
asked if I should give numbers off the bills I'm receiving.
I was told by the Administrator I spoke with NOT to repeat any further tests and
Not to keep any appointments until she can figure out what's going on.
She could find nothing stating I have CVMs.
She was alarmed when I reported the problems I had for a month after the tests.
Said I should not have reacted the way I did.And should have had more follow ups.
During my last tests my blood pressure dropped so low, the next thing I knew,
the people around me were scurrying!
I asked what was wrong and was told they needed to stop the tests
because I was going into cardiac arrest!
Oh really?
There is nothing on my record stating this!
I was allowed to rest a while from the tests that day,
then was talked into taking a pill I didn't want to take.
I was told I would not fall to sleep.
I told them I knew I would. I was assured no I would not!
I didn't trust anyone present.
I ended up taking the pill.
Woke up some time later with blisters all over my body.
I had to be lifted by the door man and sat in the car.
I could not think clearly at all.
We stayed in a motel not far from there because
my pain was so severe. and didn't feel I could ride 4.5 hours in the car.
My local Doc is frustrated because multiple efforts to get my records from this
place has produced no more then she knew in the first place.
I'm scare to go back, in fact after reading these posts, I'm not going back!
but I am told by my local doc there aren't any MS specialist in our area.
Please,
If any of you know of an MS specialist,
or a nureo with interest in MS ,
in Columbia SC help me!
My doc here says my other option is Georgia?
I really need something closer.
I lost my job and have a husband who isn't supportive.
We were separated for two years and he came back when I got ill and
lost my job. I get no money from him.
My children take me to my appointment and
are paying for these trips, and my hospital bills so I can continue to go.
My husband does buy my meds most of the time.
If not my son does.
I don't know where to turn....
I understand MS is a disease found up north where I'm from
But I know I'm not the only person in SC with MS and/or CVMs!
This is so crazy!
Tired of Docs and Neros
If I could, I'd just take my meds and forget it for a while!
I'm so tired of the crazy power struggle games.
Hey! Hello!!!
WE ARE REALLY SICK HERE!
THIS ISN"T JUST A TEST NEROS AND DOCS!!!!!
Weary, feeling a little unlucky right now LOL
NiCee
I have been trying as you may have read for 12 years to find out what is wrong with me. MS has been in the back of my mind for 6 of those when I had an MRI light up and a neuro guy repeated it at1.5 that did not show anything. So I was dismissed as OK. My question is are your doctors anywhere near Little Rock Arkansas and if so Who are they? I am a female. I am an RN working on a MSN in family practice. My latest symptoms appear to be lack of ability to spell LOL it takes forever to do this post for instance, constipation, i joke my prostrate does ot work because I have to "assume the position" to make my bladder functional more times than not. Vertigo is horrible. And this week I have a tingling or shockingfeelig in my nick and thigh both on my left. You re the greatest by the way
I have seen the seagull in so many situations!!!!!!
I have seen the seagull in so many situations!!!!!!
Wow! Cool thread!
I got lucky with my neuro who, in the early days in the path of diagnosis, told me "I know this is not just in your head - this is all very real. You don't see me handing you a referral to a psychiatrist." I would gladly see one if he had, but the point is HE LISTENED! I was asking him last month if I should have another set of MRIs, and he said "I don't think they'll be of much help, and besides, they're expensive. I know your disease is active by the symptoms you describe."
Well, that was cool! I love this old guy. I'm still seeing the MS neuro at UCSF on the 30th, and I'm pretty sure she'll ask for another set to be done, but I'm sticking with my local guy as long as he practices.
Seagull Approach - LOL!! Too funny!!
To all of you, keep searching for the right doc. They DO exist.
I got lucky with my neuro who, in the early days in the path of diagnosis, told me "I know this is not just in your head - this is all very real. You don't see me handing you a referral to a psychiatrist." I would gladly see one if he had, but the point is HE LISTENED! I was asking him last month if I should have another set of MRIs, and he said "I don't think they'll be of much help, and besides, they're expensive. I know your disease is active by the symptoms you describe."
Well, that was cool! I love this old guy. I'm still seeing the MS neuro at UCSF on the 30th, and I'm pretty sure she'll ask for another set to be done, but I'm sticking with my local guy as long as he practices.
Seagull Approach - LOL!! Too funny!!
To all of you, keep searching for the right doc. They DO exist.
>>And, above all, they must believe us. If they don't, we need to search until we find a doctor that does. That is why many of us are on our third, fifth, or tenth docs.
Amen!
for those that see doctors at the place sailorsong and i go, be forewarned. their whold goal is not to believe you until you're almost dead.
i have had 3 exacerbations since starting copaxone 5 months ago. recently the on/off again of pins/needles/cold on the left side of my face and head. had a strong reminder of why i'm scared of vertigo and weakness as it happend shortly yesterday while walking. glad the vertigo isn't here much today but the uneasy and overall weakness is.
happy you have yourself a doctor that listens to you Q. what a world of difference it makes.
Amen!
for those that see doctors at the place sailorsong and i go, be forewarned. their whold goal is not to believe you until you're almost dead.
i have had 3 exacerbations since starting copaxone 5 months ago. recently the on/off again of pins/needles/cold on the left side of my face and head. had a strong reminder of why i'm scared of vertigo and weakness as it happend shortly yesterday while walking. glad the vertigo isn't here much today but the uneasy and overall weakness is.
happy you have yourself a doctor that listens to you Q. what a world of difference it makes.
> They fly in, swoop around making a lot of noise, crap on evreything and fly away.
LOL! That describes it perfectly.
LOL! That describes it perfectly.
Greeting to my friend,
I always find your posts very helpful & most time regardless of your situation you sense of humor is extraordinary.
Hope You Keep smiling :-D
John..
I always find your posts very helpful & most time regardless of your situation you sense of humor is extraordinary.
Hope You Keep smiling :-D
John..
I just want to throw in for everyone, I got my MS dx super easily once I finally heard the word MS. The stuff from years before that was never dx'd bothered me but I was too young to care too much. So when my arm went numb and I got my MRI's they lit up like a Christmas tree.
With 2 seperate attacks within 2 months and the MRI my dx was easily confirmed by my PCP, 2 neuros and and opthamologist., Now a year later, I am being told that my sx's may not be from MS. We know I have MS. Even the LP they decided to do said more than 5 o bands. There is no doubt in my mind or in my neuro's mind that I have MS, but he thinks the excessive list of sx's I have are from something else.
Now I am off to UCSF to get an opinion from an MS specialist. My Dr is reaching sooo hard to find a way to get a more "fixable" answer for my complaints. He is sure they are real, but almost feels bad that he can't help make them better.
Every specialist (eyes, ortho, etc) has said "sorry, your MS is causing this". So I keep getting more and more "validation" of my MS sx's to the point where I am starting to think some of it is in my head. It is so hard with this disease to have all these issues and pain and not be able to pinpoint the cause.
Thanks again Quix for reminding us that it is for real and we are not alone.
D
With 2 seperate attacks within 2 months and the MRI my dx was easily confirmed by my PCP, 2 neuros and and opthamologist., Now a year later, I am being told that my sx's may not be from MS. We know I have MS. Even the LP they decided to do said more than 5 o bands. There is no doubt in my mind or in my neuro's mind that I have MS, but he thinks the excessive list of sx's I have are from something else.
Now I am off to UCSF to get an opinion from an MS specialist. My Dr is reaching sooo hard to find a way to get a more "fixable" answer for my complaints. He is sure they are real, but almost feels bad that he can't help make them better.
Every specialist (eyes, ortho, etc) has said "sorry, your MS is causing this". So I keep getting more and more "validation" of my MS sx's to the point where I am starting to think some of it is in my head. It is so hard with this disease to have all these issues and pain and not be able to pinpoint the cause.
Thanks again Quix for reminding us that it is for real and we are not alone.
D
WOW!!!!!! So well said, and validation is essential. We seek proof in pictures sometimes, or substantial evidence for some issues - when what we really need is those who know what they are looking at, and what it means!
This write up means so much Doc Q. Thank you so very much!
-Shell
This write up means so much Doc Q. Thank you so very much!
-Shell
Thank you for your post!
Seven years and still no DX. My last test was EMG/NCS to rule out carpal tunnel, which it did. He did the EMG because a P.A. said I had carpal tunnel. My neuro found I had a positive sign with the hammer on my right wrist. I also have continuous thumb-in-fist closed hand feature.
I go back in July for my 8 week visit, but NO VALIDATION of any kind, not even a possible, probable, nothing.
As a medical transcriptionist now for almost 30 years, home-based thankfully, the intention tremors in my hands are causing me HUGE problems. If I cannot type, I cannot make a living.
Without a diagnosis, if I were not able to work, how could I possibly even think about getting disability. I would be turned down.
I am a self-employed independent contractor for a local hospital, which means I am paid on production. If I cannot type, I cannot make a living.
terri
Seven years and still no DX. My last test was EMG/NCS to rule out carpal tunnel, which it did. He did the EMG because a P.A. said I had carpal tunnel. My neuro found I had a positive sign with the hammer on my right wrist. I also have continuous thumb-in-fist closed hand feature.
I go back in July for my 8 week visit, but NO VALIDATION of any kind, not even a possible, probable, nothing.
As a medical transcriptionist now for almost 30 years, home-based thankfully, the intention tremors in my hands are causing me HUGE problems. If I cannot type, I cannot make a living.
Without a diagnosis, if I were not able to work, how could I possibly even think about getting disability. I would be turned down.
I am a self-employed independent contractor for a local hospital, which means I am paid on production. If I cannot type, I cannot make a living.
terri
I have found all the posts on this thread very interesting and thought I would just add my penniesworth to take my mind off the really tough day I am having..but nothing to do with MS..
I also like validation, answers and find dealiing with the unknown very hard. I have known for several years that something was not right with my body but just thought I had a weak immune system. However when I had 2 mri scans within a month both showing changes to lesions and abnormal VEP's I still found it hard to come to terms with my diagnosis.
So for me I had the validation and evidence almost before my first serious relapse...which was enough to convince me that my MS was real.
I kinda feel as if I am lucky to have been given my diagnosis so quickly and although I have only met my neuro once, I liked him and have faith in him that he knows his stuff as he is one of the leading MS research consultants in SW England. Finding a good neuro seems to be something that many people in USA have probems with. However who wants this dx...I don't really feel lucky or brave at all.
Anyhow just wanted to say that I appreciated your thoughtful post Quix and I strongly believe that we all know our bodies better than anyone. There is something in there about feeling beleived and trusted by others and how hurtful it can be when we are suffering to not have the support of our doctors.
One of the reasons I am going on the drug trial is that as a result of all the testing I will have to go through I hope I will get further validations and a baseline of my MS. I go for the screening next week and will update on forum and in journal
I did not spot any typos and realise that my typing has deteriorated a great deal recently but hey hoping most of you are in the same position!
OT.....my crap day...still do not know if my husband is getting back from Afghanistan tomorrow, Friday or Saturday and feel irritated with the army for working my huband 14-16 hours a day without a break since March and for communicating so badly and delaying bringing him home to our family.
Also problems with my 18 year old son with Asperger Syndrome and feeling the strain of having to deal with stuff with kids without my other half.
:((( Hopefully next time I post I will be in a different mood :)
I feel this is a rather disjointed post but thanks for hanging in there till the end.
Sarah
I also like validation, answers and find dealiing with the unknown very hard. I have known for several years that something was not right with my body but just thought I had a weak immune system. However when I had 2 mri scans within a month both showing changes to lesions and abnormal VEP's I still found it hard to come to terms with my diagnosis.
So for me I had the validation and evidence almost before my first serious relapse...which was enough to convince me that my MS was real.
I kinda feel as if I am lucky to have been given my diagnosis so quickly and although I have only met my neuro once, I liked him and have faith in him that he knows his stuff as he is one of the leading MS research consultants in SW England. Finding a good neuro seems to be something that many people in USA have probems with. However who wants this dx...I don't really feel lucky or brave at all.
Anyhow just wanted to say that I appreciated your thoughtful post Quix and I strongly believe that we all know our bodies better than anyone. There is something in there about feeling beleived and trusted by others and how hurtful it can be when we are suffering to not have the support of our doctors.
One of the reasons I am going on the drug trial is that as a result of all the testing I will have to go through I hope I will get further validations and a baseline of my MS. I go for the screening next week and will update on forum and in journal
I did not spot any typos and realise that my typing has deteriorated a great deal recently but hey hoping most of you are in the same position!
OT.....my crap day...still do not know if my husband is getting back from Afghanistan tomorrow, Friday or Saturday and feel irritated with the army for working my huband 14-16 hours a day without a break since March and for communicating so badly and delaying bringing him home to our family.
Also problems with my 18 year old son with Asperger Syndrome and feeling the strain of having to deal with stuff with kids without my other half.
:((( Hopefully next time I post I will be in a different mood :)
I feel this is a rather disjointed post but thanks for hanging in there till the end.
Sarah
THANK YOU for posting this. My urodynamic testing results were also normal. Clearly something is going on down there, even if their tests don't show it. It's nice to know I'm not crazy.
MY neuro definitley needs validation from test results
From my first visit he suggested I had MS but as the test result come in he has changed his mind. Over the last 9 months I have had- LP, 2x MRI (1.5T ), SSEP, EEG & Brainstem potentails. The only things that showed was a solitary T2 Hyperintense focus in the right parietal subcortical white matter which is non specific. and from the clinical examination I had brisk reflexes. And a questionable reaction on my right foot reflex.
It all started while visiting San Francisco I fell off a segway and broke my elbow it was only a minor break but about 3 weeks after doing it my fingers started to go numb/tingle, a few weeks past and it was my whole arm, a couple more weeks, my head was getting the same feeling, I was also incredibly tired, and had start to twitch. I had been told about 6 months ago that the symptoms I was experiencing were not connected to the elbow break.
By the end of January all my limbs where tingling and had a feeling of intense preasure. By April my right eyelid was drooping I have had a preasure like headache on the right side of my head since christmas. Just to add to it all this last couple of weeks the tingling is happening in my private parts and around my neck is a feeling like your wearing a tight scarf. Over the 9 months I have had several bouts of constipation which I have not had before and also a change in my water works!
With no answer to the situation, the neuro said he would refer me to have a general medical assesment. My neuro had told me not to hold my breath on this (he has already told me he does not know what is causing my problems, but was sure it was neurological) so my expectations were not high.
I had the blood tests done for which I do not have the results yet. I was impressed with the Dr. he had actually done some backgroud research before I entered the room, he had spent time talking to my neuro and knew what tests I had had etc... He asked me to run through the whole story again and then told mehe thougth I had RSD-"Reflex sympathetic dystrophy" or CRPS-" Complex regional pain syndrome"(they are the same thing). He has given me Gabapentin but has explained it may take some experimenting to find a way of controlling it. I knew nothing about the condition so was really stuck for any questions I should ask, in honesty he had completley caught me off guard. I nearly fell off the chair when he said he would right it down so I can google it!
Having done a bit of googling, although there are a few similarities in the symptoms listed, but I have to say I'm not convinced that this is the true answer,the only symtoms that seem to match are the burning sensation which I get in all my limbs, and the twitching/muscle spasms and the fact I had broken my elbow. But I do not get change of colour or change in skin. Nor am I hyper sensitive to touch. I am however pleased that I have been given some medication that may help.
I have to take 300mg of Gabapentin 3 times a day starting off with a build up of this. Day 1 one capsule Day 2 two, and day 3 the full 3 capsules. The thing is I think i would be given the same drugs if it is PPMS which has always been my suspicion. I hope the Gabapentin will help. So far this has been 9 months of slow progression I don't think the Gabapentin will stop that, I believe it will releve the pain although I've taken it for 2 weeks now and there has been no improvement.
I wondered whether there is anyone that has been mis diagonosed with RDS before MS? I am now concerned that I will be signed off the neuro and will not have any more MRI's and any new symptoms will be put down to RSD.
My neuro seems to need validation. I am wondering if I should get a 3T MRI done of neck and spine, the closest 3T MRI is 3 hour away and not NHS, I think I would have to pay about £900. But if the neuro ordered it then I'm pretty sure our insurance would cover it. Is it worth pushing for or should I accept the Dx RDS?
I see the neuro again in 2 weeks when I think he'll sign me off. and the General medical Dr the week after.
Sorry for such a long post.
From my first visit he suggested I had MS but as the test result come in he has changed his mind. Over the last 9 months I have had- LP, 2x MRI (1.5T ), SSEP, EEG & Brainstem potentails. The only things that showed was a solitary T2 Hyperintense focus in the right parietal subcortical white matter which is non specific. and from the clinical examination I had brisk reflexes. And a questionable reaction on my right foot reflex.
It all started while visiting San Francisco I fell off a segway and broke my elbow it was only a minor break but about 3 weeks after doing it my fingers started to go numb/tingle, a few weeks past and it was my whole arm, a couple more weeks, my head was getting the same feeling, I was also incredibly tired, and had start to twitch. I had been told about 6 months ago that the symptoms I was experiencing were not connected to the elbow break.
By the end of January all my limbs where tingling and had a feeling of intense preasure. By April my right eyelid was drooping I have had a preasure like headache on the right side of my head since christmas. Just to add to it all this last couple of weeks the tingling is happening in my private parts and around my neck is a feeling like your wearing a tight scarf. Over the 9 months I have had several bouts of constipation which I have not had before and also a change in my water works!
With no answer to the situation, the neuro said he would refer me to have a general medical assesment. My neuro had told me not to hold my breath on this (he has already told me he does not know what is causing my problems, but was sure it was neurological) so my expectations were not high.
I had the blood tests done for which I do not have the results yet. I was impressed with the Dr. he had actually done some backgroud research before I entered the room, he had spent time talking to my neuro and knew what tests I had had etc... He asked me to run through the whole story again and then told mehe thougth I had RSD-"Reflex sympathetic dystrophy" or CRPS-" Complex regional pain syndrome"(they are the same thing). He has given me Gabapentin but has explained it may take some experimenting to find a way of controlling it. I knew nothing about the condition so was really stuck for any questions I should ask, in honesty he had completley caught me off guard. I nearly fell off the chair when he said he would right it down so I can google it!
Having done a bit of googling, although there are a few similarities in the symptoms listed, but I have to say I'm not convinced that this is the true answer,the only symtoms that seem to match are the burning sensation which I get in all my limbs, and the twitching/muscle spasms and the fact I had broken my elbow. But I do not get change of colour or change in skin. Nor am I hyper sensitive to touch. I am however pleased that I have been given some medication that may help.
I have to take 300mg of Gabapentin 3 times a day starting off with a build up of this. Day 1 one capsule Day 2 two, and day 3 the full 3 capsules. The thing is I think i would be given the same drugs if it is PPMS which has always been my suspicion. I hope the Gabapentin will help. So far this has been 9 months of slow progression I don't think the Gabapentin will stop that, I believe it will releve the pain although I've taken it for 2 weeks now and there has been no improvement.
I wondered whether there is anyone that has been mis diagonosed with RDS before MS? I am now concerned that I will be signed off the neuro and will not have any more MRI's and any new symptoms will be put down to RSD.
My neuro seems to need validation. I am wondering if I should get a 3T MRI done of neck and spine, the closest 3T MRI is 3 hour away and not NHS, I think I would have to pay about £900. But if the neuro ordered it then I'm pretty sure our insurance would cover it. Is it worth pushing for or should I accept the Dx RDS?
I see the neuro again in 2 weeks when I think he'll sign me off. and the General medical Dr the week after.
Sorry for such a long post.
As always your post is thought provoking and appropriately sensitive.
As you know my dx was a very long time coming and left me with enormous doubts of my own. Thankfully the medics I deal with have no doubt as it seems that the neuro I initially tore apart is extremley cautious and will not dx until he is 110% positive,
As next week is my 12 month anniversary of positive dx after 20 years of sx, I asked my MS Nurse if they would do another MRI - her reaction was startling - "what for?" she asked, "It won't tell us how you are feeling or how the illness is progressing - only you know that". I could have kissed her after everything I have been through.
I know we have different approaches here in the UK but I also know that I am lucky to have an enlightened team here helping me now. That in itself validates my current situation.
Thanks again Quix for these thoughts
Pat x
As you know my dx was a very long time coming and left me with enormous doubts of my own. Thankfully the medics I deal with have no doubt as it seems that the neuro I initially tore apart is extremley cautious and will not dx until he is 110% positive,
As next week is my 12 month anniversary of positive dx after 20 years of sx, I asked my MS Nurse if they would do another MRI - her reaction was startling - "what for?" she asked, "It won't tell us how you are feeling or how the illness is progressing - only you know that". I could have kissed her after everything I have been through.
I know we have different approaches here in the UK but I also know that I am lucky to have an enlightened team here helping me now. That in itself validates my current situation.
Thanks again Quix for these thoughts
Pat x
Thanks Quix and everyone I have struggled so much with this very issue. I feel partly responsible because I have tried so hard over the last 20 years to deny this disease. After all these years you would think I would have educated myself better. I am in some ways really grateful to have taken the approach that I have.
I have so many things I want to say here. This topic is a hot button for me and stirs up so many emotions and so much fear. I have been treated really badly by the medical community- at times. Other times they have been wonderful.
The fact that any test is used as a barometer for how we should or shouldn't be feeling really disturbs me. This disease is way to cunning and creative to fit into and mold or pattern.
There is no doubt any longer about my dx. but there was a time when I was treated as if I was a liar, a drug addict, a con-woman. I have been poked, prodded, hospitalized and isolated -Literally put in isolation after a spinal tap and kept there for over a week.
I have been humiliated and bullied into doing tests I know I don't need- again. All because one doctor thinks that all the others have been mistaken. Once the MRI comes back they always excuse themselves and their behavior with the same excuses My symptoms aren't typical of MS.
I have a difficult time just getting straight definitive answers most of the time. Which I understand due to the nature of the disease and for that fact alone I think validation for us shall always be fleeting- but oh so very important!
Then I get on this site and discover that in-fact my symptoms are completely typical of an MS patient. Validation for me sometimes works far better than any medicine. Just knowing that I am not alone and that it isn't all in my head helps more than I ever thought possible.
I don't allow much testing anymore. I don't measure anymore. I told my doctor after my last MRI that I didn't want to go over it with him. I am better because I feel better. I am worse when I feel worse. I find that for me less is more. Less time with the doctor. Less time with the medicines. Less time spent analyzing whether I should actually be feeling what I am feeling. Less time living in the disease leaves me with More time to just live. More time to really enjoy what may very well be The Best Day for a while to come.
Sorry I kind of rambled on here but this subject means alot to me. Thank you so much for bringing it up!
I have so many things I want to say here. This topic is a hot button for me and stirs up so many emotions and so much fear. I have been treated really badly by the medical community- at times. Other times they have been wonderful.
The fact that any test is used as a barometer for how we should or shouldn't be feeling really disturbs me. This disease is way to cunning and creative to fit into and mold or pattern.
There is no doubt any longer about my dx. but there was a time when I was treated as if I was a liar, a drug addict, a con-woman. I have been poked, prodded, hospitalized and isolated -Literally put in isolation after a spinal tap and kept there for over a week.
I have been humiliated and bullied into doing tests I know I don't need- again. All because one doctor thinks that all the others have been mistaken. Once the MRI comes back they always excuse themselves and their behavior with the same excuses My symptoms aren't typical of MS.
I have a difficult time just getting straight definitive answers most of the time. Which I understand due to the nature of the disease and for that fact alone I think validation for us shall always be fleeting- but oh so very important!
Then I get on this site and discover that in-fact my symptoms are completely typical of an MS patient. Validation for me sometimes works far better than any medicine. Just knowing that I am not alone and that it isn't all in my head helps more than I ever thought possible.
I don't allow much testing anymore. I don't measure anymore. I told my doctor after my last MRI that I didn't want to go over it with him. I am better because I feel better. I am worse when I feel worse. I find that for me less is more. Less time with the doctor. Less time with the medicines. Less time spent analyzing whether I should actually be feeling what I am feeling. Less time living in the disease leaves me with More time to just live. More time to really enjoy what may very well be The Best Day for a while to come.
Sorry I kind of rambled on here but this subject means alot to me. Thank you so much for bringing it up!
This posr is one to save and look back on whenever the need for validation gets stronger within. While I am so sorry that we all need this, I also think this forum really really is what keeps a lot of us going.
Thanks, quix and everyone else, too!
Addi
Thanks, quix and everyone else, too!
Addi
Thanks for posting this Quix. Your timing is perfect, but then again what are the odds of finding someone here who can relate lol!
I am reading with one eye closed so if you had typos I didn't see em with the good eye.
So glad to be part of this amazing group
D
I am reading with one eye closed so if you had typos I didn't see em with the good eye.
So glad to be part of this amazing group
D
I have nothing to add to this right now - I just want to tell you this has made excellent reading. Thanks for all the thoughtfulness put into this and all the replies. I enjoyed the laughs, too.
Lu
Lu
That made me laugh, thanks. This situation had the "Sea Gull Method" written all over it. :)
Regarding the lack of communication between the two doctors, this hospitalist neuro told me she tried to contact my neuro, but that he didn't return her call. When I told my neuro what she said he said he never got a message from her. He was pretty emphatic about this and he is actually a pretty calm guy normally. He said they have an email alert system with other doctors and had she used that system he would have gotten her message right away and woudl have called her back. I don't know what happened and don't care at this point, what's done is done. Thankfully it didn't affect the treatment I got - this time. But, I wish I had known about it earlier so I could have nipped it in the bud from the beginning.
Lessons learned is what I am taking away from this experience. It hopefully won't happen again.
Julie
Regarding the lack of communication between the two doctors, this hospitalist neuro told me she tried to contact my neuro, but that he didn't return her call. When I told my neuro what she said he said he never got a message from her. He was pretty emphatic about this and he is actually a pretty calm guy normally. He said they have an email alert system with other doctors and had she used that system he would have gotten her message right away and woudl have called her back. I don't know what happened and don't care at this point, what's done is done. Thankfully it didn't affect the treatment I got - this time. But, I wish I had known about it earlier so I could have nipped it in the bud from the beginning.
Lessons learned is what I am taking away from this experience. It hopefully won't happen again.
Julie
Julie, your story is very interesting. When a hospitalist questions a diagnosis, it is their duty to contact the current primary doc (in this case your neuro) and get the real story before unmaking the wheel. So often we see a person's whole diagnosis thrown out by irrespnsible doctors who fail to get all the facts before they act.
I call this practicing medicine the Sea Gull Method. They fly in, swoop around making a lot of noise, crap on evreything and fly away.
Quix
I call this practicing medicine the Sea Gull Method. They fly in, swoop around making a lot of noise, crap on evreything and fly away.
Quix
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