Aa
im convinced its ms
hi. im a 37 year old woman. ive been reading all the posts on here i could find, and so many of them i can so relate too.
my father has ms and suffers all the symptons i have. although hes had his many years.
i have a long history of what the drs have described as phantom pains. up until recently, they were mainly in my lower abdoman.
i guess the place to start though would be about 8 years ago on christmas day. out of the blue i felt very dizzy and passed out only for a few seconds. i put it down to the glass of table wine, or 2 that i had with my dinner. thought nothing more of it until early january. i was laughing with a friend, and suddenly it felt, in seconds everything went red and dizzy. the next thing i knew my friend was phoning for help as i had fitted and lost the feeling in my whole left side.
the hospital thought i had a stroke or some type, of tia, but after testing they found no evidence of either. i spent a couple of days there before discharge, and from there it took about 3 weeks for the feeling to properly come back. it was an awful experience as it was made clear they believed it wasnt as bad as it actually was. the fits and left a left side weakness, this happened 3 more times in quick succession after that, and then i seemed ok ish.
over the last few years i have had several dizzy moments. ive even passed out on a handful of occassions.
about 7 years ago i started having bladder problems. i have urgency to urinate and a regular feeling that my bladder wont empty properly. the flow has declined over time to no trickle at times and its now a struugle to pass urine 95% of the time. i have always had bowel problems that im told is ibs, even though thats never actually been tested for.
anyway, january 2010, i woke up with heart palpatations, severe weakness in my limbs, all over body tremors and shakes, random muscle spasms mainly in my thighs, but also in my torso. shortness of breath, terrible dizzyness that stayed. i felt cold and sick, to be honest it frightened the hell out of me! pins and needles in my left leg and left arm and hand.
my husband phoned the gp and he visited me at home. i climbed out of my bed as he asked and the floor rushed up to greet me. ive never experienced anything like it before in my life. he said i had vertigo, left some pills, and that was that.
it lasted about 3 weeks, where i was constantly dizzy even when i was layed down. sleeping felt impossible as the dizzyness was there even then when i turned over or even moved my head.
watching traffic moving made me fall over, seeing people moving around me made me want to sit down on the floor before i fell. the tv made me ill.
it seemed to get alot better even though i was still left with a residual dizzyness if i turned to quick or watched things moving. until july 2010 when i woke up, again out of the blue, to all the same again only alot worse. this time i was ill constantly for 4 months. in fact ive still got it now. i spent 2 weeks in hospital were they did a LP, MRI, MRA, a series of blood tests of all came back negative. i originally went into hospital after the 12th week as out of the blue i had 3 seizures.
my neurologist has started treating me with GABAPENTIN and CYCLIZINE, neither of which i think help much, as im still dizzy, but not to the degree.
i cant drive now as concentrating makes me loose my legs to spasms and tremors. i get motion sickness now. i am weak all the time too. i feel so ill and worry that this is it! my gp seems to have given up finding whats wrong, and the list of refferals to the hospital are endless.
i have a history of childhood abuse and unfortunately it seems, that has been to easily blamed for the symptons i have, and that worries me greatly. even though i have an extensive record of mental health services i have freely engagged with several years ago to box the effects that my childhood clearly had on me. i feel like im banging my head on a brick wall.
i dont know what my next move should be, i feel i cant be left alone with this as it is for the rest of my life. im very lucky that i have a wonderful husband who is incredibly supportive and understanding, but i worry about the future for us, and our little boy without the help i need. im sure its ms, im convinced it is. we just need to have something deffinitive offered, other than its a neurological dysfunction, and theres nothing we can do other than treat the symptoms.
i have memory loss alot of the time now, my little boy has noticed it to. i slur words, but not all the time. i cant remember what word i need in mid conversation. i cant concentrate on a book anymore as my vision blurs, i feel panicky at times and frustrated alot. i shout alot more than usual. im not coping with this not being heard thing, and somedays i actually feels rather depressed. its hardly suprissing i suppose. i just want my energetic life back, and to not need the wheel chair anymore to get into town.
vicky
my father has ms and suffers all the symptons i have. although hes had his many years.
i have a long history of what the drs have described as phantom pains. up until recently, they were mainly in my lower abdoman.
i guess the place to start though would be about 8 years ago on christmas day. out of the blue i felt very dizzy and passed out only for a few seconds. i put it down to the glass of table wine, or 2 that i had with my dinner. thought nothing more of it until early january. i was laughing with a friend, and suddenly it felt, in seconds everything went red and dizzy. the next thing i knew my friend was phoning for help as i had fitted and lost the feeling in my whole left side.
the hospital thought i had a stroke or some type, of tia, but after testing they found no evidence of either. i spent a couple of days there before discharge, and from there it took about 3 weeks for the feeling to properly come back. it was an awful experience as it was made clear they believed it wasnt as bad as it actually was. the fits and left a left side weakness, this happened 3 more times in quick succession after that, and then i seemed ok ish.
over the last few years i have had several dizzy moments. ive even passed out on a handful of occassions.
about 7 years ago i started having bladder problems. i have urgency to urinate and a regular feeling that my bladder wont empty properly. the flow has declined over time to no trickle at times and its now a struugle to pass urine 95% of the time. i have always had bowel problems that im told is ibs, even though thats never actually been tested for.
anyway, january 2010, i woke up with heart palpatations, severe weakness in my limbs, all over body tremors and shakes, random muscle spasms mainly in my thighs, but also in my torso. shortness of breath, terrible dizzyness that stayed. i felt cold and sick, to be honest it frightened the hell out of me! pins and needles in my left leg and left arm and hand.
my husband phoned the gp and he visited me at home. i climbed out of my bed as he asked and the floor rushed up to greet me. ive never experienced anything like it before in my life. he said i had vertigo, left some pills, and that was that.
it lasted about 3 weeks, where i was constantly dizzy even when i was layed down. sleeping felt impossible as the dizzyness was there even then when i turned over or even moved my head.
watching traffic moving made me fall over, seeing people moving around me made me want to sit down on the floor before i fell. the tv made me ill.
it seemed to get alot better even though i was still left with a residual dizzyness if i turned to quick or watched things moving. until july 2010 when i woke up, again out of the blue, to all the same again only alot worse. this time i was ill constantly for 4 months. in fact ive still got it now. i spent 2 weeks in hospital were they did a LP, MRI, MRA, a series of blood tests of all came back negative. i originally went into hospital after the 12th week as out of the blue i had 3 seizures.
my neurologist has started treating me with GABAPENTIN and CYCLIZINE, neither of which i think help much, as im still dizzy, but not to the degree.
i cant drive now as concentrating makes me loose my legs to spasms and tremors. i get motion sickness now. i am weak all the time too. i feel so ill and worry that this is it! my gp seems to have given up finding whats wrong, and the list of refferals to the hospital are endless.
i have a history of childhood abuse and unfortunately it seems, that has been to easily blamed for the symptons i have, and that worries me greatly. even though i have an extensive record of mental health services i have freely engagged with several years ago to box the effects that my childhood clearly had on me. i feel like im banging my head on a brick wall.
i dont know what my next move should be, i feel i cant be left alone with this as it is for the rest of my life. im very lucky that i have a wonderful husband who is incredibly supportive and understanding, but i worry about the future for us, and our little boy without the help i need. im sure its ms, im convinced it is. we just need to have something deffinitive offered, other than its a neurological dysfunction, and theres nothing we can do other than treat the symptoms.
i have memory loss alot of the time now, my little boy has noticed it to. i slur words, but not all the time. i cant remember what word i need in mid conversation. i cant concentrate on a book anymore as my vision blurs, i feel panicky at times and frustrated alot. i shout alot more than usual. im not coping with this not being heard thing, and somedays i actually feels rather depressed. its hardly suprissing i suppose. i just want my energetic life back, and to not need the wheel chair anymore to get into town.
vicky
I just want to say I am sorry for the abuse you suffered as a child. I don't want you to feel you have to tell your story but....
I would ask you to think....and ponder on the issue. If you were physically abuse...thrown against walls, shaken, kicked, beat.....it is very possible that your body was harmed and it would show up neurologically. A child's brain can be scattered by a toss or kick....
Just something to think about. Child abuse doesn't just leave emotional scars. It can leave your body in total chaos.
I would ask you to think....and ponder on the issue. If you were physically abuse...thrown against walls, shaken, kicked, beat.....it is very possible that your body was harmed and it would show up neurologically. A child's brain can be scattered by a toss or kick....
Just something to think about. Child abuse doesn't just leave emotional scars. It can leave your body in total chaos.
hi.
surprise, surprise!! saw the psyciatrist today as arranged, and they went down the usual path of blaming my childhood abuse on my neurological problems. seems u can never do enough to try to better yourself and your life. as soon as its on your records, and theres no easy answer to a medical question, its too easy a path to go down. happens all the time.
they say that it all cant be blamed on this, but as theres so much much going on, it seems i could do wiv more therapy to investigate. of course ive said yes! any help is better than no help at all. but the frustration!! OMG i could scream!!! its the same old, same old. it feels like the past cant ever be put behind me with so called medical experts as long as i take a breathe.
so.... im gonna go wiv this latest diagnosis, and see if the neurological dysfunction betters inself in time, (only hope, i guess there right and im wrong) and time is gonna tell. not totally convinced at this atage i have to say, but hey! what the hell do i know lol.
WANNA SCREAM, SCREAM, SCREAM!!!!
surprise, surprise!! saw the psyciatrist today as arranged, and they went down the usual path of blaming my childhood abuse on my neurological problems. seems u can never do enough to try to better yourself and your life. as soon as its on your records, and theres no easy answer to a medical question, its too easy a path to go down. happens all the time.
they say that it all cant be blamed on this, but as theres so much much going on, it seems i could do wiv more therapy to investigate. of course ive said yes! any help is better than no help at all. but the frustration!! OMG i could scream!!! its the same old, same old. it feels like the past cant ever be put behind me with so called medical experts as long as i take a breathe.
so.... im gonna go wiv this latest diagnosis, and see if the neurological dysfunction betters inself in time, (only hope, i guess there right and im wrong) and time is gonna tell. not totally convinced at this atage i have to say, but hey! what the hell do i know lol.
WANNA SCREAM, SCREAM, SCREAM!!!!
hello sarah.
thank u for reading. i have in fact had rather alot of counselling many years back now. i had an amazing psycotherapist for about 4 years. she was amazing and helped me deal with the abuse and box it away. im very glad i did it, and life is way more balanced since i have. i strongly recommend those services to anyone! and am happy to say that for myself, those childhood issues are a thing of my past in more ways than one.
the problem however is not in the past for health proffessionals. when they cant easily find the answers to my symptons, its been all to easy to blame what happened as its there in black and white on the medical paperwork. in fact about 18 months ago, they blamed my over active bladder on the abuse. im defo not convinced myself. i have since been asked to attend a psyciatrist appointment for an evaluation. i see this as a possitive move, but also know that, from previous experience that once 1 has made there mind up, they all seem to follow suit. i only hope that in this case my fears are proved wrong, as i too believe there is NO relevance in my symptons and my previous history.
thank u for your time as its been a valued oppinion to me, u being a counsellor.
happy new year.
vicky
thank u for reading. i have in fact had rather alot of counselling many years back now. i had an amazing psycotherapist for about 4 years. she was amazing and helped me deal with the abuse and box it away. im very glad i did it, and life is way more balanced since i have. i strongly recommend those services to anyone! and am happy to say that for myself, those childhood issues are a thing of my past in more ways than one.
the problem however is not in the past for health proffessionals. when they cant easily find the answers to my symptons, its been all to easy to blame what happened as its there in black and white on the medical paperwork. in fact about 18 months ago, they blamed my over active bladder on the abuse. im defo not convinced myself. i have since been asked to attend a psyciatrist appointment for an evaluation. i see this as a possitive move, but also know that, from previous experience that once 1 has made there mind up, they all seem to follow suit. i only hope that in this case my fears are proved wrong, as i too believe there is NO relevance in my symptons and my previous history.
thank u for your time as its been a valued oppinion to me, u being a counsellor.
happy new year.
vicky
Hi there and I just wanted to say hello and that you have joined a great forum. It sounds as if you have had some very worrying symptoms and that no-ome has yet got to the bottom of what is going on in your body. The only thing I can add is that many of us are treated with Gabapentin (Neurontin) for nerve/neuropathic pain and we do not have epilepsy/seizures so I would hope that this may be helping you in more ways that you are aware.
Thank you for sharing with honesty and courage that you suffered child abuse. I can only say that this has NO relevance as far as the doctors are concerned in terms of the physical symptoms you have experienced Your privacy about your past should be respected even if it is on your medical notes. I wondered if you have ever had counselling to help you with this as in my experience as a counsellor I have found that clients have found it very helpful to release and express what has happened in their life with someone they can trust, who does not judge them. You mention putting what happened away in a box and this may be your way of coping and moving forward and if this is the case then this is probably best for you. However, if you still have unresolved issues, then just think about allowing yourself some time and space to talk about it.
I wish you strength and fortitude along your journey and hope that you find a helpful understanding doctor who will in time be able to provide you with answers.
With best wishes
Sarah
Thank you for sharing with honesty and courage that you suffered child abuse. I can only say that this has NO relevance as far as the doctors are concerned in terms of the physical symptoms you have experienced Your privacy about your past should be respected even if it is on your medical notes. I wondered if you have ever had counselling to help you with this as in my experience as a counsellor I have found that clients have found it very helpful to release and express what has happened in their life with someone they can trust, who does not judge them. You mention putting what happened away in a box and this may be your way of coping and moving forward and if this is the case then this is probably best for you. However, if you still have unresolved issues, then just think about allowing yourself some time and space to talk about it.
I wish you strength and fortitude along your journey and hope that you find a helpful understanding doctor who will in time be able to provide you with answers.
With best wishes
Sarah
Hi SMitheman, welcome again to the forum here. The mix of symptoms you list is certainly a mixed bag. some of them could be MS, while others don't sound at all like MS.
For starters, symptoms don't normally appear all over the body. It would take a large number of lesions located in a variety of places to make that happen.
Concentrating while driving should not make your legs go into spasms and be useless.
The majority of cardiac symptoms are not related to MS. A local neuro here told me recently that less than 5% of people with MS have autonomic problems (heart, breathing, etc - all those automatic body functions). Those would come from brain stem lesions. Passing out is also very rare with MS.
The vertigo you have sounds miserable and could be vestibular or neurologic in nature. either way, I hope it remains controlled for you.
Some of the things you experience could be MS but it might take the doctors quite awhile to find a definitive answer. I'm so sorry you are stuck in limbo with these worries.
I hope you will find lots of information here that is useful to you - welcome again and I'll look for you around, Lulu
For starters, symptoms don't normally appear all over the body. It would take a large number of lesions located in a variety of places to make that happen.
Concentrating while driving should not make your legs go into spasms and be useless.
The majority of cardiac symptoms are not related to MS. A local neuro here told me recently that less than 5% of people with MS have autonomic problems (heart, breathing, etc - all those automatic body functions). Those would come from brain stem lesions. Passing out is also very rare with MS.
The vertigo you have sounds miserable and could be vestibular or neurologic in nature. either way, I hope it remains controlled for you.
Some of the things you experience could be MS but it might take the doctors quite awhile to find a definitive answer. I'm so sorry you are stuck in limbo with these worries.
I hope you will find lots of information here that is useful to you - welcome again and I'll look for you around, Lulu
yep red, im afraid they do. you cant keep nothing to yourself here lol. and it seems you cant get the treatment deserved either! having a bad day today with muscle tightness from chest down. feels like my legs never woke up this morning.
I'm sorry, for some reason I thought you had mentioned a disc problem.
I don't know how records are done there in the U.K. Does every doctor have access to your records?
How aweful
Red
I don't know how records are done there in the U.K. Does every doctor have access to your records?
How aweful
Red
i wish that the childhood issues had been a choice not to have on my medical records. i was young when it all came about, so was on there before i even realsed. i dont have a choice about that. and i so totally agree with u that its to easy to blame issues since on the fact.
also, when they mentioned the referal to see a psychiatrist, i was defo more than happy for this to happen. ive no doubt, neither does my husband that this is not some kind of samatic problem. in fact it might be easier in some degree if it was.i in fact see the psychiatrist early in january. i see that alot of people here have had to do the same and see it as a possitive thing. bring it on lol.
not sure what u ment by my spinal problem. i dont have one.
thanks again.
also, when they mentioned the referal to see a psychiatrist, i was defo more than happy for this to happen. ive no doubt, neither does my husband that this is not some kind of samatic problem. in fact it might be easier in some degree if it was.i in fact see the psychiatrist early in january. i see that alot of people here have had to do the same and see it as a possitive thing. bring it on lol.
not sure what u ment by my spinal problem. i dont have one.
thanks again.
Have they ruled out your spinal issues?
I also wanted to comment on the abuse issues. I would not discuss or even tell my doctor about that, they don't need to know about that. It's too easy for them to blame things on that.
As far as the request for you to see a psychiatrist or have some psyshological testing done---- I highly recommend that you comply with this. Many people here have had the same referral, it's part of the process of things they have to rule out. At the very least it will indicate your willingness and compliance with the medical profession. All of your work you have done on your issues will help the psychologist see that your illness is a medical one.
Red
I also wanted to comment on the abuse issues. I would not discuss or even tell my doctor about that, they don't need to know about that. It's too easy for them to blame things on that.
As far as the request for you to see a psychiatrist or have some psyshological testing done---- I highly recommend that you comply with this. Many people here have had the same referral, it's part of the process of things they have to rule out. At the very least it will indicate your willingness and compliance with the medical profession. All of your work you have done on your issues will help the psychologist see that your illness is a medical one.
Red
hi red. thank you for getting back to me. i dont actually remember how long it took for my father to get his diagnosis, i was quite small. he dont speak about it either unfortunately.
the doctors have in fact described the fits as seizures and they started me on gabapentin. i since have the understanding that this drug is for the treatment of epilepsy amounst other things. ive not got epilepsy they say.
i have changed drs once already about 18 months ago. but they too seem to believe that medicine is too much of a science the be able to treat symptons as a whole, instead of a seperate symptons, as they do. in their words lol. i believe the nhs service is failing people like me. but thats another issue i guess. i only wish i could find a dr that was as concerned as i am. im actually quite frightened by it all.
i am currently using a chair whilst out and about as being upright for a length of time makes me feel more un-stable. the dizzyness seems to get worse and i loose the feeling in my legs along with a jelly like feeling.
thank u again. its very much appreciated
vicky
the doctors have in fact described the fits as seizures and they started me on gabapentin. i since have the understanding that this drug is for the treatment of epilepsy amounst other things. ive not got epilepsy they say.
i have changed drs once already about 18 months ago. but they too seem to believe that medicine is too much of a science the be able to treat symptons as a whole, instead of a seperate symptons, as they do. in their words lol. i believe the nhs service is failing people like me. but thats another issue i guess. i only wish i could find a dr that was as concerned as i am. im actually quite frightened by it all.
i am currently using a chair whilst out and about as being upright for a length of time makes me feel more un-stable. the dizzyness seems to get worse and i loose the feeling in my legs along with a jelly like feeling.
thank u again. its very much appreciated
vicky
It really does sound like something is wrong. As you know from your husband having MS, it can take a very long time for diagnosis. The fact that they were able to find a lesion should be significant I would think. When you talk about having 'fits', are you having seizures? Have they started treating you for that?
Have you thought of starting with a new doctor? It seems that you haven't been taken seriously by your caregivers. I would start there, you deserve to have a doctor that takes you and your pain seriously.
Are you in a wheelchair now?
Red
Have you thought of starting with a new doctor? It seems that you haven't been taken seriously by your caregivers. I would start there, you deserve to have a doctor that takes you and your pain seriously.
Are you in a wheelchair now?
Red
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