Aa
Too old for MS
Hi everyone. I have been off the forum for a little while because I saw the MS specialist and he said he is certain I do not have MS for the following reasons:
1. If I had MS since I was in my late 20s when my first episode happened, I would have a lot more lesions by now.
2. I am too old to be diagnosed with MS (53)
3. He ordered a repeat of the brain MRI w/o contrast (then during the procedure the radiologist decided to do it with contrast for some reason) and the neuro said it was normal. (does anyone know why the radiologist overode the dr. orders?) He said a repeat of the spine would be unnecessary.
4. My fatigue is not like any of his MS patients fatigue.(I described it as so tired I could barely get up the stairs and too tired to talk).
5. The only thing wrong with me is 4th cranial nerve palsy that is "idiopathic". It is why I recently experienced double vision. He said it is likely that it will correct itself.
6. My right leg weakness appears to be physcosomatic and related to some deep seated childhood abuse that I am not even aware of. He said that even if I went to a psych it would likely do no good because I was" hiding it from myself".
7. His "exam" was very brief. One of the things he had me do was take (literally) 2 steps to the door and turn. he said "you walk fine". He asked me to walk on my heels and I can't. he had me walk on my toes and I could get up on them but can't walk on them. He checked only 2 reflexes- knee and elbow.
All my other symptoms were ignored except my sleep problems. He spent a good amount of time telling me about the hospital sleep workshop and said that is why I am fatigued because I don't sleep well.
His "second opinion" basically consisted of reading my other neuro's notes and backing up his diagnosis.
I guess I am at a loss and feel so dismissed. I don't even know where to go from here. Do you guys think I should accept his diagnosis? If not, how can I find a truly good neuro? He is listed on the MS Society list. I have Kaiser and anyone out of Kaiser I have to pay fully out of pocket...I really feel lost at the moment. I think I am getting depressed from all this.
Thanks for any ideas and help!
1. If I had MS since I was in my late 20s when my first episode happened, I would have a lot more lesions by now.
2. I am too old to be diagnosed with MS (53)
3. He ordered a repeat of the brain MRI w/o contrast (then during the procedure the radiologist decided to do it with contrast for some reason) and the neuro said it was normal. (does anyone know why the radiologist overode the dr. orders?) He said a repeat of the spine would be unnecessary.
4. My fatigue is not like any of his MS patients fatigue.(I described it as so tired I could barely get up the stairs and too tired to talk).
5. The only thing wrong with me is 4th cranial nerve palsy that is "idiopathic". It is why I recently experienced double vision. He said it is likely that it will correct itself.
6. My right leg weakness appears to be physcosomatic and related to some deep seated childhood abuse that I am not even aware of. He said that even if I went to a psych it would likely do no good because I was" hiding it from myself".
7. His "exam" was very brief. One of the things he had me do was take (literally) 2 steps to the door and turn. he said "you walk fine". He asked me to walk on my heels and I can't. he had me walk on my toes and I could get up on them but can't walk on them. He checked only 2 reflexes- knee and elbow.
All my other symptoms were ignored except my sleep problems. He spent a good amount of time telling me about the hospital sleep workshop and said that is why I am fatigued because I don't sleep well.
His "second opinion" basically consisted of reading my other neuro's notes and backing up his diagnosis.
I guess I am at a loss and feel so dismissed. I don't even know where to go from here. Do you guys think I should accept his diagnosis? If not, how can I find a truly good neuro? He is listed on the MS Society list. I have Kaiser and anyone out of Kaiser I have to pay fully out of pocket...I really feel lost at the moment. I think I am getting depressed from all this.
Thanks for any ideas and help!
Hi I am almost 62, female.I was told I have a autoimmune disorder and was sent to a rheumatologist he said I have sjogren .Well I have no dry eyes, but I do have a dry mouth. My legs hurt all the time. I feel like my muscles are deteriorating .I was sent to a neurologist and my nerves are ok.I have been reading and was wandering if I have MS.Like others I was told I was told to be diagnosed for MS.Any help will be appreciated hanging in there Debbie
Mike-
Thanks for sharing that. I wish I could go to your neuro...he sounds more reasonable than mine.
Thanks for sharing that. I wish I could go to your neuro...he sounds more reasonable than mine.
Just wanted to say I am a male and was diagnosed almost 2 years ago at 53. My Neuro said "if you have MS, you have MS".
Mike
Mike
Thanks Bob for the insight. I assume the radiologist might have wanted to see if the few lesions I had on the last MRI were active or not then since the contrast wasn't ordered by the doctor.
I think that there may be a lot of people who were not diagnosed until later years maybe due to the delay of diagnosis.
I think once I have my psych evaluation in the fall I will be able to move forward. I appreciate the definitions you gave me.
I think that there may be a lot of people who were not diagnosed until later years maybe due to the delay of diagnosis.
I think once I have my psych evaluation in the fall I will be able to move forward. I appreciate the definitions you gave me.
Contrast does not help you see any lesions better. It helps you determine if the lesion is active (less than about 40 days old.) It really shows that the Blood Brain Barrier is still leaking (inflamed endothelium) and that the Gadolinium is leaking out of the blood vessel.
As for age, I was diagnosed at 48. I am male and had no unique OC Bands in CSF. I had 5 lesions, and at the time of diagnosis had a bout of Optic Neuritis and developed Trigeminal Neuralgia. Since then I had a second case of Optic Neuritis and had to have Devic's Disease (Neuromyelitis optica - NMO) ruled out with a NMO-IgG test. On my latest MRI, no new lesions, but the neuro says since I still have spasticity and have had a relapse, he is sure I have MS and should stay on my meds and DMD.
If your doctor suggesting a Conversion or Somatization Disorder, you might want to take a look at: http://www.dmacc.edu/Instructors/tkwilson2/AbSomatoformDSM.pdf
Most of these can be cleared by a psychiatrist pretty quickly. That would force the neurologist to reevaluate is statements.
Bob
As for age, I was diagnosed at 48. I am male and had no unique OC Bands in CSF. I had 5 lesions, and at the time of diagnosis had a bout of Optic Neuritis and developed Trigeminal Neuralgia. Since then I had a second case of Optic Neuritis and had to have Devic's Disease (Neuromyelitis optica - NMO) ruled out with a NMO-IgG test. On my latest MRI, no new lesions, but the neuro says since I still have spasticity and have had a relapse, he is sure I have MS and should stay on my meds and DMD.
If your doctor suggesting a Conversion or Somatization Disorder, you might want to take a look at: http://www.dmacc.edu/Instructors/tkwilson2/AbSomatoformDSM.pdf
Most of these can be cleared by a psychiatrist pretty quickly. That would force the neurologist to reevaluate is statements.
Bob
RUN from this idiot...........my husband's cousin was jus DX at 75 and no prior s/s..........
I have a book on MS that you should read........well, you might want to shoot this "cornflake" if I do LOL.....but it will answer lots of your questions, will message you later when I find it.
neuro's don't dx repressed memories, he's on a dream trip..................that remark alone would have sent me walking out of his office........
don't give up til you find someone..............took me 3 neuro's to find a good one
I have a book on MS that you should read........well, you might want to shoot this "cornflake" if I do LOL.....but it will answer lots of your questions, will message you later when I find it.
neuro's don't dx repressed memories, he's on a dream trip..................that remark alone would have sent me walking out of his office........
don't give up til you find someone..............took me 3 neuro's to find a good one
See the thread "D.U.M.B. Doctors" for an eye opening laugh. I was diagnosed @ age 50 after some 20+ years of symptoms.
Jule- Thanks for that. No I don't think they are taking me seriously. If the 2nd neuro gave me a real exam, I would have respected his opinion a lot more.
JJ- you always make me laugh :D I finally got a psych appointment. I have to wait until the fall but like you said JJ- get it out of the way. Thanks for all your insight!! I guess I will just keep trying to find answers.
Dennis- I only have 2 lesions that the first radiologist could not "rule out" as demyelating (sp?). Do you think your psych test helped with your diagnosis?
Iambus- Going to a dr. outside looks to be the next step. I just don't have the $$ right now.
Willowoman- I have had all the other tests for Lupus, B-12 etc. So I just don't know. Everything shows within normal ranges. I have the 2 lesions that showed on my brain, but my LP was fine too.
Debbie- Really? Well it seems that maybe being "too old" is maybe a bunch of whooweee. It sure seems to be.
Thanks you guys for helping me.
JJ- you always make me laugh :D I finally got a psych appointment. I have to wait until the fall but like you said JJ- get it out of the way. Thanks for all your insight!! I guess I will just keep trying to find answers.
Dennis- I only have 2 lesions that the first radiologist could not "rule out" as demyelating (sp?). Do you think your psych test helped with your diagnosis?
Iambus- Going to a dr. outside looks to be the next step. I just don't have the $$ right now.
Willowoman- I have had all the other tests for Lupus, B-12 etc. So I just don't know. Everything shows within normal ranges. I have the 2 lesions that showed on my brain, but my LP was fine too.
Debbie- Really? Well it seems that maybe being "too old" is maybe a bunch of whooweee. It sure seems to be.
Thanks you guys for helping me.
Hi,
Just a quick note... I was diagnosed in 2008 at the age of "51" so don't believe anyone that tells you you're too old. Good luck!!!!
Debbie
~live as if all your dreams came true~
Just a quick note... I was diagnosed in 2008 at the age of "51" so don't believe anyone that tells you you're too old. Good luck!!!!
Debbie
~live as if all your dreams came true~
COMMUNITY LEADER
Julie OMG!!!
1. If I had MS since I was in my late 20s when my first episode happened, I would have a lot more lesions by now.
A) FALSE there isn't an expected set number of lesions, its the unknown factor and MS has been known to go dormant for a number of years
NOTE: this is a contradiction to no3 here he is saying you have lesions, where are they and what does the radiology report say, get the scans!
2. I am too old to be diagnosed with MS (53)
A) FALSE people upto 75 have been dx with MS 20-40 is the most common age group but MS can and is dx at any age!
3. He ordered a repeat of the brain MRI w/o contrast (then during the procedure the radiologist decided to do it with contrast for some reason) and the neuro said it was normal. (does anyone know why the radiologist overode the dr. orders?) He said a repeat of the spine would be unnecessary.
A) No idea but it seems unusual. FALSE there is no bases to assume that premise
4. My fatigue is not like any of his MS patients fatigue.(I described it as so tired I could barely get up the stairs and too tired to talk).
A) FALSE that is exactly how MS fatigue is (by the majority) described!
5. The only thing wrong with me is 4th cranial nerve palsy that is "idiopathic". It is why I recently experienced double vision. He said it is likely that it will correct itself.
A) FALSE idiopathic means of unknown origin, he cant know that, he's just making an assumption with his fingers crossed.
6. My right leg weakness appears to be physcosomatic and related to some deep seated childhood abuse that I am not even aware of. He said that even if I went to a psych it would likely do no good because I was" hiding it from myself".
A) FALSE FALSE FALSE so its 'conversion disorder' classic findings associate sexual abuse/physcial abuse in childhood with CD but this corn flake cant believe that never happened to you so you must also have repressed memory too, cause he cant be wrong sheesh give me strength from stupidity!
7. His "exam" was very brief. One of the things he had me do was take (literally) 2 steps to the door and turn. he said "you walk fine". He asked me to walk on my heels and I can't. he had me walk on my toes and I could get up on them but can't walk on them. He checked only 2 reflexes- knee and elbow.
A) Exam what exam, I dont believe it would of mattered what clinical sx you had he was not going to see it because he believes its mental health!
Sheesh my corn flake had me hit the ground twice, hmmm thats after walking like a bouncing string puppet for 5 minutes, I nearly kicked his head numerous times (sorry i didnt lol) when my left leg repeatedly demonstrated the hyper reflex, Then repeatedly demonstrated clonus with reactive muscle spasms rippling one after the other upto my groin, it really looked and felt like I was being tazered.
So much more but still my corn flake said i didn't have a 'neurological condition' and in shock I asked about my tremor he stated "anyone can shake their hand" hmmmmm if I wasn't impersonating a gold fish I might of said all the socially inapropriate thoughts that were running through my head. ohhh I just remembered my first corn flake said i didn't have lesions and this corn flake acknowledged I had them but desided they were silent lol
Run, wobble or crawl to a psych and get the mental health garbage OFF the possible dx list, at the very least it will be good for you to know its not mental health! In the mean time find a neuro that has a good reputation, you may need a bit of help and i'm sure dx MSers who trust their neuro will help you to find one in your state.
If i can find it there's a huge post on 'Lies my neuro told me', it will leave you with no doubts that you are not alone in experiencing an IDIOT with credentials!
HUGS................JJ
1. If I had MS since I was in my late 20s when my first episode happened, I would have a lot more lesions by now.
A) FALSE there isn't an expected set number of lesions, its the unknown factor and MS has been known to go dormant for a number of years
NOTE: this is a contradiction to no3 here he is saying you have lesions, where are they and what does the radiology report say, get the scans!
2. I am too old to be diagnosed with MS (53)
A) FALSE people upto 75 have been dx with MS 20-40 is the most common age group but MS can and is dx at any age!
3. He ordered a repeat of the brain MRI w/o contrast (then during the procedure the radiologist decided to do it with contrast for some reason) and the neuro said it was normal. (does anyone know why the radiologist overode the dr. orders?) He said a repeat of the spine would be unnecessary.
A) No idea but it seems unusual. FALSE there is no bases to assume that premise
4. My fatigue is not like any of his MS patients fatigue.(I described it as so tired I could barely get up the stairs and too tired to talk).
A) FALSE that is exactly how MS fatigue is (by the majority) described!
5. The only thing wrong with me is 4th cranial nerve palsy that is "idiopathic". It is why I recently experienced double vision. He said it is likely that it will correct itself.
A) FALSE idiopathic means of unknown origin, he cant know that, he's just making an assumption with his fingers crossed.
6. My right leg weakness appears to be physcosomatic and related to some deep seated childhood abuse that I am not even aware of. He said that even if I went to a psych it would likely do no good because I was" hiding it from myself".
A) FALSE FALSE FALSE so its 'conversion disorder' classic findings associate sexual abuse/physcial abuse in childhood with CD but this corn flake cant believe that never happened to you so you must also have repressed memory too, cause he cant be wrong sheesh give me strength from stupidity!
7. His "exam" was very brief. One of the things he had me do was take (literally) 2 steps to the door and turn. he said "you walk fine". He asked me to walk on my heels and I can't. he had me walk on my toes and I could get up on them but can't walk on them. He checked only 2 reflexes- knee and elbow.
A) Exam what exam, I dont believe it would of mattered what clinical sx you had he was not going to see it because he believes its mental health!
Sheesh my corn flake had me hit the ground twice, hmmm thats after walking like a bouncing string puppet for 5 minutes, I nearly kicked his head numerous times (sorry i didnt lol) when my left leg repeatedly demonstrated the hyper reflex, Then repeatedly demonstrated clonus with reactive muscle spasms rippling one after the other upto my groin, it really looked and felt like I was being tazered.
So much more but still my corn flake said i didn't have a 'neurological condition' and in shock I asked about my tremor he stated "anyone can shake their hand" hmmmmm if I wasn't impersonating a gold fish I might of said all the socially inapropriate thoughts that were running through my head. ohhh I just remembered my first corn flake said i didn't have lesions and this corn flake acknowledged I had them but desided they were silent lol
Run, wobble or crawl to a psych and get the mental health garbage OFF the possible dx list, at the very least it will be good for you to know its not mental health! In the mean time find a neuro that has a good reputation, you may need a bit of help and i'm sure dx MSers who trust their neuro will help you to find one in your state.
If i can find it there's a huge post on 'Lies my neuro told me', it will leave you with no doubts that you are not alone in experiencing an IDIOT with credentials!
HUGS................JJ
So sorry you are gettting depressed from all this - but totally normal!
Keep looking for a good neuro - this one does NOT SOUND very good - Sounds lazy to me!
Good luck. and hang in there -
Carol
Keep looking for a good neuro - this one does NOT SOUND very good - Sounds lazy to me!
Good luck. and hang in there -
Carol
Wow..I was dx'd at 50. My doc told me it would be unusual to be dx'd that late but then he looked at my MRI and I had many "classic" MS lesions. He actually exploded yelling about how this hadn't been found before since I've had it for about 25 years (5 years ago).
Your MRI was clean, right? Have you been to a rheumatologist? There are so many other diseases that can cause MS like symptoms it is simply amazing. I understand that the criteria for a diagnosis of MS is a minimum of 2 brain lesions, which it sounds like you don't have. That's not a bad thing to not have MS. In my book, that'd be pretty great :)
But again, there are other diseases that can cause similar symptoms i.e. lupus.
Perhaps the radiologist ordered with contrast to hilight if there were new lesions showing up, which from you say there are none at all...I hope I got that right.
Your MRI was clean, right? Have you been to a rheumatologist? There are so many other diseases that can cause MS like symptoms it is simply amazing. I understand that the criteria for a diagnosis of MS is a minimum of 2 brain lesions, which it sounds like you don't have. That's not a bad thing to not have MS. In my book, that'd be pretty great :)
But again, there are other diseases that can cause similar symptoms i.e. lupus.
Perhaps the radiologist ordered with contrast to hilight if there were new lesions showing up, which from you say there are none at all...I hope I got that right.
He sounds like a REALLY bad dr. I know it can be tough with insurance and cost but when you have a chance, I would definitely go see another dr!!! (I've been in the same boat as you and it can be depressing and fustrating and difficult to wait but keep trying!) I went and saw a neurologist who is listed as an MS specialist on the MS socitey's list of drs in Los Angeles and he acted almost the same way as your dr did :/ It's terrible that drs can be so bad! Some of the things that dr said to you are so absurd! don't give up! Keep looking for answers. Eventually you will find a good dr!
Sounds to me like that doctor is a real jerk! I am posting according to your points.
1) I have had MS since late 30's and have only about 6 lesions which are atypical for MS ( now 61)
2) I was just DX'ed with MS and my father wasn't DX'ed until 65.
3) ???? why the change but no big deal.
4) I have fatigue just like your at times ( during bad flares)
5) "Idiopathic" means unknown cause which by no means it could not be from MS.
6) If he said going to a shrink would be of no use for this it really means he doesn't want to to find out that this is not psychosomatic.
7) if you can't walk on your heels or toes it indicates that something is going on. I can't walk on my heels either and with toes my balance is completely shot so that I can't go more than 2 steps.
Dennis
1) I have had MS since late 30's and have only about 6 lesions which are atypical for MS ( now 61)
2) I was just DX'ed with MS and my father wasn't DX'ed until 65.
3) ???? why the change but no big deal.
4) I have fatigue just like your at times ( during bad flares)
5) "Idiopathic" means unknown cause which by no means it could not be from MS.
6) If he said going to a shrink would be of no use for this it really means he doesn't want to to find out that this is not psychosomatic.
7) if you can't walk on your heels or toes it indicates that something is going on. I can't walk on my heels either and with toes my balance is completely shot so that I can't go more than 2 steps.
Dennis
I can only address some of points of interest.
I first started having sx in my 20's but not dx until almost 20 yrs later. I have 3 lesions and I walk just fine and have no sx other than heat intolerance. I have no weakness, no fatigue, not nothing except heat intolerance. The point is everyone is different and everyone presents differently. There is no one size fits all.
Not sure why the radiologist would override your neuro but w or w/o contrast shouldn't effect the dx of MS if you have it. Contrast just helps them see newer/active lesions better, it doesn't prevent the radiologist from seeing older lesions so that shouldn't make a big difference.
I would get a real second opinion. Sounds like they are not taking you seriously. I am sorry.
Julie
I first started having sx in my 20's but not dx until almost 20 yrs later. I have 3 lesions and I walk just fine and have no sx other than heat intolerance. I have no weakness, no fatigue, not nothing except heat intolerance. The point is everyone is different and everyone presents differently. There is no one size fits all.
Not sure why the radiologist would override your neuro but w or w/o contrast shouldn't effect the dx of MS if you have it. Contrast just helps them see newer/active lesions better, it doesn't prevent the radiologist from seeing older lesions so that shouldn't make a big difference.
I would get a real second opinion. Sounds like they are not taking you seriously. I am sorry.
Julie
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
