help in limbo!

[lynnebc]

for almost 3 years now been trying to figure out whats going on with me I walk to the right and have been walking on the side of my right foot so Im able to get around. if I keep my right foot flat on the floor I walk off to the right and my left leg crosss in front of me almost tripping me( I cannot tandom walk and fail the rhomberg test also have brisk reflexs) I have been cleared of it being a vestubular problem by 3 ents. I have lost the swing in my right arm, have terrible hand spasms and incontinence/bowel problems and constant pins and needles in my legs hand and feet.( the eng shows slight neuropathy but not much. I also had the full battery of tests and have been diagnosed with a cognative disorder so bad that Im unable to work. I have had MRI s and nothing shows up other than ddd, arthritis in the neck and had stenosis which I had surgery for but still have the problem. I also have essential tremor that I have had since I was a child Im a 49 year old female any suggestions? nuerologist told me its just old age and to use a cane? neurosurgeon thinks MS any input? I also am very sensitive to the heat. I apologize this is a similar post to the last but I cannot figure out how to delete the past post.

[lynnebc]

Hi JJ
Sorry yes looking back at it I had a hard time reading it as well. My apologies. I wanted to get it all down before I forgot what I wanted to say :)

At this point I have no options I cannot afford a minimum of $400 just to walk in the door at a neurologists and my insurance has no one anywhere even remotely close that can seeme.. Texas neurologist are picky on the insurance they take even the one I was telling you about no longer takes my insurance. not that I would want to go to him again anyway :)

Thank you so much for your input! I m hopefully we can get better insurance soon. Hope you are having a wonderful day! Thanks again

[supermum_ms]

Can you please make sure you brake your posts into smaller blocks, a large percentage of people with MS have visual and cognitive issues, that make the large blocks of text really hard and sometimes impossible to read.  ta :o)

Um you know how I said something doesn't sound right, well I've got to say that it sounds even more so now, the neuro you saw sounds at best neglectfully incompetent! I really think you need to get a second opinion, and because the question of MS is there, it would be better if the neuro actually specialised in MS.

Insurance in your country is way over my head, but others have experienced difficulty finding a neuro that takes their insurance too. I have no idea what the rules allow but if you can see specialists in different states, i'd consider it and even try enlisting the help of your more friendly GP or neurosurgeon, to help you locate a different neurologist. I'd also be getting copies of all your records eg brain and spinal MRIs, blood tests, cognitive tests etc every test that you've had.

I honestly could not even guess to what is the cause of everything, so many things you've mentioned do sound MS-ish enough to me, to have MS on your list of possibilities. So I do think you need to get MS investigated properly but as I said before, MS does have many mimics and you've got a few things going on, as well as conflicting information. I really think you need someone who knows more than a competent general neurologist and its probably going to take a bit of time to work it all out, so hang in there!  

Cheers..........JJ

[lynnebc]

oh forgot to mention my husband (an RN) thinks it was a stroke but would that cause the symptoms that are popping up now and also nothing showed on any of the mris I have copy's of them all and the one that the neurologists said showed many mini strokes the radiologist that read it made no mention of Any problems other than one place could be demylating but the MRI's after that do not mention it???

[lynnebc]

JJ...
thanks for looking! isn't that always the way when your looking for it you cant find it lol  I have seen some scissor gates videos and will check out the video you sent thank you so much...as far as the cognative issues I have trouble concentrating and finding the right words I have memory loss and kinda get lost in the middle of a sentence and after they did the battery of test (they did the first test then because it showed some major problems they had me come back and do the 4-6 hour deal)  when describing it to me she said it was a disorder like dementia or early onset altheimers but she believed I needed to see a neurologist I do not believe she was actually saying I had those diseases but Im unsure. (problem is here I have seen the one that labeled it old age and that is the only one in my area of Texas that takes my insurance :(  as far as the hand spasms they just started about a year ago they are terrible they lock my hands into terrible positions one time it was like my knuckle had poped out the other side of my hand right above the palm the doc gave me steroids but that did not help actually I don't know it may of even made it worse they are not constant I will be fine for awhile then they will start acting up again. the heat thing is if I take a hot shower or bath I become very shaky weak and dizzy kinda out of it and have to lay down and have fallen same thing happens if Im out side in the heat. The surgery I had was a acdf I had a slight stenosis in my neck and the neurosurgeon was hopeful that it may help my gait. but it did not. My neurosurgeon has been very up front with me and has said MS for awhile we did the surgery because it would of needed to be done down the road anyway so he figured he could rule it out for me he has refered me to a clinic that specializes in ms and also neuro muscular diseases but my insurance wont pay. my GP is unsure and cant do much cause no other specialists to send me to,,,, oh and get this...the neurologist I saw ...my GP called and talked to him and said I don't think its old age please see her again...well he would not even watch me walk and the first MRI I had the ent had to call the same neurologist to have it done then he calls and tells me over the phone that I have many mini strokes and to come see him the following week when I get there he says oops sorry my bad I read it wrong your fine ?????  Your helping I appreciate all the info you have given me as it looks like Im gonna have to figure out whats wrong myself lol thanks again

Mariedc
Hi I was tested for b12 but I cannot tell you what the levels were will check with the doc. I appreciate your information!!! I hope your daughter gets better soon! I used to take  b12  in a vitamin along time ago but it made me very sick and when I went to the doc he told me I overdosed on it and to just use the multi vitiams of course this was when I was in my 20's many moons ago :) thanks again

[mariedc]

Have you been checked thoroughly for a vitamin b12 deficiency?  It could cause many of the symptoms you discuss.  The cutoff for b12 in the US is too low.  You should be above 450, not the 200 or 180 many labs use.  Even if you are above, given your symptoms your methylmalonic acid and homocysteine levels should be checked as serum B12 levels can be normal in people with absorption problems that leave them effectively deficient.  By the way, failing the Romberg test is very common in those with a b12 deficiency.

I wish you luck--I have a 20 year old daughter with some of the symptoms you describe.  We are testing now for B12, but I am rather upset this wasn't done when she first got these symptoms. Look up "Could it be Bitamin B12" on the web for my information.  My daughter often has to use a cane--at least no one has said this is age related! Honestly, at 45....

[supermum_ms]

I've just spent nearly 5 hours looking for the darn thing and can't locate the clip I had, i was close it's called 'scissor gait', unfortunately this is a poor substitute for the one that demonstrated it, sorry I couldn't find it for you!

http://stanfordmedicine25.stanford.edu/the25/gait.html

hmmmm my pea brain didn't register the cognitive part, what cognitive disorders do you have? In regard to the hand spasms, are you saying that is additional to and not part of your childhood tremor? You only said "very sensitive to the heat" which is a common complaint but it isn't the same as "heat intolerance", would you mind explaining further?

DDD, stenosis, and peripheral neuropathy can all be interconnected with each other, bladder and bowel issues, spasms, pins and needles, pain, are all recognised sx's. Even Rhomberg is related, because its a proprioceptive sign and that typically happens when you have to rely on your visual information, because the sensory system from your feet it faulty.

http://emedicine.medscape.com/article/1265453-overview

Something doesn't sound right though, either the evidence of your dx issues are significant and the cause of your sx's, which warranted surgery (type?) or they are only mild, so would not be the cause nor require any surgery. It sounds to me, that one specialist is saying something totally opposite to the other and I really think it would be best to get a second opinion(s)!  

lol i'm not sure i'm actually helping any but your welcome :D

Cheers..........JJ
    

[lynnebc]

Thank you so much I appreciate you replying and look forward to seeing the clip :) I  have to admit I agree with you and I was a bit insulted when I got the old age get a cane diagnosis :) yes they have diagnosed my tremor as essential tremor. I think the reason he is not looking at the ddd or neuropathy is because neither is very bad in my case it is from my understaning minimal at this point.  my GP was also surprised that nothing showed up as he thought it was CNS related and not the neuropathy the neuro surgeon is the one that did the surgery but that was after all my symptoms and I think he was hopeful that the surgery would cure me but it did not.. so you think I should be looking more into the DDD and the peripheral neuropathy? I have looked up both but I did not know it caused hand spasms cognative disorders, incontinence and heat intolerance maybe I need to look further on the subjest :) Thank you again so much for your reply I greatly appreciate it!! Hope you are doing well

[supermum_ms]

I'm always confused when someone under 65, gets their 'what ever' blamed on old age, seriously if it was just normal, wouldn't there be a lot of under 50's people doing it too? Off the top of my head, there is a neuro site with different clips of abnormal gaits, one I remember seeing sounds very close to what you've described, scissor walk is stuck in my mind but i'm not sure if thats right, so i'll see if I can find it and get back to you.

Firstly the tremor since childhood will be more likely a genetic benign tremor, and because its been since childhood, I think its probably not related to what's only been happening for the last 3 years. MS has many mimics, and from what i understand that can happen with degenerative disc disease, peripheral neuropathy, and even the spinal surgery itself, any of those could feasibly be the most likely explanation of your sx's.

Though i can't help wondering why your neurosurgeon would be thinking it's MS, and not related to your spinal degeneration, surgery etc. He didn't by chance do the surgery? I always think that for MS to be a likely cause, there needs to be an absence of evidence of other (mimicing) conditions that also cause those sx's, and some evidence of MS eg MRI brain and or spinal cord lesions, ON, LP etc.

I gather from what you've said, you have evidence of other conditions and nothing that would typically indicate MS as a possibility, so if I'm honest, I am more inclined to think it's probably not MS.

It's very late over my side of the world, so i'll have to get back to you with that clip i mentioned, sometime tomorrow.

Cheers..........JJ