Can't get a diagnosis

[UpLate]

I hope I'm in the right place.

I've been getting numbness, tingling, pins and needles, weakness and pain in my hands and lower extremities. I have ataxia, foot drop, vertigo and tinnitus. I've been having falls (not good with osteoperosis) my legs just go from under me. My Dr sent me to a neurologist who did uncontrasted brain and cervical MRI's, brain came back clear and the cervical "a moderately large right sided posterior osteophytic complex at C4/C5 causing some mild ventral compression of the cord" whatever that means. He isn't worried, said not MS and that was that.

I had an injury to my neck about 20 years ago, not from anything I just woke up one morning, stood up and then couldn't move without excrutiating pain, the hospital xrayed and sent me for physiotherapy, no explaination was given and I still don't know what caused it.

Could anyone please help me with any information you might think is relavant, I can't get a diagnosis, no one will treat me without a diagnosis and I can't even get proper pain management, I'm trying to stay on top of it with what I can get over the counter which as you can imagine isn't doing much and it's still getting worse. I can't work anymore and am struggling on social security, I'm only 40.

[MSWIFE1]

I am by far an expert but glad they said it wasn't MS. However I think they would need to do a spinal tap as well to help in determining. Hopefully someone will chime in here and help you with the appropriate questions. If you are on social security wouldn't you have to have some sort of diagnosis to be declared disabled at 40 yrs of age. Does the numbness, tingling, etc come and go or is it constant? Have they tested for Lyme Disease?

[Bonnette]

UpLate, I'm sorry to say that it is not at all unusual to suffer odd, unexplained symptoms of the kind you describe for years before a diagnosis can be arrived at. An "osteophytic complex" is basically a region of bony arthritic spurring, and "mild ventral compression" means that the bone spurs are impinging to a small degree on the cord structure; this, in itself, could cause some of the symptoms you're experiencing...but in the absence of demyelinating lesions imaged on MRI, it is not likely at this point that a clinician would diagnose MS. Your experience of 20 years ago might have been a first episode of MS, but you might also have experienced a disc herniation or fracture that has since resolved (with lingering pain as an aftermath).

The dilemma you are in is maddening, as without a diagnostic label it's difficult for you to be treated for your symptoms. The only thing I might suggest, would be for you to see a neurologist and be worked up extensively with blood tests (to rule out MS mimics), additional MRIs (perhaps with contrast), nerve conduction studies and testing for evoked visual potentials (EVP), and possibly lumbar puncture. I wish there were a more straightforward way, but MS is diagnosed principally by excluding other ailments. Sometimes diagnosis is relatively easy, but often it's a time-consuming, worrisome and expensive process; indeed, on MS forums, the period between the onset of symptoms and final diagnosis is often referred to as "limbo-land."

While you might not have MS, you are dealing with difficult issues and the closer you can get to an understanding of what's causing your symptoms, the better. Your doctor doesn't think you have MS, but he doesn't know what the problem is, either...I think that you would be wise to seek a second opinion. And best wishes, I have been through a limbo period and it is very upsetting and frustrating.

[marycsm77]

Out of curiosity when you had your cervical MRI did you have a flex/extend MRI? My "regular" cervical MRI showed herniations and osteophytes with some compression, but it wasnt until the flex/extend MRI was done that showed on extension the severe stenosis showing the cord was much more compressed than originally thought. Every time i looked up so to speak i was having like micro traumas to my spinal cord, to point I could barely walk.

Before that I had lots and lots of tests to r/o MS.

Just a thought.

good luck. yes get another opinion and follow up, good advice.

[UpLate]

The tingling/numbness/extremity pain seems to be part of what I've been left with from when I had some sort of flare up recently, it also left me with permanant weakness in my lower legs, ataxia and bladder dysfunction so I have it in varying degrees of severity every day.

They're still squabling over whether we have Lyme disease here or not (Australia).

I've just realised I'm on an international board, I should explain social security here is all government payments including unemployment, family, carer, disability, student, apprenticeship, farmer etc... and yes it is hard to get.

I am curious about what caused that injury 20 years ago now, I wanted to have it looked into when I started getting migraines but I got brushed off. Is arthritic spuring the same as arthritis? I was told I didn't have arthritis. As a side note I got brushed off on some other really nasty symptoms I had back then too, they turned out to be coeliac disease (and by then osteoporosis), multiple drs and 2 gastrointerologists missed it, I only got diagnosed a few years ago. Looks like I'm in for another battle like that one then.

Yes it is maddening, I wish I could just ignore it, in hindsight maybe I shouldn't have tried to for so long and been more insistant, it's interfering with everything I do now. I have the list of tests the neurologist did and they were all negative, biochemistry, haematology, thyroid, B12, folate, D, immunoglobulin and a nerve conduction study. At least I know my vitamin levels are ok. What are evoked visual potentials?

Also my optometrist has refered me to an eye clinic, I should get a call for an appointment from them by about the time I'm 50, I have incredably dry bloodshot eyes and funny vision thingys I don't know how to describe, pereferal flashes a bit like mirgaine auras and a blank spot in the middle of my right vision I get when I'm tired, I also tend to be startled by things sneaking up on me from the left, in spite of being short sighted I'm having a little trouble with focusing on print and can't read labels which is a big deal with staying away from gluten. Second opinion sounds like a good idea, the first place didn't seem to care about the impact it's having and had a bit of a revolving door feel to it.

What's a flex/extend MRI? Would that pick up turning problems or just back and forward? I used to get spinning if I turned my head too quick (now I get vertigo with things like laying down or sometimes a loud noise will trigger it). I passed out once when I was driving, all I did was look over my shoulder to change lanes, I remember just before I hit the car in front of me everything froze up, no pain I just couldn't move. I always thought I'd had a micro sleep but thinking about it now it was daytime in peak hour traffic, hardly a soothing environment, it does seem odd, I can't confidently account for what happened. It put the wind up me though, I still have a license but I haven't really driven since.

[Bonnette]

The most recent flare does sound like MS, and your eye problems could also fit the picture...it will take an experienced diagnostician to put the puzzle pieces together, though. The fact that you've had a battery of negative blood tests, etc. might well point to MS by exclusion, but it's impossible for anyone but your doctors to say.

Osteophytes are bone spurs, which are typically seen with arthritis. I am not a doctor by any means, but as spurring has been explained to me, it signifies arthritic changes of the bone surface (osteoarthritis).

EVP is a painless test in which electrodes are affixed to the scalp, and visual signals are sent to the brain; the speed of the signal along the neuron is measured electronically. Demyelinated nerves are slower to conduct signals. There are several types of evoked potential examinations, but visual potentials are most commonly used to support a diagnosis of MS.

You're in a difficult spot and I can only say what I think I might do in your shoes, which would be to gather the medical records and go see a good neurologist for a second opinion. It seems to me that you have enough of a history to provide a specialist with a firm basis for diagnosis.

[marycsm77]

Bonnette,

Do you think that webiste about ms, on medhelp i think it is would be good for "Uplate", im sure you know what i'm talking about. They focus strictly on MS and she might learn alot, questions to ask, etc. what do you think?

[UpLate]

Would EVP measure sensory changes? I've had a profound alteration in sensation. For the first few weeks I couldn't taste or tell temprature, I hurt myself a few times before I'd figured out the pleasant warm sensation was actually my skin burning. Now it's the opposite, even things like my clothes rubbing feels painful, I'm still having a bit of trouble telling if it's pain or cold or too tight or if I've not put something on properly or even if I'm just overtired which I get after just a few hours being up and about. It makes it really hard to explain to the dr what pain I'm having and where it's coming from. It makes me feel really dense that I can't just get it straight away like I should and drs don't have the patience to sit with me while I try and work out the best way to explain so it's actually going to be of some use diagnositicly. Saying "like being ground into a pulp type pain" is not telling the dr anything he can use, I wind up with a similie when I think what they want is something more like a verb and I can't find one, takes forever to get my sentences out as it is, 1/2 the time I'm reaching for simple words like shop and losing my train of thought. I seem to do better at writing it down because at least I can take my time.

Also I don't know if it has anything to do with anything but found drinking alcohol has become really unpleasant, it makes the symptoms twice as bad pretty much straight away and the effect lingers for a few days after, even one drink, I can't tolerate it at all anymore.

[Bonnette]

This is the website I use the most: MS help, and a close second is here.

There is an Australian medical doctor named George Jelinek who has MS, and his website is very helpful. Some people consider his views controversial as he finds strong links between diet and MS, but irrespective of that issue there's a lot of good info on his site. UpLate, you might consider contacting Dr. Jelinek and asking for his input.

(Edited to add: the questions you are asking about your condition are much too detailed and specific to be answered by anyone but a medical team working directly with you. Absent a diagnosis, you risk scaring yourself to death with suppositions and what-if's. Please get a second opinion on your condition, and possibly even a third...find out what is wrong, and go from there.)

[MSWIFE1]

I think that's the best advice Bonnette, no need to scare your self to death or stress over all of the what ifs, I know thats easier said than done, but you need to see a neurologist for a second opinion, maybe even one who specializes in MS or TM.

[UpLate]

Thanks, I bookmarked the the links. I've pretty much been left to my own devices to try to make sense of it and yeah you're right, speculating isn't something that's getting me anywhere. It hasn't helped there's no plan, it's not like my dr has said to me ok we're going to do this, then onto that, or even told me what the process is. I'm still reeling from go for this test, see this specialist, I think it might be this and next week about face and it might be something else, I've got no idea where this is taking me.

I might ask a friend who works in healthcare if she can recomend a doctor and maybe if she can come with me for support, I always come away from appointments feeling deflated.

[Bonnette]

I might ask a friend who works in healthcare if she can recomend a doctor and maybe if she can come with me for support, I always come away from appointments feeling deflated.

This sounds like a good plan to me. It always helps to have two sets of ears at an appointment.

Your doctors need to communicate and confer with each other, and of course with you...specialists do no one any good unless their findings can be incorporated into a unified treatment plan, so keep insisting that you need to know what's wrong, and what to do about it.

[Katilea]

I hope you get a diagnosis, I was treated for MS at first and it wasn't that, by time they worked it out I was already in wheelchair. So I'm afraid I have very little trust in doctors and health professionals.

Most of what I've achieved I have done through my own research and intensive physio routine.

[Bonnette]

Hi Katilea. Misdiagnosis of MS is so frequent and there are so many conditions that mimic it...if it's something you wouldn't mind sharing, I'd be really interested in knowing what the condition was that was missed for so long, and how you were finally diagnosed.

[Katilea]

Hi

The thing is I was born with my thyroid not working which has caused a variety of problems in the past, I had read it could cause Ataxia and asked the Neuro in a letter, his reply was that it was possible but cos it was so rare it was unlikely!

They continued to watch to see how my symptoms developed for 2 years, eventually I got a full bloods panel which showed my T3 was dangerously low and TSH (thyroid Stimulating Hormone in brain) was sky high as it was trying to get my thyroid to produce more but my thyroid has never worked from birth! I have been on thyroxine since 23 months old.

I did full story on my blog once:
http://katilea.wordpress.com/2010/07...e-next-corner/

Years later when I was been assessed for a communication aid the assessor had to get medical info from my Neuro on it said Cerebellar Ataxia caused by Chronic Hypothyroidism! I was never told I was right and only found this information out by accident! (when the guy sent me a copy of report he was submitting to panel for funding for the Lightwriter).

I was also told Ataxia was just a symptom years back and meant I be abit wobbly on my feet but when they got the thyroid levels right I would return to 'normal'!

Been in chair full time 5 years now and the Ataxia now also affects Fine motor co-ordination (intention tremor) , jerky arm movements and involuntary movements of arms and legs and severe difficulties with speech. Along with balancing difficulties affecting both standing and sitting to some degree. (kind of like acquiring a mild Athetoid CP at a later age instead of been born with it!).

I did wonder about dystonia but was told Ataxia can cause jerky movements instead of a constant tremor, and after seeing people on You Tube with dystonia I don't have that severe distortions of muscles getting locked in one position.

Its more like.. say when go to put hand on computer joystick instead of just been able to get it first time my arm seems to extend fully (even though its nearer to me than that) and go out to the left a bit before I can get it to come back in and grab the top of the joystick (T-bar handle on Joystick plus) all time arm is constantly twitching left to right in little movements (the intention tremor).

I can control it better if forearms are fully supported so can still type on a keyboard with a keyguard so can rest arms on top and just poke little finger or thumb through the holes. For some tasks I use weighted wristbands and they have helped for stuff like pointing at screen on Wii playing tennis etc on it for physio. I'm better with handhelds though as can have cushions under my arms - if screen not too tiny. (I can manage iPad quite well)

It does get frustrating though as even the simplest things takes twice as long to do, especially in situations where not possible to have forearms supported all time (like trying to get dressed).

Kati