cant walk no diagnosis

Hi,
    I am a 45 year old lady who began falling from time to time five years ago. It began with infrequent falls maybe once a month with my knee just buckling. I have asthma so I thought since my breathing was always worse at the time it was somehow related to asthma. The falling increased dramatically until I was falling from two to twenty times everyday a lot of the time I would just lose balance and my asthma was not usually worse at the times. I was sent for an mri and it came back that I had leasons consistant with ms. Three days later I started having spasms in my back that would make me flail and stiffen. I had constant pain and weakness in my legs and right shoulder,arm,and hand. I was hospitalized in a va hospital for eight days and told I couldn't have any treatment of any kind because I had no dx. By this time I couldn't walk at all. After a month I was sent to a neurologist who said I do not have ms because my spinal came back normal. He did put me on keppra thank God (The spasms were intolorable) . He plans to run a bunch more genetic tests. I just want a diagnosis
      Thanks for "hearing me out"

[Udkas]

Hi and Welcome to the MS Forum,
I am sure some others might chime in and reply here soon, but the forum is a bit quiet at the moment as many people are away at this time of year or very busy.

I feel for you and your situation, frequent falls and loss of balance is not a good thing to have and it sounds like you have not received the best of doctors or medical care.

You CAN NOT RULE OUT MS with just a spinal MRI.  An MS diagnosis is not easy to get and can sometimes take a while if in the early stages, as MRI does not always show up the lesions in the early stages, it can depend on strength of the MRI machine etc.  To have a workup for MS usually the neurologist would do a brain and a spinal MRI if they suspected spinal cord lesions, sometimes then a Lumbar puncture is done if an MRI has not given them any info, a full neurological examination and patient history etc. is also very important.  If you click on the icon on the top of this page there is some very good health pages that will talk about the McDonalds Criteria for diagnosing MS etc.

It is good that he is planning to run more tests, although your symptoms could fit MS they also could be symptoms of many other things, so it is good to have a complete work up.  It would be wrong for anyone here to suggest it sounds like MS etc. without knowing how your symptoms started, how long they last if there is clear attacks etc... Keep getting tested, if you feel you are getting worse, push for a brain MRI and try to have an MRI on a T3 machine.

It is frustrating to not have a diagnosis, ask about the lesion that they found on your MRI, what do they think it is?? If it is not MS what is it. They really should do your brain if they have found a lesion on your spinal cord, lesions in your brain can be from other things, like migraines etc. but lesions in your spinal cord to my knowledge are usually either from MS or Transverse Myelitis etc. but I am not a DR, but I would ask.

I hope this has helped and not confused you.  Again I urge you to read the health pages they would answer most of your questions.
Cheers,
Udkas.

[sg40]

I switched neurologists when I was told that I needed genetic testing. He wanted to test me for something of which there was no history in my family. I don't know what he's testing you for or if those things run in your family - but genetic testing can be VERY expensive, you may want to get a second opinion.Especially since that doc ruled out MS because of your LP results - as Udkas said you can not rule MS out based on that one test and a competent neurologist would know that.
Glad to hear you have at least received treatment for your pain.

[Audrey_M]

I agree with Udkas' suggestion to find out more about the lesions that they found. You want to know if they are in the brain and if so, how many, where, what size and why they might be considered characteristic of MS.

Someone with more knowledge may be able to help me out here, but it would seem that with the number of falls that you are experiencing, the cerebellum appears to be affected. How did you do on your neurological exam?

You'll also want to know if you have any spinal lesions, again with details.

The other thing that you may want to consider with this neuro is to ask his degree of experience with MS and how many patients he is currently treating for the disease. If he does not have many, you may want to consider someone who has more experience with the disease.

Please be careful and use as many precautions as possible to minimize the likelihood of injury with falls.

Take care and good luck.

[HVAC]

Probably where you are does not have a strong MS Society. Our local chapter is good at advocating for Veterans unfortunately the VA has a bad track record when it comes to giving people a Diagnosis of MS. You might contact the National MS Society and see if they have any help for Veterans in your area, but that may be of little help. I am sorry you have to deal with such bureaucracy. We have other members dealing with the VA who are not getting diagnosed in a timely fashion and it is horrible.

I am guessing when you say Spinal you mean Spinal Tap not Spinal MRI? I am not a Veteran but had to have a positive Spinal Tap before I could be diagnosed with MS and I saw many MS Specialists.

I am sorry you have to go through so much.

Alex

[cainer]

hope you are better!  man makes me wonder if they are after money-----
well,  get a specialist in this area i would want some answers.but maybe just ruleing out other things.   hugs  tick

[bridgeport]

Thanks for writing ,
    I did have both a brain and spinal MRI. The brain showed leasons the spinal did not. I have asked numerous times about the leasons in my brain but don't get any answers. I have never had migrane (migraine) headaches.
     I  really just want a diagnosis. I don't pretend to know what is wrong with me. I am just wondering how they can just rule MS out. What is the criteria for ruling it out?
    The doctor I am seeing keeps mentioning huningtons and plans to test for it soon. I have no family history of any neurologic disease. I am at lest confident the doctor is not out for money as I am a veteren so there is no out of pocket cost for me.
    Thank you all for your responses. I feel less alone.
bridgeport

[RedFlame]

I'm sorry for all that you are going through with this.  It's just horrible that most of us have to wait for so long.  We are here for each other and I'm glad that you found us-----welcome.

As far as how MS is ruled out I don't know but it's a good question.  Hopefully someone will comment that is more knowledgable than I.  

Red