Question about MRI results

    • Anonymous
      April 21, 2010 at 1:51 am

      Hello…Just a quick question about MRI results. I am in the process of getting a diagnosis (if you want the entire story read the help getting a diagnosis thread)…I FINALLY have a Dr (silly enough its my new pain management doc) that is at least calling what is going on with me some form of Demyelinating Polyneuropathy…but my new nuero(about the 6th one thanks to the army’s fabulous system) is not on board…she actually dismissed the results of the pain clinics EMG as my being cold!! The EMG was preformed on my arms and legs on 2 different days…I guess I was cold both times and 3 years ago when my first EMG showed damage…anyway she ordered a new MRI stating that if what is going on with me is CIDP my MRI should show changes….from what I have read MRI’s are not at all an instrumental test in diagnosing CIDP…anyone care to enlighten me?? Thanks for the help. Melissa

    • Anonymous
      April 21, 2010 at 7:24 am

      You do not say if the MRI is of the brain or spine or other place. You are right in that the MRI is not expected to show changes with CIDP. An MRI is almost always done to “rule out” another disease like MS or a something in the brain that might be confused with the symptoms of CIDP and that would need another treatment approach.
      CIDP is rare. You really should see a doctor that specializes in the peripheral nervous system. This being said, a lot of specialist in the peripheral nervous system argue about what changes on EMG are important in people–how to do the tests (number of places, etc) and what levels of changes are important.
      CIDP is a problem with the peripheral nervous system. An MRI of the brain or spine looks at the CENTRAL nervous system.
      WithHope for a cure of these diseases

    • Anonymous
      April 21, 2010 at 8:34 am

      WitHope…I understand all of what you posted..we have been dealing with CIDP in my family for many years, my sister has it. I am following her progression exactly..even the misdiagnosis! I just need to be sure I have ALL my facts straight when I go back to my new nuero. My MRI was of the brain and she is the one that stated there should be changes if what I have is CIDP…from everything I have read that is not the case……is that correct??? I ran all of this by my sister and she had the same opinion I did…the MRI of the brain is not an indicator of CIDP…she is at MAYO today and is going to see if Dr Dyke will look at my test results. I can only hope……

    • Anonymous
      April 21, 2010 at 8:48 am

      sorry you have to deal with the military when it comes to getting a dx for this disease. you should really try to get champused out so you can go to a real neuro who knows what they are talking about.

      My son see’s a neuro who is on the board to this forum and is out of Wayne State Univeristy in MI. He does do consults with other neuro’s he can either talk to your neuro to enlighten him or her on how to dx and treat CIDP. Or he will give you a name of a neuro he knows in your area who knows something about CIDP.

      Let me know if you want Dr Richard Lewis’s number. Oh just an FYI Dr Lewis helped name a variant of CIDP (Lewis-Sumner variant) he is an expert in CIDP


    • Anonymous
      April 21, 2010 at 11:56 am

      As a former military member, I sympathize with your situation. As someone who is also seeking a diagnosis, I REALLY empathize with your situation.

      I, too, see a Pain Management doc. I wouldn’t really trust him to diagnose CIDP, though. Perhaps he could, I don’t know; the doctor that runs the clinic is a neurosurgeon, and they do EMG’s and such all the time.

      I would suggest gently challenging your neurologist about the EMG’s. If they do not think the tests were performed properly, then they should be willing to perform the tests themselves. When I had mine done, the doctor measured the skin temperature several times during the procedure, and recorded it right on the results form. Could you check you results to see if your original EMG doc did the same? Interesting sidenote: the last neuro I saw said the same thing, trying to discount the results from the first, but when she ran her OWN EMG’s, she didn’t measure my skin temp, other than putting her hand on my leg, to “see if it was cold”. Very scientific, eh? :rolleyes:

      The MRI’s, I would bet, are to rule out MS, especially if they’re of the brain. MRI’s of both the brain and the spine can detect MS, as there will be plaque lesions on the brain, or suspended in the spinal fluid. They would also, I assume, want to rule out any brain tumors, lesions, etc., that could be causing similiar symptoms, or if it’s of the spine, disc problems, etc.

      If you’re not sure…ASK!! Also, you are entitled to your own copies of all films, reports, etc.; I’d start gathering them. While some doctors won’t take the time to look at them, if you gather them as you’re having them done, you won’t have to backtrack later, and, being military, if you move, you always have your records accessible.

      Just some thoughts…good luck!


    • Anonymous
      April 21, 2010 at 7:56 pm

      Thanks for all the good input!

      I know my pain management Dr. is not the best person to diagnose this, he knows it as well. He told me that even if he did diagnose CIDP I would still need a neuro Dr. to agree…..all of that makes perfect sense. Where the problem lies is that no except my pain Dr. will even acknowledge that there is something going on….my new neuro(who I have no confidence in) has dismissed my EMG results as I was cold.Both times last month because they did arms and legs on different days and 3 years ago when they dx me w/bilateral carpel tunnel and a compressed ulnar nerve(none of which is the case):confused: ……what do I do, what do I say, who do I go to………and remember I have to do all of this using the military health care system!!!!!

    • Anonymous
      April 21, 2010 at 8:30 pm

      family affair, I would echo with hope’s response. MRI’s of the brain and spine are not used to dx CIDP. CIDP lesions are in the peripheral nervous system and are indicated by a nerve conductivity test, EMG and other diagnostic tests.

      I note that your sister has CIDP as well. Is it possible that she has CMT and not CIDP? They present very similarly, but CMT is a genetic disease and could therefore afflict other members of the same family. CIDP is very rare and has no genetic component (that they know of). It is an autoimmune disease, treated with IVig, prednisone and other immunosuppresants. I would find out what treatment your sister is getting. If the drugs mentioned above are being used and they are helping then it would point to CIDP. I am not aware that IVig and the other treatments I mentioned would be used with CMT. I would check this out very carefully.

      Good luck getting to the bottom of this! Good luck.


    • Anonymous
      April 22, 2010 at 1:25 am

      Sharon, According to the Dr’s autoimmune issue are not hereditary but you (or a group such as a family) can be predisposed to them. If they ever need proof of this they can look at my family. Of 7 women only 1 shows no signs of any autoimmune problems. We have 2 with lupus, 2 with Sjogren’s, 2 with Reynaulds, 1 with CIDP, and me as of now undiagnosed…I know those numbers do not add up- 2 of them have more than one issue. My sister was diagnosed by Dr Dyke at Mayo and she has been on IVIG now for about 4 years and is finally starting to show some slight improvement(tiny bit of reflexes have returned and very slight improvement in strength). She was told that she had the largest, most scarred nerves they had ever seen, not the kind of notoriety one would want! They also told her that she is one of the toughest cases they have as it progresses so slowly that the diseases has the time to thoroughly destroy the nerves so the only real hope for her is to stop the progression and not to expect to regain much if any of what she has lost. As a matter of fact she just saw him today and showed him my current EMG, he agreed to see me if I can get the referral from the army to Mayo. Thank god my family is all in Minnesota so if i can get the Army to sign off I will actually be able to go there as I will have a place to stay. I am following her course of progression exactly even down to the misdiagnosis. It is so frustrating being 90% sure that this can be stopped but I cant get anyone to listen so in the mean time I watch my energy level and strength decrease, i have random numb spots showing up and all I can do is hope that I have a good day tomorrow and that the spots will not stay numb forever!

      I am grateful for anyone that takes the time to read my posts and respond as at this point any and all suggestions to help me get someone other than my pain management guy to listen are very welcome. I am really not trying to complain about my situation as I know there are many in much,much worse shape….I am very thankful that if what I have going on is CIDP that it progresses so slowly…at least it gives me time to attempt to get the correct diagnosis the first time(LOL)!!!

    • April 22, 2010 at 8:58 am

      Hi family affair,
      Prayers sent your way that the army expeditiously gets you that referal so you too can get the treatment you need.

    • Anonymous
      May 17, 2010 at 11:33 pm

      Specialized MRI’s of major limbs were used in my case to identify the nerve bundle which would be the most likely candidate for biopsy. However, it’s unlikely these are what your neuro is talking about. Or, are they? MRIs also showed the degree of atrophy in various muscle groups.

      On the other hand, full spine MRI’s were used to rule out other things. As mentioned by others, my MRIs were not used to rule in or out CIDP.

      I certainly am not qualified to discuss in detail how the MRIs were special. Do what you have to do to get a referral to a major teaching facility such as Mayo. Or, find an army specialist who will work with you.

      After you’ve gone out of state for diagnosis and treatment recommendations you still need somebody in your state, hometown preferably, who will be ‘in charge’ of your case.

      The foundation has a list of medical facilities. I got a list in the mail today.

      Prior to diagnosis I had, and I lost count how many, many emg/nvc tests. find a neuromuscular specialist.