Could this be CIDP? GBS? Help!

    • Anonymous
      January 26, 2008 at 12:41 pm

      First of all, I’ll preface this by saying that my heart goes out to everyone on this board. When I compare my story to others, mine seems like a cakewalk. But I’m really confused as to what’s going on. I’m 32 & a newly diagnosed diabetic (July 2007), but am in good shape, am slim, & work out daily. I’m on Metformin. I work part-time and we have two toddlers.

      My symptoms started August 23. My toes/feet had been a little numb for years, which I now realize was likely a result of insulin resistance, but no burning/pain. On 8/23, the numbness spread to my legs; on 8/24 up my trunk & to my shoulders, then by 8/25 went down my arms & up my neck. Numbness was just on the outer layer of skin, but definitely present. Definite weakness in legs, up to knee. Went to my doctor, who ran several blood tests (kidney function, thyroid, vitamin B, etc.) and all were normal. Went to another doctor & a neurologist, who immediately suspected Guillain Barre’ and ordered an MRI of the brain and cervical spine. Both normal. Nerve conduction studies revealed “early sensory neuropathy” in toes but everything else normal.

      Followed up with yet another neurologist & he performed another nerve conduction study, at my request, in December ’07. Sensory neuropathy had worsened considerably in feet, legs & hands, so did a lumbar puncture. It was normal, no protein. Now I’m scheduled for IVIG in a week.

      My worst fear is that this could be caused by diabetes, but all 6 doctors I’ve been to have said that is very uncommon, especially for well-controlled diabetes. The numbness definitely does seem to go through periods of worsening, about once/month now. And when it worsens, I feel increased weakness in legs.But other than my symptoms, there are no physiological signs that point towards CIPD or Guillain Barre’. Both of these things seem much more extreme than what I have, but some of my symptoms seem to mimic them. Again, I feel really fortunate that I can still walk around & am not bed-bound, but this has been going on for 6 months now & has really taken its toll emotionally/mentally. I’m just confused… I will try the IVIG, but it seems to come with its own set of risks.

      I’m really sorry this is so long! But if anyone has any ideas or thoughts to share, I’d love to hear them. I just wish I had a concrete diagnosis instead of a guess, which I know is all my neurologist can give me right now.

    • Anonymous
      January 26, 2008 at 3:35 pm

      [COLOR=black]Hello Kristen,[/COLOR]

      [COLOR=black]Sorry that you needed to be here, but welcome. One good thing is that you probably can rule out GBS right away. By definition, GBS reaches its worst point about 4 weeks from the first presentation of symptoms. Sure there must be some wiggle room on that, because some people get examined earlier in the disease course than others, but yours has been going on for long enough that GBS is [I]really[/I] unlikely.[/COLOR]

      [COLOR=black]That means it could be CIDP, diabetic neuropathy, or any number of other neuropathies. If you have had tingling for years, I suspect you were diabetic for a time (months to years) before you first noticed the tingling. You might want to discuss with your endocrinologist various severe diabetes symptoms and see if you displayed any of them from the time you first might have become diabetic. If you did, then your diabetes was probably severe and nerve damage could have been a result. If not, then your doctors are most likely right and what you have is not the typical diabetic neuropathy. [/COLOR]

      [COLOR=black]Unfortunately, it is much harder to diagnose CIDP in diabetics. Somewhere between 10% and 20% of confirmed diabetics meet the electrophysiological (NCV) criteria for CIDP. That does not mean they have CIDP, just that they meet one of the criteria. But type 2 diabetes predisposes you to develop CIDP, with about 11 times the risk of the average population. So, while you more likely to have CIDP than a non-diabetic, diagnosing it is harder. I wish I could say that does not leave you in a bad spot, but sadly it does.[/COLOR]

      [COLOR=black]If your can accept the risks, try the IVIg. To help reduce your risks, you, as a diabetic, should stay away from IVIg that contains sugars. If the IVIg helps, great. At least you will be getting a treatment for whatever is going on. If not, well, a diagnosis of CIDP becomes less likely (although still not eliminated) and your doctors can start to focus on something else.[/COLOR]

      [COLOR=black]Godspeed in your search for a diagnosis.[/COLOR]

    • Anonymous
      January 26, 2008 at 6:44 pm

      Hi Kristen.
      I came down with GBS last Nov from a flu shot. I am diabetc 2 and had IVIG with no problems. as mention double check and make sure the IVIG is sugar free.From what I have read the IVIG is not as bad as some make it sound. My nuerologist said I was very blessed that my GBS moved very very slowley. It was almost 6 weeks before I saw a doctor. I did stop walking but was back walking in 4 months. Please do not over look anything and get the answers you need from the doctors. Some doctors pretend to know the answers and you can figure them out fast and get rid of them. One think that works for me is I keep my faith and think postive. You are in my prayers (Steve)PS My GBS was from my knees down.