Hello, I'm new here and looking for a little help

    • Anonymous
      March 3, 2013 at 12:19 am

      Hello everyone, this is my first time posting.  I was recently diagnosed by 2 neurologists with a CIDP/autoimmune neuropathy “variant”.  I don’t have classic test results that are associated with CIDP, but I have many signs that point to it.  I’ve have very slowly progressive symptoms, some are waxing and waning.  I guess I have some questions for some more experienced people.

      This is a quick list of symptoms:

      Neurological: Slight weakness in both shoulder blades, left hand atrophy and weakness, atrophy and weakness in both feet, fatigue in shoulders and legs, plus generalized fatigue, slightly slurred speech at times, double vision, fasciculations all over the place, paresthesias in all four limbs, brain fog.

      Musculoskeletal: Joint pain in both hips, low back, TMJ, myofascial pain all over.

      GI: IBS for months which has calmed down, severe GERD.

      Skin: tons of canker sores at times, random cuts occasionally appear on my hands and face.

      Here are a few of my pertinent tests:

      WBC count is 3.0, low platelets and neutrophils, CD4 count low, CD3 high, food allergy test positive for about 25 foods, spikes in TSH, positive ANA screen, interleukin 6 and 2 elevated.

      I had a SPECT scan of the brain showing severely decreased cortical perfusion in a diffuse non-specific pattern.  MRI normal.  My spinal tap showed elevated protein (61) and macrophages.  EMG’s are normal except for signs of chronic denervation in my left first dorsal interosseous and a few fascics in my foot.  NCV showed some prolonged distal latencies in the ulnar nerve on both sides.

      Does this all seem consistent with CIDP and autoimmune neuropathy in your experience? I am afraid of MND, but I have had symptoms since 2006, the EMGs don’t support it at all, and there seems to be other labs that support something else.  My neuro said its a very slow moving, relapse/remitting form of CIDP.  We are probably going to start ivig soon.  I don’t really know what I should be concerned with, what questions to ask etc.  Any and all input would be appreciated.

      Thanks so much,



    • GH
      March 3, 2013 at 2:39 am

      I’m no expert in interpreting your test results — leave that to your neurologists. But it seems that they are doing all of the usual tests. The elevated protein in the spinal fluid is a key indicator for GBS and CIDP. CIDP is noted for exhibiting a great deal of variation — more like a class of disorders than a single thing, so it’s not unusual to be “atypical,” if that makes any sense.

      It seems that you have already been asking a lot of good questions, because you have much more detail on your test results than I ever cared about. The main questions I think you should still be asking are: What are the other pissibilities? How can other possible causes be ruled out? What are the various treatments and associated risk factors? In short, the same types of questions one should ask about any serious illness.

      Have you not had any treatments until recently?

    • Anonymous
      March 3, 2013 at 6:37 am

      I’ve been a little bit of a medical mystery for a while, which I think is why I’ve been given the “atypical” moniker.  But yes, I’ve had innumerous tests over the last year or so, because as more and more weird symptoms started popping up I began to worry more.  It’s hard to determine which results are meaningful and fit into a diagnosis.  I guess I’m mainly curious if people who have things in the CIDP spectrum have all these other wacky things or if they only have the hallmark results.  I’ve had a rheumatologist and 2 neurologists essentially say it’s “something” autoimmune and ivig will help.  I went through a Lyme disease course of treatment without any help.  We’re basically waiting on insurance, etc. before rolling with the ivig.

      Are there dietary adjustments? Supplements? Leaky gut? Anything to do more or less of? I need to research this stuff but I figure people here would know more.  Any resources you can suggest?

      Lastly, do my symptoms seem consistent with CIDP as you understand it?

    • GH
      March 3, 2013 at 11:52 pm

      Not “tests,” “treatments.” Will your soon-to-start IvIg be your first treatment for CIDP? When was it diagnosed?

      Some of your symptoms are consistent with CIDP, but your neurologist must evaluate all of your symptoms and consider all the pissibilities. The spinal fluid test is an important indicator. Weakness from demyelination is typically bilaterally symmetric, and progressive from the lower extremities upward, but there can be variation from the typical pattern. Even if you do have CIDP, you can have symptoms which are unrelated to it. Only your doctors can sort it out.

      My case of CIDP is considerably different, in being relatively acute (and severe) in presentation, and then going into remission and allowing recovery. I have had no signs of relapse two years out.

      Standard treatments for CIDP are IvIg, steroids and other drugs, and plasma exchange. I have had all of these, and currently am treated only with an immunosuppresant drug, mycophenolate mofetil. I also take two supplements on my own (actually my daughter’s) initiative: alpha-lipoic acid and vitanib B12. The ALA is an antioxidant, and B12 is supposed to enhance nerve healing. My use of them is entirely speculative. I make no claims that they have made a difference, as it is impossible to determine.

      Because your diagnosis is a slowly progressi e relapsing/remitting form, my experience does not really fit your case, and my treatments would not necessarily apply. Every case is different. IvIg did not do much for me, for example, and I discontinued its use early. For others, it is the key treatment.

    • Anonymous
      March 8, 2013 at 6:37 am


      I used to post a few years ago and came back to see if any of my exp can help.


      You seem to have had all the relevant testing and seem on the right track – tho I am not a specialist – just self taught over time. It took me ten years  to get the correct diagnosis of CIDP and that was due to an acute exacerbation over six weeks when I went from a little weak to barely walking. It is true that the symptoms are usually symmetrical and ascending – for me they appeared to be descending and my spinal tap was inconclusive. My  diagnosis was confirmed by a sural nerve biopsy. I did steroids. IVIG, pheresis  and other immunosupressants over ten years and appear to be in remission for the last two.

      Hang in there and good luck with the IVIG

    • Anonymous
      March 8, 2013 at 8:52 pm

      I have only been treated with antibiotics because of the initial diagnosis of Lyme.  The CIDP diagnosis has come in the last couple of weeks by 2 neurologists, although they are leaning towards “something autoimmune” as my presentation is not classic anything at this point.  The weakness and atrophy in my feet are symmetrical at this point, but the right foot started first and was followed shortly thereafter by the left.  My right shoulder blade started years ago, but then the left kicked in last year.  The speech issues started last year as well.

      Its amazing the variability of signs and symptoms in this rheumo/neuro realm of medicine.  I’ve heard so many people say it took years to get a dx and find treatment that helped.  I appear to be in that boat as well.  I’m waiting for my neurologist to get back to me so we can start IVIG and see what happens.  The supplement realm is very murky indeed, but I seem to hear over and over that plant sterols, omega-3 fats, and antioxidants help autoimmune disease.  But as you say, there is no established cause and effect relationship empirically.

      I’m just curious if other people have these other weird things come up in bloodwork.  This is why mixed connective tissue disease is also on the table for me (as I’m negative for lupus) because the neurological issues are only part of the problem.  But they are certainly the most disconcerting.  I know that autoimmune disease often come in packages, and I have a little bit of family history .

      Thanks so much for your input.

    • Anonymous
      March 11, 2013 at 12:30 am

      Hi Steve,

      Has Vasculitis been discussed as a possible diagnosis by any of your doctors?

      I am a GBS survivor who is looking at a probable dx of one of the 16 forms of Vasculitis now…………the symptoms can be “all over the place” and can include muscle weakness, paresthesia, headaches, rashes or sores that won’t heal (including mouth sores), etc.  It can affect the CNS and/or the PNS.  There is a very long list of symptoms, which makes dx difficult as they can seem unrelated.

      It also can come in “flares” (or relaxing and remitting) and can be brought about by many conditions including allergies. (Like mine.)

      Is your C-Reactive Protein high? Have you had ESR done? I am fortunate that my ANA is still negative (it was sky-high a year and a half prior to my developing GBS) but when I am having a flare of whatever this is I have going on now my CRP is at least 3X the high normal rate. Unfortunately CRP can’t pinpoint where the inflammation is and what is causing it…….

      I currently have confirmation of four autoimmune diseases, if I have Vasculitis as well, this will push me to five and counting…….

      I hope you get a correct diagnosis soon, as I told my GP, I don’t even care at this point if anything can be done for whatever is going on, I just need to put a name to it………………

      Best Wishes,




    • March 15, 2013 at 3:02 am

      Steve – you sound very much like myself – symptoms x aobut 4 years (twitching and foot a little weak, but never thought much of it) and then after having my son 2 years ago and having a medical procedure go bad I went downhill FAST!! I had GI issues as well – they didn’t call it IBS as I lost so much weight with it and that is an exclusion criteria for IBS.. it was suspected possible crohns or something to that effect.. however interestingly I had a postive CMV titer a few weeks into my symptoms (which it was negative at the end of my pregnancies).   Anyhow.. i declined quickly – swallowing and speech were involved, as were my eyelids and just droopy face – droopy everything!   I crashed and ended up admitted and started with IVIG..   It was a miracle, as after the 2nd round I was 99%- i couldn’t stop smiling for the 2 weeks it worked until it started wearing off (I was 30 years old, but the first dr told me I might have ALS.. so I was a wreck)…..      All my emg’s were negative, except one NCV showed demylenation of my right knee (which is where my first symptoms started)..

      I was a big risk for lyme as I hiked in new england for years and had many tick bites .. it was always negative however.. I am 2 years into all of this and doing fairly well.. I have breathing difficulties at times, weakness all over , atrophy all over.. but I am doing SOOO Much better than i was 2 years ago, its a miracle!  I am hoping IVIG has the same effect for you!!!   (oh and I have never had the classic CIDP findings on testing).

    • Anonymous
      May 23, 2013 at 7:58 pm

      Sorry for the delayed response. I’m kind of in a holding pattern, as my symptoms fluctuate so much week to week that they’ve decided to hold off on the IVIG for a while. They still won’t call it CIDP or MMN specifically because of the lack of electrodiagnostic evidence and my EXCRUTIATINGLY slow progression that can barely be called progression (I’m happy for it, trust me, but it makes diagnosing harder I guess).

      CG – I don’t think there has been any testing to vasculitis specifically. I have normal ESR and CRP, but I’ve had one ANA screen come up positive and a few others normal. I have high IL-6 and IL-2. Plus the other weird stuff I mentioned above.I completely hear you about putting a name on it. I was afraid of MND (still am a little) but after my EMGs, blood work, and rate of progression rule it out, all I keep saying is “fine, its not ALS…then what the $%#@ is it?”

      bny806 – Very glad to hear IVIG worked so well for you! Do they think the medical procedure triggered some osrt of crazy immune response that IVIG calmed down? Its so weird how these GBS/CIDP/MG symptoms blend together. My neuro told me how much gray there is with these things.

      Do you guys believe at all in dietary changes? Should I try something less intense like prednisone if we don’t do IVIG now? I feel like I’m losing my mind a bit.


    • May 24, 2013 at 3:49 am

      Hi Steve, glad to hear that whatever you have is slow progressing, that’s great news! I will feel like that at times, and then I’ll have an exacerbation and it scares me!!! My neuro isn’t really trying to figure out what I have anymore, which really frustrates me.. as maybe there is a better treatment? I Havne’t breathed well in my sleep since this all started, so I have a sleep study coming up.. I used to have horrible swallowing issues, but those are thankfully better, though not normal.

      I don’t know what triggered it – many of the drs question if it was post viral? I had hand foot mouth virus (coxsachie) right before the IUD perforation fun.. with coxsachie – i had awful muscle aches – fever of 103.6, it hurt down my esophagus (all the same places I have issues with now).. but I also almost got intubated with my epidural during my c section a few weeks before that, and was paralyzed in the same distribution of my symptoms now – so who knows!!

      Prednisone really helps so many people, I only tried it once, and the dr started me on 60mg (as opposed to starting low and going up).. if felt like I was going to kill over, I did 3 days of it and coudln’t handle it anymore – I was WAAAY weaker.. I want to be the best I can be, but at times I just also feel like I settle for not getting a lot worse, as so many of the treatments have risks.. I’m not ready to risk immunosuppressants yet.. so I guess it just depends how intolerable your symptoms seem

      I hear ya with the mind — I seem to have a hard time the day after IVIG.. I get anxiety, scared etc about the whole situation.. and just not knowing.. looking at my kids and not knowing if I’ll be here for them when they are older.. Guess it’s all out of our control, but it’s still scary!

    • May 24, 2013 at 4:20 am

      I meant to say.. I have been gluten free x 2 years, as with my GI symptoms , family history of autoimmune and intestinal issues. they thought maybe I had celiac.. also it has neuro complications as well.. I was and am willing to do anything to feel and be better.. i think it may help, but who knows for sure!