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

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?

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.

Hi

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

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,

CG

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).

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!

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!