If you don’t get treatment with CIDP.. what happens?
AnonymousJuly 8, 2009 at 8:57 pm
My doctors won’t treat me without a proper diagnosis, which I don’t seem to be getting.
I’ve responded to steroids (been on them for random things in the last year, but my neuropathy responded) It then flared really bad when I stopped them.
I also fit all symptoms of CIDP..
If you look under wiki I am that person that they are writing about.
weakness, numbness, difficulty walking, fatigue, GI problems, etc, etc..
But my EMG shows sensory greater than motor.
Clean spinal tap.
And I am thinking of refusing the nerve biopsy because you can’t numb a nerve and I’m through with painful tests that get me nowhere.
So.. if I get no treatment.. do I die?
Or do I just end up slowly progressing?
I mean, what happens if you have CIDP and don’t get treatment?
AnonymousJuly 8, 2009 at 9:15 pm
If I were you I would Google “sensory CIDP” and print up EVERY single article about it & take it to your dr.
If your dr won’t listen to you then you find another one. There are dr’s out there that will help you.
Do NOT give up!
Ask your dr to treat you with IVIG empirically. That means they treat you without a diagnosis & if the treatment works then they know you have an autoimmune disease (likely sensory CIDP).
If you don’t get treatment then the damage will progress. It could progress to your autonomic nervous system which controls breathing & heart rate.
Have you contacted the GBS/CIDP foundation to see if they can help you find a dr in your area who specializes in CIDP?
AnonymousJuly 9, 2009 at 8:31 am
The problem with not having a solid diagnosis is that doctors are reluctant to give the types of treatment needed for CIDP when that treatment may be counterproductive. The symptoms of CIDP are also seen in a number of other disorders, such as MS and CMT, which can also be difficult to diagnose and which don’t respond to the normal CIDP treatments. And of course, there’s the financial factor: some insurance companies won’t pay for treatment of an undiagnosed illness, particularly with the price tag associated with IVIg.
Some people with CIDP never have treatment and do fine, particularly those with the more sensory form of the disorder. In those cases, the peculiar sensations or loss of sensation is less problematic than the side effects of the treatment. And for a rare few, the disorder will burn itself out.
But the fact that you’ve improved using steroids indicates the presence of autoimmunity. Kelly’s advice is excellent: keep pushing!
July 9, 2009 at 3:14 pm
sorry no info
AnonymousJuly 9, 2009 at 4:46 pm
Thank you everyone!
I wish I could get a trial of IVIG and see if I respond and see if that would be diagnostic.
IDK what my neurologist has up her sleeves.
I called today to say that I wasn’t sure I wanted the nerve biopsy and it sounded like after my EMG that I may not need it?
I know my spinal tap results, but I still do not have the type out of the EMG.
The nurse I talked to said she(the neuro) wanted to go over everything with me on the 15th, and I may or may not need the biopsy.
But, the day of the EMG the neuro said that she wanted me to have it, and that she would call me to set it up.
And now they are saying that they want to see me in office.
So IDK what was on the EMG.
Which is why I want the dictation.
AnonymousJuly 9, 2009 at 5:32 pm
What is IDK? Also, I have been doing a lot of reading about cidp and in adults, sometimes they give trials of ivig for longer than they do a child to see of they do respond. According to the last GBS-CIDP newsletter, there is new diagnostic criteria for cidp. It involved the absence of a paraprotein, etc.. I am going to run it by our doctor. I would love to see you get a great doctor and ivig for a couple of months. Blessings
AnonymousJuly 9, 2009 at 6:53 pm
[QUOTE=selahsmom]What is IDK? According to the last GBS-CIDP newsletter, there is new diagnostic criteria for cidp. It involved the absence of a paraprotein[/QUOTE]
IDK- I don’t know.
Do you have a link to the new diagnostic criteria? I would love to do some reading on it myself.
Perhaps I could present it to my neuro and I would be able to start some IVIG.. oh that would be great.
AnonymousJuly 10, 2009 at 11:58 pm
Please, I hope you can get a diagnosis. It took me so long to get a diagnosis, and I was in such a mental mess until I had something to deal with. The hardest time is the waiting and not knowing. I totally sympathize with you.
IVIG is not a diagnostic tool. It can help too many different things. I can’t tell you what all might be going on, but.
1st they try to rule out things like heavy metals, vitamin def. diabetes, other diseases that cause neuropathy as a by product.
2nd. Once it is narrowed down to a neuropathy, then they cross out Central Nervous System things like MS, or things like ALS. Then they look for symmetry.
3rd. Demyelinating or not? EMG can give clues. I don’t know how, but the EMG can tell if it is axonal damage, or myelin damage.
4th Nerve biopsy can confirm denervation, demyelination and remyelination, or whatever things are happening.
5th the spinal fluid teat can identify a protein that shows up in CIDP.
6th, then the Dr. has to see a 6 to 8 week period of continual activity. That makes it be “C” chronic. Then they decide how acute the situation is and proceed with a treatment.
If the situation is acute and the progression rapid, they get very active very quickly. If the situation is less acute, they look for a treatment to match the symptoms. IVIG doesn’t work in all cases. I don’t respond to it.
I hope they find answers for you. Deb in England is totally right, keep pushing for a diagnosis. Whatever you have, CIDP or not, needs to be treated in some fashion. Keep pressing to find out what it is.
AnonymousJuly 11, 2009 at 5:25 pm
Link to article mentioned by selahsmom:
If you actually want the article, you can buy it from Elsevier for $31.50 or go to a medical library and copy it.
By the way, I am not sure that the absence of the paraprotein is really new. I think what is new is the more precise definition of the NCV study.
The current best practices is found at [URL/]http://www.pnsociety.com/Guidelines_CIDP.pdf[/URL]
AnonymousJuly 12, 2009 at 10:14 am
In the paper here [url]http://www.pnsociety.com/Guidelines_CIDP.pdf[/url]
anti myelin antibodies arre exclusion criteria, this is nonsense,
How do you exclude without doing the antibodies test to everybody with cidp? In my case i have the anti-GD1a very high, who is suppose to be the GBS most known anti-body mentioned in the web papers.
I think information about cidp is still caotic and leak of a serious criteria to be assesed.
(2) Exclusion criteria
Diphtheria, drug or toxin exposure likely to have caused the neuropathy
Hereditary demyelinating neuropathy, known or likely because of family history, foot deformity, mutilation of hands or feet,
retinitis pigmentosa, ichthyosis, liability to pressure palsy
Presence of sphincter disturbance
Antibodies to myelin-associated glycoprotein
AnonymousJuly 12, 2009 at 11:10 am
I always thought Anti-MAG was a seperate disorder all its own?
Because when I was at Mayo clinic they did a blood test just for that.
I didn’t quite understand that article though, in that did it meant that if you presented with the correct symptoms and had an “absolute” CIDP EMG that you could be diagnosed without the “supportive” criteria such as the nerve biopsy?
I think there was 1 line that said you could.
But you had to have that criteria.
If you had “probable” CIDP then you had to have the supportive criteria like a LP and nerve biopsy.
From my understanding.
I really hope my symptoms are fitting enough, and that my EMG shows CIDP.
I asked for the dictation but apparently being “on call” gives my doctor the pass to not type it out.
So I don’t get to know anything until Wednesday when I go back to neurology and actually sit down with her.:mad:
AnonymousJuly 12, 2009 at 12:44 pm
To know that one has anti-MAG you need to be tested fot it.
If there is no test for anti-MA, anti-GM1, etc how do one know that you
ave this or CIDP, if it that CIDP is a different disease from the anti-XX.
I had 2 EMG and NVC that diagnosed me as pheripheral neuropathy, and only
knew about the anti-GD1a when I went to an inmunologist having my ESR high.
AnonymousJuly 14, 2009 at 12:56 pm
i have received no treatment for CIDP either. I have changed neurologist because the last one doesn tdo ivig. the new one does but i had to have an mri of my head and then he went out of ttown. My next appointment is on the 21st, i hate the waiting. ythe numbness is progressin g and nw i am having trouble with my bladderr. good luck in getting treatment i hope you find someone to help you
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