Question about autoimmune neuropathies

hi damian & welcome,

all neuropathies that have an autoimmune component are either Guillain Barré Syndrome, if they have an acute onset, or CIDP, if they are chronic.
NOT SO. eg. rheumatoid arthritis and lupus are 2 examples of other auto immune neuropathies.

1. Are all chronic autoimmune neuropathies CIDP? My daughter has not presented any damage in her motor nerves, despite she did not receive any treatment for a year after onset. NO, see above. you can have gbs with only the sensory nerves. try neurontin.

2. Once the immune system is altered, can it be permanently regulated? I am concerned about this, due to my daughter age (she is only 13)
THE IMMUNE SYSTEM STOPS PRODUCING THE BAD ANTIBODIES OF ITS OWN VOLITION IF IT IS GOING TO DO SO. it is not altered, it is misled.

3. As far as I understand, the sensations she describes are due to nerve damage, so are we going to have to wait for the nerves to heal in order to see any changes in sensation? YES.

4. I have reading some other threads here, in some it is mentioned IVIG is not helpfull in pure sensory neuropathies, is this true?
IVIG WORKS ABT 70% OF THE TIME. the ivig does not heal & make her sensations go away. time does that measured in months & years.

5. How long will it take for her nerves to heal? NO ONE KNOWS.

6. What exactly is this antiganglioside thing? Can it be controlled?
THEY ARE antibodies against nerve gangliosides. assuming she does have gbs, it is the problem. the ivig trys to neutralize them.

7. How do we know IVIG had an effect on her if she still has some sensations?
SINCE SHE went a year before getiing ivig, it did no good unless she has cidp which, to me, it does not like she has. if she has cidp, over time [perhpas 6 to 8 weeks], she will degrade & would have done so this previous year. now here is the tough part. if she over works herself, her residuals will act up & it will feel like a gbs attack. a ncv can tell which is going on. this is what i think is going on w her. we have residuals & we need plenty of rest both to make the nerves heal & keep our residuals from acting up. repeat – plenty of rest.

8. Should we see another neuro to get a better diagnosis? (he is one of the best here)
DO SO if you wish. as long as she makes slo improvement, all is normal & you must give it time. perhaps she will have these residuals for life.

take care. be well.
gene gbs 8-99
in numbers there is strength

I think Gene gave you good answers in his response. I just wanted to add a few things.

My daughter is 5, dx’d with CIDP at 4 and is on IVIG more frequently than most because she has a unique case. So I know what you are going through. It will get better and it will get easier. Trust me on that.

I’ve read that children have sensory symptoms more often than they have motor systems. So it’s not really surprising that she just has pain.

The pains have been described to me, by other members, has burning & tingly feelings…kind of like when your leg falls asleep but more intense. She will probably continue to have those pains for quite some time. The attack on her nerves has probably been stopped (if it is GBS) and now they need to regenerate. That takes time.

She may never be exactly the same as she was before. She might occassionally have some pains here & there or she might not. That’s the thing with these disease, no one really knows what is going to happen to everyone who gets it.

As Gene said, she needs rest. A lot of rest. It’s important for her to not over due it. That’s hard to kids but you need to set up some boundaries for her. Explain to her that her body needs the rest in order for her to get back to her normal self again. She’ll have more setbacks if she pushes herself too hard.

You need her dr to give you a specific diagnosis. You need a name for her disease. Getting a 2nd opinion is never a bad thing. It just sounds like you need your dr to give you some answers. If you don’t get them then go see another one.

Good luck.
Kelly

Damien,
I would print out the questions you posted, show them to the current neurologist and if you are not satisfied with the responses get a second opinion. You may want to get a second opinion regardless of the responses. It never hurts. How great it is that you are learning all you can for your daughter. Keep asking all the questions you have and good luck. Keep us posted.
Linda

Hi Damien,

Immune mediated neuropathies are very hard to diagnose becuase of the lack of general clinical consensus in the medical community making it that much harder for the patient to avail of the best possible care. I wish your daughter the very best in getting the care she needs and deserves. There is a website called neuropathy dot org and has a section on immune mediated neuropathies diagnostics and the treatment. This was the best information I was able to find.

the exact link to the articles is :

[url]http://www.neuropathy.org/site/PageServer?pagename=Type_Immune[/url]

once again best wishes,

Gopal

Hello Damien,

From everything I’ve come to understand, Gene hit it right on the head. One thing every doctor I see asks is, “do you have diabetes?”. Diabetic neuropathy seems to be better understood than what we all have. I’ve had several rounds of IVig (I have CIDP) starting back in April of this year and I’m still waiting on it to work. I may well be one of the 30% it doesn’t work on? As Gene also pointed out, getting the IVig as soon as possible seems best. Due to insurance problems and follow up appointments between four Dr’s. I ended waiting over eight months to start the IVig treatments. Rest, rest and more rest (thanx again Gene) is the best thing for her right now. I sure wish you folks the best, all of the members at this forum are quite knowledgeable and don’t mind sharing. Let us know what you find out…Dughy