[Katrina Spain]

Hello everyone. I am lucky i found this site. I read some posts i am so sorry for any person who suffer, but i gbelieve this suffering is for a reason. I am a spanish girl, i am 19 years old. I would like to ask the people with neuropathy some questions. I am desperate, very affraid, very confused, i don't know what i have. My english has many faults. Sorry for this.
I have neuropathy, my doc told me this with a electric conduction test, this is demyelinating. It is not very bad in comparasion with other people. However, i am very affraid and confused. It started six months ago i was feeling very weak and my legs had strange sensations, i started feeling my legs numb and hot, and with strange feelings. I thought this would go but one day i went dancing with my friends and i couldn't do it. i had to sit down, otherwise i would fall. I started worrying. My parents and i visited the doc, and that doctor sent us to a neurologist. After so many tests, including blood and other he told me i had a light neuropathy. He told me i get IVIG. I had the infussion two weeks ago, and i still feel almost the same. No more weakness bot the strange sensations still here, all over my legs. The doctor told me don't worry that they wil dissapear. But i believe he is only triying to be nice and to not scare me. I read people have neuropathy since 5 years ago, ten years ago, 3 years ago. i have had neuropathy for 6 months, should i think this is a life thing? Is it being realistic that it think those weird sensations will never go away or it is just dramatic? What about IVIG, will it ever work? When? I am so sad, all my friends seem so scare because i am sick, they think this is too much for a person my age. Can you tell me about your experience? Thank you.

[MelodyL]

" Is it being realistic that it think those weird sensations will never go away or it is just dramatic?

Honestly, I don't know what to make of what you wrote. A doctor would not say "light Neuropathy".

Sorry, but your post is indeed too vague.

Perhaps others will think what I'm thinking???

People????

Mel

[BEGLET]

Welcome, you've found a good group of knowledgeable people!

I'm betting you mean by light nuuropathy the doctor meant mabye "mild"? You said you had lots of tests - did they tell you what type of neruopathy you have? Since you are getting IVIG - I would assume its an "autoimmune type" - which IVIG can help - though therapy usually must continue ongoing..... check out www.lizajane.org - these are spreadsheets done by one of our members about neuropathy to help both patient and doctors rule out causes and possibly determine what is causing it... often the cause is never known.

The symtoms you describe are pretty common for neuropathy - but as far as predicting the future and what path it will take - its very difficult.... there are many medications, etc.... that work differently for all of us... I'm sure you'll hear from other members about this....

Any more information you know right now that you can post may be able to help you get valauble feedback (type of bloodwork, lumbar puncture, biposies, etc?)

In any case, welcome, and everyone is here to help

[shiney sue]

of all welcome and 19 is a young age to find out you have any health
problem,it is scary. I found out i was a diabetic at that age and i just
wanted to hide. But sweetheart you can't and i'm glad your here. I'm
like my buddy Mel,i'm not sure i understand what your Dr. means by
a light form. I just wanted to say your doing fine,you have a right to your
feeling and anything you don't understand,just say so. There are some smart
people who will help you talk to your Dr. Listen,and good luck. Sue

[moose53]

((((((Katrina)))))),

Welcome to NeuroTalk

Questions: did the doctor say "light chain neuropathy"?? did he say "MGUS" or "monoclonal gammopathy of unknown significance"??

If he did, that's what I've got. It doesn't go away. I've had it (that I know about) since 1990. It doesn't go away. I've stabilized.

If I had the past 15-17 years to do over again, I would demand that they do plasmapharesis to clean the protein out of the blood to stop a lot of the damage.

I truly believe that all the research that's being done now will be able to, if not cure, neuropathy -- at least heal or repair it.

Now, the underlying causes for the neuropathy, those are all different. They're being worked on.

You need to keep your body healthy and READY for a cure. Eat right. Sleep well. Balance your life. Try to keep the chemical load on your body down (not easy in this day and age ).

That's all any of us can do is BELIEVE that there will come a way to repair/heal this. AND, like I said, if you do have light chain disease (like me), I would demand that they do plasmapharesis to get the extra protein out of your blood which will allay a lot of the damage. Light chain or kappa chain diseases are multiple myeloma, amyloidosis, and, what I have, monoclonal gammopathy of unknown significance (MGUS) which may or may not roll over to multiple myeloma if you live long enough.

Stay strong. And stay healthy. BIG HUGS.

Barb

[Yorkiemom]

Welcome to our forum. You will find a lot of good information here and hopefully you will be able to relax a little bit and not be so frightened.

It would help us if you could get the name of the diagnosis your doctor has written out in your records. We would have a much better idea of what is going on this way.

I think that perhaps "light" and "mild" are probably the same thing-these words might be considered the same in translation. I hope that you have a very mild case. A mild neuropathy would be translated as one that is not very bad. A light case of neuropathy would be the same. A "light chain" neuropathy is different, as Moose stated above.

IV Gamma infusions are usually given in a series and have helped many people with neuropathy. Do you know if your doctor has prescribed more than one infusion?

Also, have you been diagnosed with anything besides neuropathy? And has your doctor prescribed anything for your discomfort?

Are you posting from the U.S. or overseas?

Cathie

[Katrina Spain]

Sorry for my bad english. It is the origin of the misunderstandings. Ok i will try to explain again all. My neurologist told me i have a mild neuropathy, mild, meaning not serious, not light sorry i thought light was the same as mild, so Melody, sorry i meant mild. Ok so he told me my neuropathy is not very seriours he said it is mainly sensory neuropathy because i can walk, do exercise and all my activities normally. The weakness i have is ocasional, like the day i went dancing. But i am afraid this weakness can reappear.

Kmeb: yes the doctor said it is autoimmune neuropathy, he took a blood test, and i read it today again i have not normal ganglioside gm1, this is elevated. In the test results it says the normal is 23 and i have 40. The doctor didn't tell me the type of neuropathy i have, i don't know. Te only thing i know is that i have some demyelinating one, because in the nerve conduction test said that in the sesults, it said "demyelinating polyneuropathy". And yes the cause is autoimmune. BUt i don't understand this well, why are the gangliosides? Can they go back to normal? Is it difficult that they go to normal?

I receveid the IVIG two weeks ago and i feel the same. No results yet. The same sensations, my legs are crazy, they move by themselves, i feel strange thigs inside, very difficukt to describe, if strecht my feet they are like in cramps. I feel very strange things. When i am in school it is difficult to pay attention. I think all the day about these sensations. Does this mean IVIg don't work for me?

Shiney Sue i am sorry you too had a health problem since very young, so i know you understand me. My fear is this is always going to be in my body. Can the immune system be repaired forever?

I am afraid. i have read people's neuropathies here. I am afraid i will become worse, that one day i won't walk, o run. I am afraid this neuropathy can get worse. The doctor tells me don't worry. he says it is not serious and it has a solution. MY neurologist is so nice and very sweet man. I feel he tells me this because he wants that i am happy, that i don't worry. Because i read about other people here with very long neuropathies, i think he is only being nice.

My mother is so worried too. She sees me cry and she cries too. She tells me to listen to my doctor, she believes my doctor is not lying, that it will go away, but he is not a magician. I don't know what to think. That is why i ask you if neuropathies. I want to know if ivig is effective, what do you think? When is it effective? I have two weeks and no effects yet, when will it work, if ti works?

Does neuropathy have a cure? I have read yes and i have read no. What is the truth? That is why I ask Mel, if it is realist to think this neuropathy will never go or if it is just being dramatic?

Barb, thank you for your information. No the doctor didn't say light chain neuropathy. I am sorry you have this. I hope you the scientists will find a cure for this. you sound like a very nice person, i can feel you are a caring person, what do you mean wit the chemical load?

Yorkie mom, thank your for clarifying everything. The only thing i have is the neuropathy. I don't have anything else. In my records the doctor only wrotte demyelinating neuropathy, autoiimune, but he didn't tell me the exact name. About the IVIG, i only took one, but the doctor tells me i am going to need more, maybe in three months. For the discomfort, the doctor gave me a medicine that is lyrica, but after the ivig he told me to stop it so i can feel the effects of ivig. Finally i am posting from Spain, from Valencia.

You all are very nice people here. Thank you. I really feel that people who spend some of their time helping others are admirable. Thank you all. I wish you the best, happiness, a lot of blessings, and good health.

Katrina

[glenntaj]

--what the doctor apparently measured was that you have elevated levels of autoantibodies to the GM1 ganglioside, and that is damaging the nerves (particularly the myelin sheath that covers most larger nerves), leading to symptoms.

The gangliosides are particular biochemical components of nerve structures--it is possible to get neuropathies from antiboides to any one of a number of these structures (quite a few have been identified in the last twenty years, and there are probably more that have not been discovered and may be involved in those whose neuropathies are now labelled "idiopathic").

Take a look at:

http://www.neuro.wustl.edu/neuromusc...y/pnimdem.html

http://www.neuro.wustl.edu/neuromusc...ngliosides.htm

Antibodies to the GM1 ganglioside are often associated with motor neuropathies, especially acute axonal motor neuropathies that occur by molecular mimicry processes after infections. There is generally a good prognosis if the GM1 titer level can be reduced, usually through IVIg administration or the use of the drugs Rituximab or Cyclophosphamide (which work through immune modulation).

If they have caught this early, you may get an excellent recovery, especially if this involved an acute onset. Nerves an regenerate, thought he process is slow; remyelination can occur somewhat faster. Full recovery is uncertain, though, as remyelination can be patchy and incomplete.