[Monica de Lara]

Hi there. Sorry for not posting for so long, i was on counseling and my psychologist recommended i no longer entered this website. According to her, the only thing it was causing in me was fear. And yes i was getting scared from all the difficult experiences you expose here so i decided to follow her advice. Today i feel i need to talk, so i am going to try to write a post from my Herat.

I have to say it guys, my neuropathy is quite mild, compared to many’s, compared to almost all people’s here. I am able to walk, run and do all my stuff. I spend time with a lot of people who don’t even imagine i have a health issue. I actually look like a completely healthy and young girl,. The thing that hits me is that i am not and i don’t know if i will always look this way (not young, but healthy). I am afraid of not always being able to live my life independently . I am young girl (only 23) i am starting my career, i am in the search of my way in life, a couple, a family of my own . What if i go worse?? How am i going to work if i get disabled???, Who is gonna love me this way??? How am i going to live my life?? These are thoughts that always cross my mind.

When my neuropathy started (about a year and a half ago) it was just odd sensations and pain. Very weird sensations, as feeling worms swimming along my legs, as feeling a piece of cardboard underneath my skin, as feeling sudden fasciculations, as feeling knives inserted in my legs and a bunch of cramps and other stuff. I went to the doc and the search for the cause started. He said “you have a polyneuropathy”, it was confirmed by a EMG. Well, “what kind of polyneuropathy is this? And the search continued. “It is an autoimmune mediated one”, said the doc. Ok, autoimmuned mediated neuropathy… Is this CIDP? Doctor says no, i say i don’t know, because i receive the same treatment people with CIDP get (IVIG and Imuran), but i have never experienced loss o balance or energy, fatigue, weakness. So is this a mild form of CIDP? Or is it something else?? If it is something else, then what is it???? What is its name?? Does it have no name?? What do you think???

My fist treatment was prednisone. It gave me no releif and the only thing i got from it was extra weight and a terrible acne i am still dealing with (after two months of totally giving up prednisone). Since prednisone didn’t work we took the next step, which was IVIG. IVIG has been excellent for me. I feel very different now. But it was also extremely expensive. I am not poor like, unfortunately, many people in my country are. But still, it would be imposible for my family to pay this treatment if i need it for a lifetime. I keep feeling guilty, because i don’t think it is fair for a man who has worked a lot during his life (my father) to spend all the money he has managed to save in some medicine. People with CIDP need to get IVIG every month or so to be able to walk. So, what if i eventually need IVIG that often???. So far i have only had two IVIG infussions we were able to pay for. My doctor says this is all i may need. But how and where am i going to take the money if i get worse and i need it on a regular basis???? I didn’t have an insurance when this all started, how was i supposed to imagine i would get sick??? And the public health system in my country is lousy. I keep worrying about this and it has been added to my health problem.

After IVIG and a 30 session hyperbaric medicne treatment i took (of which i will talk to you in more detail in an other post) i recovered well. I don’t know if it was IVIG, the hyperbaric chamber, or both combined, but i had an EMG done and it showed total recovery. My nerves and my velocities and everything, according to the test, are normal!!!! This gave a lot of hope, but i also made me Gonder: if my nerves are ok now, why do i still have this odd sensations and pain??, are they healing sensations???, or is it that my nerves are being once again attacked??, or is that this damage is permanent and they are always going to remain this way???. My doc tells me to think positively and to expect them to heal, but is it realistic to expect to have my legs completely normal, as they were before having the neuropathy??? Or do you think i should just asimílate the idea of living life with this pain and sensations???

Currently my main problem, as i told you, is still the pain and sensations. They are not as bad as they were but i experience them 24/7. Since my work is mainly intellectual it has become very hard for me to focus and concentrate. I wish i could take off my legs and think clearly for a while. Of course this is not an option, so i need something to get some relief. I am on Methyl b12, do you think i should be getting any other supplements??, which ones??.

I have been considering trying the “Rebuilder” i heard about here. Do you recommend this device??, is it as good as the web page claims??? Have any of you used it???, do you think it will work in my case???. I would like to try this device befote going to drugs. I was on lyrica (150mg a day) and i didn’t notice a difference. What other drugs do you recommend?? Do they work for both pain and sensations???. What else can i do to get some releif???

Sorry for this long, whiney and boring post. But i have no other place to Express my feelings. My parents must be already very tired, besides they are dealing with their own problems. Friends try to be understading, but cannot be when they haven’t experienced what i experience every single day. So guys, thank you for reading me.

[mrsD]

I guess I was on my summer break when you came on here.

I am very interested in the hyperbaric oxygen treatment. So do please post
about it in detail.

How old are you? Do you eat a wide range of foods? Some other nutrients
may be helpful for you. Magnesium, Thiamine, are two that work for many of
us. So can you tell me what you are taking besides the B12?

Being tense and anxious will increase inflammatory chemicals in the body and make pain and nerve pain seem worse. What drugs were you given for this if any, besides the IVIG?

Also have you read about gluten, and neuropathy? Some people show their symptoms to the reaction to gluten in their nervous systems. We have a Gluten board here to visit to learn about that. Removing gluten is something you can do without a doctor and if it is going to work for you, you should see some indication after after a couple of months. You can be tested but I don't know how Mexico is with the names of tests etc. Or their likelihood to do them there.

Are only your legs affected? Do you take any other medications for other reasons?
Sorry for all the questions.- I'd just like to get a better handle on what is happening to you.

[Silverlady]

Hi Monica,
I hope some of will be able to help you a little. I'm curious, did you decide to take the methyl B12 on your own? or did you have a low B12 count?

Several of our members get good relief from the Rebuilder. I actually did until it became too hard for me to lift the water tub because of my arthritis. If you can afford it, I don't think it would be unreasonable to try it.

How did the doctor determine it was an autoimmune mediated neuropathy? Did some of your tests determine this?

I hope you will get some good answers from people. I don't have much to offer you in the way of knowledge. The only thing I know well is arthritis and Sjogren's Sydrome.

Good luck,
Billye

[Dakota]

Monica, I can see that you are filled with fear about your situation. The realities of your situation make this logical. But consider this. No one on earth can claim complete security, be it financial or health-wise, happiness, or whatever. The most we can do is to try to live the best life we can, make the best choices for ourselves. Many people with problems as severe as ours find help in their faith with acceptance of the uncertaincy of the future. At any rate, all of us have faced the same fears that you have and many of us have learned to deal with them and find peace and hope. Since you are young, I wanted you to know that you do not need to succumb to fear and hopelessness. Try to take things in smaller bites, rather than worrying about the entire rest of your life. Peace and light be with you.

[glenntaj]

--and not sure whether you mentioned it before--how did this neuropathy begin, and how quick was the onset?

Thre are many varieties of immune-mediated neuropathy, and they can have acute, subacute, or rather slow onsets. Moreover, they can affect primarily the larger fibers (the kind that can be tested using nerve conduction studies), the smaller, unmyelinated fibers (the kind that subsume the sensations of pain and temperature), or both. It may be, from what you've posted, that you've had a Guillain-Barre like-syndrome that affected both small and large fibers, and the larger fibers have "healed" somewhat, but the smaller fibers are doing so more slowly. In fact, it is possible your sensations are those of regenerating small fibers, which can, as they grow back and attemtpt to re-enervate their original targets, produce "weird sensations" (parastheses) that the brain has trouble interpreting.

AND--there are also numerous variations of CIDP, including a predominantly sensory variant that has as primary symptoms pain/tingling, rather than motor difficulty:

http://www.neuro.wustl.edu/NEUROMUSC....html#cidpsens

It may really be very difficult to tell any of this, though, without proper testing, and from what you've written, that may be very hard to do in your part of the world. The improvement with IVIg does point to some form of autoimmune process--and many people have been prescribed it "off-label" for unusual neuropathy presentations and have benefitted--but as to what is really going on, that may take a nerve or skin/punch biopsy, and probably many more tests than you've had. (Have you seen the test spreadsheets at www.lizajane.org, by the way? It would really be useful to get a lot of autoantibody testing, as these, if they are found, have strong prognostic implications.)

My sense is that since you are young, if this had an acute onset, you can probably expect some slow recovery, though complete recovery is unlikely. But you may recover to the point that you can lead most of a "normal" life.

(I myself have gone through an acute-onset body-wide burning sensory neuropathy in which autoimmune molecular mimicry processes are suspected, but have never been proven. I have had, over the last 4.5 years, considerable, though not complete, recovery. And I do take a wide variety of supplements, including B complex, seperate sublingual methylcobalamin B12, consdierable fish oil, R-lipoic acid, magnesium.)

[fanfaire]

I will leave the neuropathy-specific replies to those who know more about it. But if you don't mind, I'd like to address some of your fears.

No one has any guarantees in life. You can have great physical health but still not be happy. Or you can have some health challenges but still lead a contented and productive life.

Yes, unpleasant things may happen to you. But they do not have to mean the end of the world. You are probably more resilient than you realize.

I can say from personal experience that it is possible for someone to love you even if you are sick. I became ill just weeks after I married, yet my husband did not fall out of love with me. No matter what happens to my health, I am confident he will continue to love me.

I have become disabled and cannot work, and I do not know how I will pay my bills. But that is not the end of the world either. I do the best I can, and am content to let that be enough.

And that is my main message to you: that as long as you do the best you can with what you have to work with, you don't need to be afraid. If you are completely in remission right now, celebrate that. If you discover you have an ailment that is likely to be lifelong, learn what you can about it and do what you can to stay as healthy as possible, and let the rest go.

The unexpected is a part of everyone's life. The real measure of success in a person is their capacity to adjust after adversity. I can see why your therapist would think reading a forum like this would worsen your fears, but this forum is also full of examples of people who have good lives despite physical pain and illness.

When I first got sick, I feared and despised lack of independence. Yet, when it actually happened, it was far less horrendous than I had imagined it would be. Yes, I would rather be able to take care of myself, but I was surprised to discover that it makes people feel good if they can help you, so I have learned to accept help from others and let them know how much I appreciate it.

And remember, even if bad things happen to you, good things will probably also happen to you. Don't get so freaked out by the possibility of bad things that you fail to enjoy the good. You will still be you, no matter which way it goes.

fanfaire

[Kathi49]

Monica,

I think everyone here gave some great responses.

But I just wanted to address what your Psychologist said. I think he or she has a very good point. I have often wondered about this myself and I will admit I post a lot...usually on BT. But there are times that reading too much can really get me down and does make me fear things. And, honestly, my own NS said to stop concentrating on the pain so much. I didn't know or understand what he meant at the time but I do now. I mean how can we ignore something that hits us almost every day? What I THINK he was saying is to find things to distract me and in truth he is right. My PM doc feels the same way. To me, there is nothing wrong with talking with others and getting ideas or advice and even being supportive. There is also not a darn thing wrong with researching your own conditions. BUT...I can also see where the forums of any kind can become your life...very easily. Honestly, I try to post in the early morning or late at night. As for the rest of the day, I find other things to do...no matter how small. I HAVE noticed that if I am doing my "own thing" which is really my hobby of Genealogy; I get so lost in it that I FORGET the pain....as weird as it may seem. So, just wanted to say...there IS something to getting too wrapped up in it...I do agree.

[dahlek]

From your therapist...well Maybe he/she feels you are getting too much too soon? Further, we all come from so many different worlds and circumstances than you do that you might be processing our information out of context.

I say this only because of my own experiences, learning the medical 'lingo', then the terms used for our problems': parathesias, ataxia, diathesias whatever! I found that Ihad to try and understand what all was going on wrong with me! Well, you really need a dictionary next to the 'puter screen to sort it all out! Does it all add to an overload of stress? Yep! Are we already stressed in ways our parents, best friends or spouses cannot relate to? Yep. What do you do about it? Chill out and try again, at a slower more tolerable pace or get mad, or give up. I myself chose a combo of Chilling and Slogging...neither are fun, it takes work to learn, but, if you DO learn, things come lots easier...Believe me when I say that in my prior life[?] I was both an arts type person and a number type person. The medical stuff is simply like learning a new language...easy for some in some parts, hard-very for others.

I was never the 'scientific one' in my life, I have found I have had to LEARN, sometimes fast, sometimes slowly all the 'vocabulary, terms and technical stuff' that comes with this well NEW life?

There was mention about that demon called FEAR of the unknown. If you read any and all posts, especially the 'old timers'? It is there, It is always there, difference is we all are trying very VERY hard not to let it GET to us! I like to think and hope we succeed to some degree.

My sense, a personal opinion only...is that you have done far more and gotten far better treatment than many with your condition [admittedly not recalling everything]. Not everyone needs/requires IVIG or steroids for a long time-I truly hope you are a LUCKY one! They all have side effects which are known or not yet known...We gamble with every pill we take.. But THAT both you and we try...? Well, that's not a bad thing? We each learn from each other's experiences - that's what and why we give of each other to do.

If your therapist doesn't like what I say, well, have him/her contact me so I can truly 'elighten' them of the way this all feels and what it does to a person trying to have a life! I promise you I would not be shy!

Do not dwell on the worst that can happen, please, think as Fanfaire has said about doing what you can working around any handicaps/issues...As you know there are some very brilliant people out there changing the world...Look at Stephen Hawkings? We are surely not there yet and not for a very long time...So we have time to do really amazing things, somehow and way!

's and more! - j

[Monica de Lara]

I wanted to thank you for the time you devoted to reading my loooooong post and aswering my many questions. I am sorry our sickness was the reason we were able to meet, but i am happy i have met you guys. You all have shown your kindness of heart and generosity, i am sure you are and will be given that back. If you were here next to me, i would give you all a big hug!

Regarding to my mood, i am feeling better now. You all are right, as you said before, no one has certainty. There are good days and bad days in everyone's life. So i am learning to deal with the difficult ones. I have been reading about buddhism and its ideas. I am not a buddhist person but i do feel there's a lot of wisdom there.

I will try to anwer the questions you have asked me to help me better.

I wanted to say something about the health system here in Mexico. It think there may be a misunderstanding here. When I said it was lousy i meant it is, not because it is old or bad in itself. What makes it lousy is the fact that it is not enough for all the people who need medical services. It is a myth that we have no technology or medical advance here, the difference between you guys and us, is that in your country these services are widespread, whereas here in Mexico they are available to very few people. So in conclusion, please tell me the tests i need to get done, of course i am likely to get them here.

Mrsd
Be sure you will have the information regarding to my experience with hyperbaric medicine, i will post it here.
Regarding to your questions i was on IVIG (twice) and i am on Imuran. I also take Novotiral which is thyroid hormone because i also have hypothyroidism. My neuropathy is mainly in my legs, but i ocasionally experience it in my arms though.

I became interested in the gulten related neuropathy. I had never heard about it so i searched some articles and I read them . I am thinking there’s a chance I have that because I was discovered some antiganglioside cells in my blood. I read that can be related to gluten intolerance. Could you explain me a bit more about that?? What test do I need to get to confirm gluten intolerance??. I visit a nutriologist to loose the weight I gained while on prednisone, so I could ask her about the gluten, but could you please tell me how can I now if gluten intolerance is related to my neuropathy???

Silverlady
I never got a low b12 count I decided to take it on my own because Melody recommended it and because rose said there’s no way of being damaged by it. Am I wrong?? The main difference I have noticed is that now I am so full of energy. My nerves, as I said, are better. I guess it is the effect of IVIG, hyperbaric medicine, b12 and all I have taken…

I am thinking about taking B complex, fish oil and magnesium. But i am wondering: isn’t this too much for my liver and my whole body??? (given that i also take novotiral and immuran)

Glenntag
About my onset, it was just weird sensations. I don’t know If I can call it acute. It just started like odd sensations in my tighs. After a few months it extended to my calves and feet. The sensations became stronger and more frequent, but that happenned probably in six months.
Regarding to a nerve biopsy I was told it won’t help diagnosis much, it will help to see how much damage has been done, but not the cause. Of course I can get a biopsy here, but I don’t really think it’s necessary, my doc doesn't either.

Dahlek and Kathie

Regarding to what I said about my therapist, don’t get me wrong please. I just said it because I wanted you to know the reasons why I had been absent long. I am sorry if this sounded somehow rude. It was not my intention, despite of her advice, I am still visiting this site because I have learned a lot and because I have received comfort from your words.

And about the learning process. Well it is something else we have to do and I am willing to do. I believe doctors know a lot of course, but they don’t care as much as we do. That surely makes a difference.

I send you hugs too and thank you for your words.

Fanfaire: Thank you for your sweet words.

Thank you all again!

[jccgf]

If you check out The Gluten File linked in my signature and scan down the right bar, you will see a page on diagnostic testing. The most important antibody tests to determine if you have gluten sensitivity are the antigliadin IgA and IgG. There is also a page on neuropathy that might be of interest to you, and you might find others applicable as well.

You might consider having your doctor contact one of these doctors~ both expert in the field of gluten sensitivity and neurological disease. They would be best able to suggest the correct diagnostic testing for antibodies associated with neurological disease. I have read that antiganglioside antibodies can be associated, but there are others that can be as well. I've also read that IVIG therapy is sometimes used.

(Hadjivassiliou papers linked to his name)
Marios Hadjivassiliou, Senior registrar in neurology
Department of Neurology, Royal Hallamshire Hospital,
Sheffield S10 2JF, United Kingdom
m.hadjivassiliou@sheffield.ac.uk


Russell L. Chin, MD
Norman Latov, MD, PhD
Peripheral Neuropathy Center
Weill Medical College of Cornell University,
The New York Presbyterian Hospitals,
New York, New York
Celiac Disease and Peripheral Neuropathy, Norman Latov, MD, PHD 2002

Celiac neuropathy, Chin, et al 2003



Hope this helps!

Cara