Hi All.

Two weeks ago, Alan and I attended the monthly Neuropathy meeting in NYC. The doctor there (if any of you read my posting on this), well she spoke at length at neuropathy, the various causes and CIDP.

I distinctly asked her "Is CIDP, inherited, and does my son have to get this?" She looked at me and said: "NO". So naturally I breathed a sigh of relief. Now I don't know why I did that, given the fact that his mother had Guillian Barrre and, even though, a gazillion doctors and specialists have told us that Alan's neuropathy had nothing to do with his mother's GB, and even his present neurologist said it's not linked, and she's the one who said "you have CIDP, because there was protein found in your spinal fluid", when I asked her if Alan's mom's GB could be linked to Alan's condition, she said "not likely".

So just now, I read an article that indicates the researchers have found a gene linked to CIDP.

Here's the article. Perhaps many of you have seen this before!!!

http://www.gbs-cidp.com/readarticle.php?article_id=21

So if I'm told that my son won't inherit neuropathy, and this doctor said "no, your son won't inherit neuropathy, then why, all of a sudden, am I reading an article that says "there's a gene" for CIDP.

I am extremely confused. I know most things in life are genetic, I understand this. But I've been told for 18 years that Alan's neuropathy had nothing to do with his mom's GB, and, well, can you see where I am confused here??

Thanks much,

Melody

most diseases are genetic. Meaning people have a tendency to have certain ones if they have certain genes.

Not all doctors understand everything. You have to keep that in mind when
you listen to answers from them.

Autoimmune diseases are inherited...the tendency. Not all manifest in everyone.
It is thought a trigger causes them..a viral trigger. This is true for diabetes Type I and with time we will learn more I expect. Fibromyalgia is thought to be inherited too. At the seminar I attended we were shown figures showing 8 fold increase in relatives who are related to Fibro patients. Fibro is also triggered.

So don't expect an answer that is yes/no. I don't think there is one.

I think because we have dominant and recessive genes, (my cousin and his wife happen to carry the recessive gene for Jouberts Syndrome, hence their daughter was born with Joubert.

I think it's all about the genes we have in our body. If we carry some, or if we pass them on. We have no choice but to pass them on if we become parents. But if we do not have children, and our bodies contain the gene for this, or the gene for that, I think the best thing we can do is follow what Dr. Oz says on Oprah. Try and eat as healthful as possible,don't drink to excess, don't smoke (I know that's impossible for some people), but if we try and do what we can for our bodies, then maybe we might have a shot and not developing the diseases our parents and grandparents do.

Oprah had a guest on last week who said such things. She said, My whole family background is full of cancer, but I don't have it, and I'm doing my darndest not to get it. She says attitude plays a big part too.

And relieveing stress. Not putting ourselves in stressful situations, and if we find ourselves in such situations, to find methods of coping. Easy to say but very hard to achieve.

We just do the best we can.

So thanks much for the answer on the genetic stuff.

Much appreciated.

Melody

Neuropathies are either: Toxic, Trauma, Inherited or Acquired.

There is a lot of research being done in the last 3 years [since I got web-wise] that is pointing to the fact that CIDP/GBS is either primarily ACQUIRED or to a far, far lesser extent, a potentially inherited trait. I will be further MORE blunt in the fact that since [tho not proven] that CIDP or even GBS is DEEMED an 'acquired' condition...that once one reaches the 'age for Medicare only' You are out of luck in most states for IVIG coverage for CIDP. As laws are written today...that can change with education and advocacy tho.

First off, re-read the St Louis University stuff...go to the index and see which aspects of GBS/CIDP are inherited or not and I suspect that Alan will not meet the criteria for genetic testing...I know that I either did not meet the criteria for further tests or that my DOCS deemed that the costs were not warranted. Genetic costs are very, VERY,VERY Expensive!!!!!!!! Most docs don't go further as their goal is to Treat, and they are under great pressure to keep all testing and therapy expenses as LOW AS POSSIBLE! Therefore they do not test. Mail order is NOT the way to find out....ever.
St Louis Univ. Index is here: http://www.neuro.wustl.edu/neuromuscular/alfindex.htm
READ THE WHOLE THING! There are variants for each and every condition. AND they all overlap a whole slew of other conditions to boot! Go and confuse yourself. IF I can sort it all out, I am sure you can!

I do know about the genetic test factors because of my cancer last year. Insurance covered the costs but let me tell you it was equal to 3 'rounds' of IVIG therapy in terms of expense. I know that there are many potential 'Inherited Factors' that can/could/do contribute to my issues--BUT I also know that treatment would offer nothing different. It only told me about a possiblity of 'recurrance' [essentially the ODDS?] given my specific gene profile for that particular condition. I won't specifically say how much it cost, but it did have a dollar sign, two digits and a comma before the decimal point. Most genetic testing is ONLY done after a whole heap of review and additional scrutiny about the patient and their situation....Do you want a disability review of both you and Alan because you asked for additional testing? This is something I would talk very long, clearly and thoroughly with my doctors about. You can win in some ways, and then lose big in others... Melody, Just count your blessings that you have good docs trying to do RIGHT by you and Alan, Soo many folks here do NOT!

If it were me? I would chill on the whole issue. Best to keep lots of stuff quiet.

I'm not opening my mouth anywhere else but here. Alan doesn't even know i asked the question about this topic. He just does the IVIG thing.

My god, you get to be a medical specialist along this journey, now don't ya???

Thanks much my dear. What an eye opener!!!

Melody

One: posting or 'putting it out only here' means that any medical profession who know's your e-mail address or your past circumstances CAN find any and all you say here? I am sure the folks who want to find 'dirt' regarding abilities or disabilities could be easy to find....Being honest is a good quality, but being too open about one's life can put you on the front page in an unuseful way. Plain and simple.

Two: I never expected, nor every anticipated that I would have to learn a new language[medical] or soo much stuff about medical issues JUST to get myself diagnosed and then treated! I was not internet wise at the time I persued my whole body intuitive sense of SOMETHING IS NOT! ABSOLUTELY NOT RIGHT HERE! Docs are going don't worry? DUH? Excuse me. I simply followed common sense and my 'nose' so to speak. BUT in the process I learned that I had to speak to docs in terms they spoke to each other about us? Best offense?=Good Defense!

As for the IVIG thing? Please re-read all the posts I put out here to you For ALAN about all the IVIG experiences one can encounter... Alan never came close to anaphalyptic shock - I did! Forgive me for being blunt but if you want to talk scary event? That is a real FRANKENSTEINER! Not a holiday by any means...As for LEARNING how to talk to docs, drug reps and hospitals? Not to mention state officials about potential bad-training and/or mal-practice, Lady, I have been there! and saved lives with a medication refund and proper nurse training that saved OTHER lifes..not mine.

As for other issues? Oprah just brings up the simplistic generalities...I have rarely found such shows to go really into the depths of despair that many of us have gone thru.

Melody frankly I am in all honesty glad that you CAN walk 20 blocks to go to a whirlpool! I am jealous for you. I am simply glad I can get to my car, drive a mile in a car and get some milk in the grocery store! Any attempts to walk so far would surely put me either in bed for a week or in the hospital.... I am glad you are doing so well, as is Alan. I am not.

BTW? The Procore Machine looks like a 'pseudo mechanized version of a Pilates Ball. Why not just get and DO a ball? Cheaper and easier by far.

One does have to be a medical specialist--at least in one's own conditions and tendencies, or those of one's family.

The problem is, especially the way medicine is now practiced in most places, doctors don't have the incentive or the inclination to get at the causes of anything remotely complicated. And when it comes to conditions that have autoimmune components, or, often, toxic or hereditary components, the situation is almost by definition going to get complicated, inasmuch that I agree that many of these conditions are not DIRECTLY inherited, but the genetic tendency towards them IS, and given the "proper" environmental stresses or triggers, the tendency will be expressed.

Generally, only patients or their loved ones who have to live with these things every day have the desire, or the need, to really delve into the causes and the research. Even those med people who are researchers by inclination are often so because they have a friend or family member with a condition that they want to track down the beginnings of.

In Alan's case, I don't think the neuropathy is DIRECTLY inherited. But certainly, the tendency to have an autoimmune mediated neuropathy probably was. We already know he has another autoimmune condition (psoraisis). And, since both Guillain Barre Syndrome and CIDP, as well as a number of other autoimmune neuropathies, are suspected to often be triggered by particular bacteria/viruses (Epstein Barr, Campylobacter jejuni; and Haemophilus influenzae notably) producing a molecular mimicry process, what Alan has probably inherited is a nerve cell structure that is very much like those of some of these pathogens and which would be especially prone to a molecular mimicry cascade. As such, the fact that his mother had Guillain Barre is quite relevant.

I also suspect that we are exposed to many more potential "triggers" than we used to be--not only are there amny more toxic substances floating around than a few hundred years ago, but bacteria/viruses vector among populations in far-flung locations far faster than they used to.

dalek and Glen thank you, very well said,very well...Sue

Thanks Dahlek:

Read you loud and clear. And these past two days, I coudn't even get to the whirlpool (when I really needed it), because I can't even straighten up. It's raiing cats and dogs outside and because I have degenerative joint disease, for the past two days, I look like a little old lady. Can't even open my fingers. And forget about what my knees are doing. Today, they are singing.

I never in all my life will understand that if it was 100 degrees outside, I could straighten up just fine, but make it 50 degrees with 100 degree humidity, and I'm stopped in my tracks. Arthritis, in my case, is most bizarre.

And because of my scoliosis, I never know when I'm going to be him with a WHAM, a big thing of pain, right between my shoulder blades. Enough to knock the breath out of me.

I wish I could take a nice bath but I could never get in and out of a bath tub. God, do I miss those nice hot baths.

I'm afraid to even take a really hot shower because it will make my toes start to burn.

But hey, you guys have it a lot worse, I know this. I just take my methyl b-12 and wait for the summer to once again rear it's lovely head in my neck of the woods. Until it does, I will just straighten up as best I can and walk when I can walk and rest where I can rest. It's unbelievable how one day, I can go for a long walk and the next, I can't open my hands.

I'm sure there's a pill for this, but god only knows what side effects it would have. I do know one thing. My body does not like cool weather, rain, humidity, etc. My body loves 100 degree weather. I met an 80 year lady yesterday while I was getting my fruits and veggies. She said "I would rather have it rain and be like this than if it were in the 90's." I said "you've got to be kidding, you like it now??" She said "Oh, yes, I can't stand the heat". And she walked with a cane and had arthritis.

I've had this arthritis since I was 40. Imagine getting arthritis at 40. No one told me why I got it. I never asked. I figured I weighed 300 lbs, that's why I got arthritis.

I will never understand arthritis.