Hi,

Sorry, I should have said CMT is not an autoimmune disease. An autoimmune disease is an illness that occurs when body tissues are attacked by its own immune system. Thus - body attacking itself. There are quite a number of diseases like that. Such as MS, Scleroderma, etc. Click on:

http://www.niams.nih.gov/HEALTH_INFO.../default.asp#2

No, we cannot just wish away whatever is going wrong with us. Thank you for your post.

OH, Kitt you did say' NOT an autoimmune disease'. I guess people must think that it is. I thought maybe you preferred it not to be thought of as autoimmune. Since some people discount autoimmune conditions for some reason.

Actually, some autoimmune conditions are also thought to have genetic links:

(from Wikipedia) Scientists such as H. McDevitt, G. Nepom, J. Bell and J. Todd have also provided strong evidence to suggest that certain MHC class II allotypes are strongly correlated with:
HLA DR2 is strongly positively correlated with Systemic Lupus Erythematosus, narcolepsy[7] and multiple sclerosis, and negatively correlated with DM Type

HLA DR3 is correlated strongly with Sjögren's syndrome, myasthenia gravis, SLE, and DM Type 1.

HLA DR4 is correlated with the genesis of rheumatoid arthritis, Type 1 diabetes mellitus, and pemphigus vulgarism.

I have Immune Deficiency (CVID) which may have a genetic connection (My immunologist is studying my 'brand' of immune deficiency, looking for a genetic connection).

I also have autoimmune conditions, mostly BECAUSE I have a deficient immune system. 25% of those with my immune deficiency (CVID) also have autoimmune conditions. So my immune system does NOT protect me from disease, but it attacks my body.

And finally I have Peripheral neuropathy, profound, which can be related to my autoimmune condition, but probably isn't. There isn't any direct correlation between Immune Deficiency and PN that I've seen. I also have severe Coronary artery disease and severe osteoarthritis....both caused by inflammation.

Inflammation is the bane of my existence. And the PN.

But I do think the methylprednisolone is stopping the inflammatory response from my last IVIG, since I haven't started one, and I usually do 48 hours after the IVIG.

YAY

Hugs, Elaine

Hi,

I do not "prefer" CMT to not be referred to as an autoimmune disease (body attacking itself). It is because CMT is not an autoimmune disease. It is hereditary. I've encountered people who actually go the other way. I refer a lot of times to the other more obvious diseases where the body is attacking itself - autoimmune.

I have seen the information about autoimmune and genetic links. Again, CMT is hereditary. No question about that one. I cannot help what other people think. I just try and set them straight when it comes to CMT especially. Have lived with it and researched it for years.

From your posts you have a lot going on. Hope you get it all straightened out. And good luck with the IVIG as it is for autoimmune diseases. It does nothing for CMTers. But, in saying that, it "may" have helped some with certain types of CMT. But not the most common types. Take care.

Hi Elaine, Lots of Hugs

I've had neuropathy for almost two years, but I know I had it much longer than that. I suffered for a long time before I went to the Doctor. I was actually relieved when I found out IT had a name.. I have always been strong, haveing an active lifestyle and that all came to an end. eventually I had to quit work. It was an emotional time for me, now I do what I can and adjust, my life is changed, my medications slow me down,and yes, I trip over things too,I have explained my situation to my family and friends because I want their support and love, and most just dont get it, and thats ok they will eventually. its been a humbling experience and Im ok with that. Dont let the unknown get you too upset, accepting is hard, but you will find the inner strenght to move forward and live the best life possible. Keep up a good natural diet to help your body to adjust and cope, you can do it

Hi Susanne,
I was out of commission the last few days. Feeling better now. My last EMG was probable about a year ago. All but one of them in the last 8 years was done at the same place. I'm sorry your have to go thought all of this. I understand why you say it gives closure but not hope.

Thanks for taking the time to let me know.

Good morning everyone !

Susanne....thanks for saying I'm cheerful......it's nice to have confirmation that it comes through on my postings

I got past the 'bad time' I was having and feel much better mentally. The lowering of my gabapentin has made my head clearer but the pain in my feet and hands worse. Of course I started a 6 day course of Prednisone on Tues of last week and even though it has not helped with any of the pain it sure has got me 'wound' up mentally.....lol......driving the kids and husband crazy with all the 'talking' !

About my pain meds......since all this is so new to me I've only used the vicodin and Xanax. At the end of Sept I did put myself on a pain mgmt. schedule (that my PCP had been telling me to do) 1/2 a vicodin every 3 hours during the day. I only use it during the night if the pain wakes me up. I add 1/2 a Xanax when it's really bad which is a few times a week....always when I use my feet or hands too much.

If I use a whole viocdin then I'm 'high' which is a feeling I hate. I've never thought about using something else for the pain. Would love some suggestions ? And info on how they work for different people ? I've used the 'pepper' cream on my feet that burned my hands but I felt absolutely nothing on my feet. I quit using it after 4 weeks. I am now using the Morton's Epson Lotion......it doesn't seem to be helping either but I'm going to keep using it for a while.

And accepting this.....severe small fiber neuropathy......my feet are 'devoid' of A and C fibers. Every time I see my biopsy paperwork I shudder. I'm pretty sure I haven't come to terms with it yet. I KNOW I have to pace myself everyday and really do try but I so need to 'sweep' that floor or 'clean the toilet'. We're leaving for Panama City Beach tomorrow morning. So yesterday I got the suitcase out and packed a few things. I was feeling pretty good and was 2 hours late taking my vicodin. It hits me like a bullet....BAM.....oops.....forgot to take my pain meds and now I feel like I'm going to die....have to go to bed for 2 hours to get my feet off the floor and let the pain med kick in.

Emory Dept of Neuro - Atlanta March 25, 2014.....my Gyn called me the week before Christmas and was upset that I cannot get in until March....she asked me to call Emory and see if they have a list they can add me to in case someone cancels a 'new patient' appointment before I have mine. I only live about 45 min to an hour away and could get there fairly quickly and easily. I'm going to call them when I get back from Florida and see if they can do that for me. At this point in my condition all I want is to be able to clean my house, grocery shop and cook. Simple....that's all I want right now. I have faith and will keep searching. Hopefully Emory will come thru for me.

I wonder if they will retest me on things I've already had done ? I'm sure they will order all new blood tests but don't really know what to expect after that.

I've jabbered on long enough. Thank u all so much for the support and info I receive here.

Debi from Georgia

Hi Debi from Georgia: We lived in Gainesville for 12 years. Lovely part of the country.

And Emory is a GREAT RESOURCE.

I can really identify with: At this point in my condition all I want is to be able to clean my house, grocery shop and cook.

That IS all I can do. And I can't actually clean the house, I just clear everything so a fabulous crew run by the sweetest lady, can come in every other week and really CLEAN the house.

It exhausts me just to move everything to the right places, and out of the way so they can get to the floors, counters, sinks, and stuff.

I gave up getting my 'fancy nails' to help pay for the help and it's so worth it.
My husband does all the remodeling (doing the kitchen right now, and will, for example, install a ceramic tile floor once the granite counter tops are put in professionally) and all the yard work and still teaches part time at 74.

So wonderful to have the house ALL CLEAN once every two weeks. And then to know that it will get ALL CLEAN again.

We just spent three days with family over Christmas, and of course I just sat on the couch while everyone bustled around. I cannot help with preparations because I cannot walk around with other people walking around me. Just getting up from the couch is a great effort.

We went to a Christmas Eve candlelight service at the National Cathedral, and I had to be dropped at the front door. At one point we were near a far parking space and someone said, well you just have to climb those stairs! There were probably three flights of stone stairs going up from the parking lot...maybe 50?

I just said 'no' and they took me to the front door, WHERE, they found an amazing parking spot right by the front door as someone drove away. YAY. So they were even grateful for my disability.

The fact that I look 20 years younger than my age, and the radiant picture of health doesn't help a bit. Nothing about my many conditions shows. Except when I try to walk, which I almost never do.

I cannot take any RX pain medication with any relationship to codeine. So pain management is always a challenge. Right now I'm on Methylprednisolone to counteract a very difficult reaction I have to an IVIG treatment. It is definitely helping with pain. My basic pain medications include Aleve and Cymbalta.

I do all of my shopping 'on line' except for groceries: YAY grocery carts!

No one ever 'Jabbers on long enough'! The talking about what we are doing is CRUCIAL to our well being. And we simply cannot talk to most of those around us.

Hugs, Elaine

So, here I am with an update:

In 2011 I began diagnosis of Primary Immune Deficiency Disorder.

In 2013 I began treatment with IVIG. It hasn't affected my Profound Peripheral Neuropathy, but I haven't had one illness since I began the IVIG.

IVIG is extracted from human blood and it takes 1000 to 10000 donors. Therefore each monthly treatment costs over $14,000. Fortunately my insurance/medicare pays for the treatment, which I receive at the Duke Infusion Center.

I have tried several things for my Profound Peripheral Neuropathy, including physical therapy when I noticed that my knees were knocking and my ankles were turning in. I 'failed to show improvement' after treatment 2xweek for five weeks. I liked the therapy and was crushed that I had not improved. My calves and ankles have atrophied to skin on bone.

I also visited a neurologist, in late August, who specializes in the neuromuscular problems of neurology. He tested me for CMT, which I do not have. Otherwise, he was only looking for causes and gave me no expectation of improving my functioning.

In the meantime, over the past two years I became aware of SFN, Small Fiber Neuropathy which affects my arms, hands, fingers, face, lips and tongue. I am on 3600 mg of gabapentin (neurontin) and that helps stop the stabbing pains in the tips of my fingers.

My Duke Research Immunologist believes that my defective immune system, which cannot defend me from infection, also attacks systems of my body, including tear/saliva/moisture, bladder, and my nerves. When I have IVIG my immune system throws a fit and attacks me with pain, fatigue, depression and itching burning skin. Talk about irony!

I keep trying to use the cane and hate it. When I tried it for about three days I wound up causing pain in my hip! I was hoping it was stop the horrible feeling of unsteadiness, but it really didn't do that, either.

I guess I'll go along until I am ready for a walker!

Otherwise my health is better than it's ever been. The IVIG keeps me well, and I have to take 2.5 mg of Medrol daily in order to be able to tolerate the IVIG which I need, and that helps with so many things.

So I'm healthy, my pain level is minimal, and I exercise at my health club, since I mostly sit at home, except for moderate house work.

Hugs, ElaineD

What about trekking poles? That's what I use and they are light, strong and give me a good sense of control. I've yet to feel like I might fall.