Confused

[Tumericmiraclewoman]

My Nueromusculer doctor said my genetics test had a grey area that mostly happens to come on as a baby or young child. She did not tell me the name. She decided to say I have CIDP. Has anyone any idea what the grey area would be. My voice is too bad to talk on the phone much...didnt feel like repeating myself

[Amanita]

Sorry, Turmericmiclewoman, I'm baffled.

I had to look up CIDP, (Chronic Inflammatory Demyelinating Neuropathy), as I'd never heard of it. It does seem to have some features in common with CMT , but is unlike CMT in that it can apparently recover and relapse, it is thought to be an autoimmune disorder and that there are medical treatments for it.

Never heard of genetics test having grey areas, but I have no medical training.

I do hope you will manage to get access to proper advice and treatment.

[Tumericmiraclewoman in reply to Amanita]

Thanks me too! I do wonder something else. I have noticed that i feel better in the late evening and night time.

[cmt_exercise]

Have you had any testing for CMT in general?

[Tumericmiraclewoman in reply to cmt_exercise]

Yes. The only thing the dr. Said was there was a grey area. That if it was CMT it would have shown up when i was an infant or young child. She wants to treat me for cidp just to make sure i guess...

[Djbomer in reply to Tumericmiraclewoman]

Hi. In my opinion it is noticeable in childhood to some body who has it or an expert. A child would be clumsy and may have high arches. It normally starts to show in late teens.

[Tumericmiraclewoman in reply to Djbomer]

I had small heals and urinary infections and then birsitis on both knees at 11ish. My knees always bent backward all my life too

[cmt_exercise in reply to Tumericmiraclewoman]

A genetic test would confirm beyond doubt CMT, same with a nerve velocity test. Sounds like you need a new Dr.

[Tumericmiraclewoman in reply to cmt_exercise]

My dr

Did say a grey area on my genetic test. My doctor didnt want to do a nerve test because of permenent numpnesd. I will give her until my next appt. In a few weeks

[cmt_exercise in reply to Tumericmiraclewoman]

A nerve test won't damage nerves, so using the excuse of permanent numbness is bizarre - definitely time for a new Dr!

[Tumericmiraclewoman in reply to cmt_exercise]

Ok. I will tell her.. maybe i can find a genetic dr. Close enough. I already travel over 3 hrs. To see this dr.

[Ilsesmi]

It is a hereditary gene. A neuromuscular degeneration of the muscles and you are borne with it. Is there others in your family that struggle with the same symptons?

[Tumericmiraclewoman in reply to Ilsesmi]

No others but we do have problems building muscle in my family

[Alice-Ann]

Write your Dr. or have someone call for you and ask your Dr. to send you his report or findings by snail mail or computer. Don't act helpless unless you wish to sit and feel sorry for yourself for the rest of your life. These are harsh words, but you must become the fighter with this disease and stand up for yourself, or get someone that both can and will. You have to fight to get better, as most doctors don't have a clue about we all have. Ask questions on this blog and there are plenty of others that I am certain will help you if you change your attitude to that of a fighter and "what can I do to make things better for me"?

Hugs,

Alice-Ann (80 year old from Dallas, TX)

[Tumericmiraclewoman in reply to Alice-Ann]

I have been fighting. This is the 7th doctor. Im going be having IVIG treetment soon

[Alice-Ann in reply to Tumericmiraclewoman]

I really do hate to have to tell you that I have 21 doctors. I have had 4 neurologists! None of the neurologists understood much about what CMT really was, although they all swore that they knew!!! I have found out so much from these blogs of what can I expect, and sometimes something that I might try to help myself. You do need to make certain that you do have CMT, so that the doctors at least will know about what pain you may begin to have (and you will, eventually) and how to alleviate it, slowly with the least drugs.

This disease will never go away in my lifetime, but they are beginning Research on this problem now. It takes money, and our Government seems to be squandering our needed monies for health research in other areas.

If you do have CMT, begin to look around your home and begin to fix it for someone that may have to have a wheelchair, or get rid of throw rugs to fall on, and make certain that your bathroom will be okay for you if you have trouble walking. I did over my bathroom several years before I needed to do so and am so glad that I did. This disease needs to have planning ahead of it's take over.

Hope this all helps a tiny bit.

Hugs,

Alice-Ann(80 year old who thinks she's 60!)

[Ilsesmi in reply to Alice-Ann]

I totally agree. This disease (if you have cmt) is not going away so make it as comfortable as possible for you to live with it. I’m walking with a crutch and that keeps me from falling so much. My lower leg and arm muscles have deteriorating alot over the years. I also had a lot of surgery on my feet and ankles to stabilize them

[Alice-Ann in reply to Ilsesmi]

Hi Ilsesmi:

I have just begun my first epistle to Tumericmiraclewoman, hope it helps, but first she must find out what she has. You can't help with an illness if you are not certain of what you really have. I get so mad at all of these doctors. I keep forgetting that they are "JUST STILL PRACTICING!"

As to you and your crutch. I have used a crutch, but was too exhausted after going very far, so changed to a walker. I raised the walker higher than need be and used it for balance as well as perambulating forward. It collapses and it makes things easier when getting up from tables at restaurants. Never sit in the bankheads, always sit at a table with a chair with arms, if possible. Push up with your arms OR to get up another way, see how sturdy the table is. Place one hand on the table and one on the chair seat behind you and push with both hands at the same time. Practice at home. Sometimes I ask the people I'm with to hold the table. I do the same thing with my walker sometimes. (There is a four pronged cane.) Check garage sales or the paper for used medical equipment as they are cheaper this way and can all be adjusted. I think you call them jumble sales or junk sales. Don't be proud to ask. Afterall, we all have soap and water!!!!!

I have two newly replaced knees, weak ankles, bad balance, but finally no pain when walking, but can't walk very far as my COPD kicks in. My right leg can still drive the car, so when I get to my destination, I just grab my walker and am ready to go into the restaurant. I always tell people that I don't do stairs and need to be able to have valet parking or they can let me out close to the restaurant. My friends always think about this for me, first! Yours will, too, if they care about you.

I am 80 and I work on my attitude all the time, which my friends commend me for. I refuse to give up, as if I do, I would lose my friends and most of my life's fun and happiness. That's a bummer that I don't wish to take on. We are all here for a reason. Look at the things we can do on this blog alone!! These people here have helped me so much and I thank them all so much. I will help when and where I can, or just listen, because we can all do that, and some people just need to talk to people that care or share what we are all going through. Life was never promised to be easy, but we can all appreciate the small helpful things we discover together.

Helping someone else seems to help me, too!! CMT is no one's fault, just something for which to build character, and boy am I a character and ready to laugh.

Hugs,

Alice-Ann

[Ilsesmi in reply to Alice-Ann]

Thank you Alice-Ann your positive outlook gives me hope. Some days when the pain gets worse I’ll think about what you said and try to be positive like you

[Tumericmiraclewoman]

Thanks. I have already started on my home. I do not have extra money to do any needed upgrades. I hate not used rugs since February. With Medicaid i can not go to any doctor I want. I am taking tumeric for inflamation,cymbalta for nerve pain and balcofin as needed for spasms. I have to call tge doctor today and see what else we can do. If I have cidp coricosteroids will help. I have yet to recieve any.

[Alice-Ann]

Bless your heart. You have a great attitude. Don't let anyone get in your way. While you are doing a few things in your home, you must remember that you need to learn how to put yourself and your health first without being too bitchy. Back-up yourself as much as you can by research which is much easier with computers, now. Everyone on these blogs will help, I'm sure as most of us have looked for doctors that could help us for years to no avail. If you do your research, when you do see your doctors, you can ask for these things. They will agree most of the time, AS THEY WILL NOT KNOW WHAT MAY OR MAY NOT WORK.

FIRST of all though, you must stop messing around and have the tests you need to see if you really do have CMT. (like nerve volacity test and blood tests, non of which will kill you; although the nerve velocity test will make you feel like you sticking your finger in an electric outlet. This shows which nerves are being affected the time.) Like Ilsesmi, I have never heard of a grey area in a CMT or any other M.D. test, but I certainly only know about me!)- that's enough!!

I, personally would ask the doctor why she thinks that you have CIDP instead of CMT? They are related in some way just by the names of the mylin in both. You may be feeling better in the evenings depending on which medicine is wearing off, so one of your medicines may be too strong. Ask your doctor about playing with the dosages, and which one would be okay to do this with. I do this all the time! Your doctor, to me, is wrong about CMT only showing up in early childhood. Mine did NOT. My Mother found out that she had it when she was 80 and at the time I was 50. The doctor told me ,at the time, that I would have it, soon, as I had very high arches, curled toes, bottled shaped large legs, weak ankles and knees all my life, but nothing else presented itself for me until I was a little over 70, and I am now 80. My Mother died at 94 unable to walk with none of my millions of problems(like heart, COPD, kidneys, itching, or deafness)! She, also gave up, which we all must NOT do. I, also, did all sports: horseback, scuba, skiing, roller and ice skating, ballroom dancing and was on the swim team. My Mother played bridge, sewed, went antiquing and talked on the phone! Very different lives. I think this all goes into our beings, but that's just a guess. I have since had two new knees put in, so I feel like the bionic woman, but tire very quickly. At least I no longer have pain in my knees. The bad pain for me comes from the nerves dying in my legs and ankles and feet for now.

SECONDLY: I take 60mg. of CYMBALTA every a.m. to relax these nerves. I used to take Gabapenton 300mg (4 of them) for pain which left me groggy the next a.m. (I might play with this dosage throughout the day, if you are having pain)- These two drugs should help with any pain you have, which by the way comes and goes like you have been shot and mine lasts for about a minute, and is gone to return when it decides to do. I guess this means another nerve has died from the lack of having the mylin covering dying which protected the nerve. The nerve is now dying from the lack of its protective mylin shield which the shield is no longer being fed by the dying capillaries. It's all a chain reaction caused by several DNA screw-ups when you are born. These screw-up can come from one or both of your parents or way down the line in your ancestral history.

FIRST, FIRST, FIRST; GET THE RIGHT TESTS!!!!!!! More later.

[Tumericmiraclewoman]

Thank you i enjoy talking with you. If you want to email mr directly it is [e-mail]

If not i understand. I have had 3 nerve volosity test. It does sound like i could have a form of cmt. I have all the symptoms. High arches and such. Im also on 60 milagrams of cymbalta. I never thought to take it in the morning. I should try that and see if it helps me more during the day. I will ask my doctor what will help medicine wise. Maybe i have cmt and this nueromuscular doctor is too green yet to know that any form of cmt can dtart at any age. However, maybe she just wants to make sure before going with cmt. Because treatment fot cidp can let a person go into remision. I thank you all so much for all your advice

[Ilsesmi in reply to Tumericmiraclewoman]

Hi Tumericmiraclewoman. It is imperative to see a neurologist and being tested for CMT. They will be able to see which type of cmt you have

[Tumericmiraclewoman in reply to Ilsesmi]

I have seen many nuerologist. And had 2 genetic testing and 3 nerve volocity test and a spinal tap

[Alice-Ann]

Good Lord, surely your Dr. can read the tests which should show something. Have you had blood tests as well? There are no grey areas that I've ever heard of with these tests, but I'm no Dr. Can these tests be seen by another Dr.? Why hasn't she scheduled the

I believe what Ilsesmi says as well. Get a better Dr., if possible, OR be very nice and ask your present Dr. when you see her IF she has someone that might be working on peripheral neuropathy or diseases that are inherited like CMT which of course she knows is a form of Muscular Dystrophy? That's more of a backdoor approach, but it can't hurt. NO one really knows how to treat us, yet. We are all lab rats, but I am trying to help myself. ALL doctors feel like drugs will help everything, but they won't. Why is she dragging her feet over giving you the test for cidp? Tell her you need to know what you have so that if it is cidp, you can start on whatever may help you. If not, at least you can begin with something else to keep you feeling better! There seem to be at least 2 ways to help you, and what is she doing to help you right now? Cry, if you have to do so. With a man doctor this always works. If you do cry just a little she will know that you are frustrated and this is all ruining your life. This is a new approach for her to see!!! Sometimes this will work. All doctors feel that they must help in some way, and you have told her how. Whomever you make the appointment with on the phone, cry and tell them that your life is terrible and you need to have some relief. These are all the tricks that I've ever used. You are going to get some relief; either in knowledge/information or physically.

I know I sound pretty nasty, but whatever works!!!!

You are 66 and still have a lot of life ahead of you!!! Start fighting (like a lady)! Have a plan. Know what you need to say. You can always ask you if you might tell her , "I know you are trying to help her and you appreciate what she is trying to do, but you are almost crazy not doing anything about it and just wanting to stop this problem of_____________ if we can or at least let me be able to have the rest of my life in some form of comfort. Blah, blah, blah. Just push nicely!!! You can do it if you plan ahead. This is a way of fighting. I ALWAYS tell my Daughter to begin a sentence with I KNOW YOU WILL UNDERSTAND WHEN I TELL YOU______________________. She has a PhD and teaches College and says that it almost always works!!!!! You make the other person feel like they need to be understanding even before you say anything. I will use your email from now on -

Hugs, love and blessings,

Alice-Ann

([e-mail])

[Tumericmiraclewoman]

Well i have had the spinal tap and that did not reveal anything. I am concerned about the grey area myself. I feel there is something there. I have had many blood test. Allot of them by several drs. I am loving this advice though. I have been frustrated with all the doctors and concidering in going out of state. Maybe to Mexico. At least then i will be given medicine to try and help. I do not know why i have not yet been given a dose of coteosteroids. Have any of you been given that medicine?

[Tumericmiraclewoman]

Oh and i am 42. I have recently lost my job because my boss did not like the way my health was deteriating. I called my nuerologist that is closer. I had to leave a message. I need a doctors note saying i can drive a bus. Then i can get my job back. So far, driving is not a problem. I need that extra bit of money...