An Update On Me, Saw New Neurologist Today
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February 6, 2007 at 6:36 pm
Hello,
Just a little about me first. I am no longer progressing, I and my doctor felt confident about that, so three years ago, all treatments for CIDP were stopped. I have shown no signs of relapsing. Since I no longer needed treatments and since my neurologist moved to another state, I stopped seeing one. For the past year, there have been very few improvements, which ripped apart my motivation and caused me to give up on exercises and I should be capable of improving since you heal when you are no longer progressing. And I know that I have improved ALOT, it just comes so slow. SOOOOOOOOOOOO, I grabbed ahold of myself and shook myself and told myself “get re-estabilished with a neurologist” because maybe I need something like a re-boot to get me going again. TODAY I WENT TO SEE A NEW NEUROLOGIST associated with the near-by teaching hospital. I liked him, he was very easy for me to talk to. OKAY, now the news about what he said. I was never told this by my previous neurologist, or any other neurologist, but NEW NEUROLOGIST things I also have CMT and I agreed to have bloodwork done to determine this. Can anyone tell me about CMT? NEW NEUROLOGIST wants me to go back on IVIG once a month for a short time to find out if it will push me forward again. I did agree to that, but he did say if I was satisfied with how I now am, that I don’t have to do it. I’ll try it because of course I want to get better then what I am. Lastly, NEW NEUROLOGIST said I have foot drop, which I know very little about. How would “I” know whether I do.FEEDBACK would really help me!
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February 6, 2007 at 9:16 pm
Liz,
Abby was first diagnosed with CMT before they really figured things out. It is heretary(runs in families). Send me your phone number …again…my desk is a mess…going tback to neurologists tommorrow.
Cindy -
February 6, 2007 at 10:45 pm
Liz,
I was incorrectly diagnosed with Charcot-Marie Toothe (CMT) as well, early in my attempt for diagnosis. CMT is hereditary, and there is a genetic marker they can find. CMT is also usually progressive. I might doubt it for you as you have been relatively stable for several years. CMT is not nearly as rare as CIDP, many neuro’s have seen more cases of it.
Symptoms are similar to CIDP, but they also stress high arches. The tendons in the feet draw up and the arch gets progressively higher, developing a “claw foot” or “claw hands” depending on how severe and whether it is feet or hands. It is also not necessarily symmetrical. It can affect one side more than the other.
Remain skeptical. The genetic test is proof. Does it run in your family? Do you have relatives that have high painful arches? Like I say, if they run the genetic test, that would be proof.
Foot drop is the condition caused by weakening muscles in the calf and ankle. You are not able to keep your foot cocked up, and it falls down. When you are walking, you have to pick up your foot higher and “flop” it down because you can’t keep it cocked up to make a good step.
You would know if you have that. That can be a result of CIDP, so I wouldn’t be suprised. Normally foot drop is dealt with using AFO’s to help hold up the feet. You used to use AFO’s didn’t you? (Ankle Foot Orthotics)
Keep your chin up, I probably wouldn’t stress about the CMT. And the foot drop you have already been dealing with. It will take time for this neuro to get used to you and for you to get used to him/her. These things may prove out to be one way or another, hang in there.
Dick S
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February 6, 2007 at 10:55 pm
Liz,
I forgot to ask…. Did the new neuro get your old records? That would be most helpful for you. It would keep him from doing things that might have already been done.
Remember, he wants to help. And if he sees no treatment for a while, he might think that additional treatment might make a difference. If your CIDP has stopped, you are left with residuals. IVIG helps stop an attack in progress. You might get a temporary “upper” from it, but I would be curious about long term help from it.
Make sure he reviews your old files. It might help him help you.
I don’t want to throw water on anything for you. I really hope it helps. I also want you to be careful as you proceed. I am sure he only wants to help, but if your leg isn’t broken, you don’t need a cast.
Your friend,
Dick S -
February 6, 2007 at 10:55 pm
Liz,
Congratulations for taking that step – sounds like you’re more motivated than you give yourself credit for!
Office Visit: $ 230
IVIG : $ 13000
Neuro you can talk to: priceless.Best wishes, and keep up those big, little improvements.
cd -
February 6, 2007 at 11:31 pm
First off, I do not believe that you have CMT, as I was tested for that right away. I am sure you were in the past as well. It is progressive, many of the people on the peripheral neuropathy forum have it, & deteriorate fairly rapidly. You would not have remained stable if you did indeed have CMT. Secondly, just my opinion, but at this point I think IVIG would be a waste of time. You always said that you felt it was like water dripping into you (I felt the same way, & I was right.) After so many years, especially over 3 years of being stable, what could it possibly do for you now?
I think you have always had the foot drop, that is why you wear high top boots all day, so that your feet don’t point downwards. Same concept as wearing AFOs really. I guess after almost 5 years of studying this illness, I have come to the conclusion in both CIDP & GBS, that once the antibodies are completely arrested, or the syndrome goes into remission, that there is actually a “two year window of healing.” I never believed it before, when the chemo finally arrested my CIDP, as it was so exciting to finally be seeing so many improvements after 2 1/2 years. But I would have to admit to myself now, that I have not seen any more real improvements after those first two years. Little things maybe, mostly me relearning how to do old things.
Personally, I think at some point I just accepted my dx as well as my prognosis & have just moved on with my life. I do what I am physically capable of, eat right, take vitamins, attend water aerobics twice a week, etc. Gone are the days of skating, skiing, tennis, etc. but that is OK. I can still have a good life, even with my limitations from CIDP…
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February 6, 2007 at 11:56 pm
Hi again,
Just thought I’d add a few things. If a genetic test is bloodwork, then that is what I will be having done. I know of NO-ONE in the family, close or distant, who was diagnosed with CMT. There is a question about what is wrong with my mother because about four/five years ago my mother was having symptoms like numbness/burning red feet, pain, falls and a neurologist told her she had “a neuropathy”, she never had enough done to diagnose. Because of her age and other medical problems, she cannot go through the necessary tests. But, again, there is no known person in the family who has CMT. I do have very little or no forward movement in my feet, but I’m just not seeing a problem putting the foot down. I don’t think I have a drop foot, so even though one AFO was recommended one time, I felt that I didn’t need it.AND YES, ALL MY OLD RECORDS WERE GIVEN TO THE NEW NEUROLOGIST.
I’m willing to try going back on IVIG’s since the doctor agreed that I was doing well enough not to really need them. THEY MIGHT JUST GIVE ME A RE-BOOT.
Since this is a new neurologist who saw me for the first time, I’m thinking he might just be seeing things that aren’t there.
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February 7, 2007 at 12:19 am
Me Again,
I always think of things “after the fact” and now I’m thinking that I’ll hold off on going back to short term IVIG’s. I am starting physical therapy again on Thursday. I found a really great clinic, that will challenge me because they have ALOT of exercise machines AND they have a POOL. It is true that my motivation was ripped apart for almost a year, due to STRESS and FRUSTRATION which causes bouts of depression, my mother’s declining health and trying to be one of her caregivers, problems with the two other caregivers she has (we lost one, but now use an agency to provide), BIG problems arranging transportation for myself.I want to see if the physical therapy will move me forward again because I AM STABLE, I SHOW NO SIGN OF RELAPSE OR PROGRESSION. I think I just allowed myself to get very much out of shape.
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February 7, 2007 at 9:15 am
I’m back again and letting myself get more confused. Does genetic testing mean that my mother and/or my brother would have to be tested???? I just will not have it done if I have to tell family and it involves them. I could explain, but so far no-one has ever understood why I don’t want family to know.
My mind will go back in time sometimes and when I was at the doctor’s office, I told him that even when I was healthy (before CIDP), I could not “walk a line” (I’d fail a drunk test, he he he), you know, when you have to place one foot in front of the other and walk a straight line. A neurological problem??? I don’t think so, I still don’t because this was the “ONLY” thing wrong. I was never an athletic person, “COUCH POTATO HERE!” and isn’t it normal for some people to just be clumsy. I could run, I never tripped over my feet, etc., etc.
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February 7, 2007 at 9:35 am
Liz,
The genetic testing i believe is just your blood work if they are looking for a marker. I may be wrong as Tommy and I both met with and had blood work when Mayo was trying to find out what Abby had. Tommy’s neurologist knew it wasn’t CMT because he looked at both Tommy and I feet. The high arch keeping changing. I know there is a website and association, I’ll see if I can find info. for you.
Cindy -
February 7, 2007 at 10:11 am
Liz,
Go for the rehab, it will make you feel better about yourself & you will love being in the water. I do get worn out the days I have water aerobics, but I feel I am getting wonderful range of motion as well as regular exercise. It has also helped me in my weight loss program, so I feel better about myself in that respect as well. I have also made a lot of new friends in my swimming class, as we socialize in the hot tub before & after. I think I would be depressed if I did not having this outlet, especially since we have been in the deep freeze for awhile now. Cabin fever is starting to set in around here! -
February 7, 2007 at 2:14 pm
Hi Liz,
You could send Jethro a private message as he has CMT and can give you tons of answers that might help you in making any decisions.
Good Luck Liz.
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February 7, 2007 at 4:43 pm
Hi Again,
I’ll contact Jethro “IF” and “WHEN” I find out that I do have CMT, but since it’s heriditary (sp.?) I don’t think I do. I know of NO-ONE in the family, certainly not close nor distant that has it. The new neurologist “keyed” in on my feet because the toes on my right foot curl just a little and if I do have foot drop, as far as I’m concerned, it’s not so bad I need AFO’s.There is no CMT in the family, but there are neurological disorders.
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February 7, 2007 at 5:52 pm
Hello Liz, Sounds like we are both in about the same boat only in reverse. Today I was “thrown out”of PT. I loved both my therapists and will miss them alot. BUT we have done as much as possible until I get some more nerves in my lower legs, ankles, and feet. My neurologist is gone from our hospital and next week I travel about 85 miles to a new one. I hate starting over after about a year, but have no choice. I do have very bad foot drop in both feet. I wear afo’s as long as I can each day as they become very uncomfortable. Just be very careful as my drop foot turning under me caused a fall back in June and I broke my ankle on both sides. Set me back about 2 months. I am now walking fairly well with my walker, still very shakey on a cane. I use my power chair alot as I never, never try walking without the AFO’s. I also have a few very numb fingers which makes typing a real joy. I hope we both do well with our new docs and do try the therapy, I will miss mine, but promised I would do all the work here at home and walking the malls. They said water is the best, but I dont like pools and turned that down, so thats why I am done. Best of luck and try not to worry–us old gals are tough….. Regina
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