From MMN to ALS now MND/Autoimmune Disease

[deedee8611]

Hi Everyone,

Well I guess I'm one of those who they are not sure what I have..They now say I have a motor neuron disease and autoimmune disease but not sure what one yet..I was told I had MMN for 2 yrs and then in June of this year they changed it to ALS..They stopped my infusions ..I even went to the Mayo for a week.Was really disappointed in the drs. there..They had it in their minds that it was ALS and would not listen to me about how the IVIG's had helped me..So when I got back I went to the MINDs..After 3 months of being off the infusions I could barely use my right hand and could not open my fingers straight..Thanks to the drs. at the MIND's who started them up again I can now open my fingers almost all the way and use it more too..The drs. from the MINDS went over my blood work from the Mayo and noticed that my sed rate was very high and a few other things wrong with it..The dr. ran a thyroid antibody test and that was way off too..Now they are putting ALS at the bottom of the list and looking for what is causing all this stuff..
They have just started me on cellcept but not sure if I will continue with it..I heard the only benefit I might get is a little more use of the hand and maybe stop this from spreading for awhile..I have had this for 5 yrs. now..I don't like the side effects of the cellcept..I was told it could cause cancer..Has anyone taken the drug with good results?? I guess my main point I am trying to get to is don't give up..If you think the drs. are wrong keep looking..This dr. even found conduction block where no others did..This may have been caused by a virus which affected the thyroid in return started the motor neuron disease..Just finished the thyroid test so will let you know what happens..I would welcome and input on the cellcept..I have read the postings on the cellcept but would welcome more info on it..
Thanks and a Merry Christmas and Happy New Year to everyone here..

deedee

[sdc]

Hello, deedee. I have been taking CellCept for about a month and a half, or so. Maybe it has been closer to two months now. I "think" it may be helping to some degree, but it has been nothing like the IVIG in my opinion. I have found that the IVIG works much better, in my case anyway. I found some info that states CellCept is slow acting, which I interpret as it taking a little while before it actually starts working effectively (if at all). So far, I haven't really noticed much of any side effects from it, either. I started off taking 1 gram per day. Now, I am doing 1.5 grams per day. If/when I ever get the g0d*am@ insurance company to reapprove me for an icreased dosage of IVIG again, I will stop taking the CellCept due to perceived complications from long-term use. The IVIG is supposedly much safer. About the only negative thing I have noticed so far about the CellCept is feeling a little dizzy every now and then, especially about an hour or so after taking it. I also think that it may be affecting my sleep pattern a little as well. Both of those are listed side effects of the drug by the way.

[deedee8611]

Hi sdc,

Thank you for responding..I get the IVIG every 2 weeks..We have decided we are not cutting that down cuz I lose to much when they do..I take 1 pill (250 mg) a day for a week. then 2 a day for a week until I get to 4 a day..Like you I don't like the side effects..My mother had breast cancer and this can cause cancer..The dr. told me it takes about 3 months for the cellcept to start woking..Have been talking to my family and they want me to stay off it..Only been on it a week..I agree with them..With my luck I would get the nasty side effects from it..besides they haven't really said what I have other than MND/Autoimmune disease..which one they haven't decided yet..Again thank you for your input and good luck with the insurance..Don't stop fighting them..

deedee

[starlight]

I am sorry to hear that you had such a bad experince at the Mayo clinic.
I am glad that you have started your IVIg again, hopefully you will see some improvement soon.
I am doing well, but have been incredibly busy lately between work, home and getting ready for the holidays.

Hang in there!!
Happy Holidays

Linna

[Mick05]

Deedee

I have read your posts in the old B.T. and the new(back on line) B.T. I had been entertaining thoughts of going the Mayo clinic for some time. Both my
local neuro and the U.C.L.A. neuro told me it would be a waste of time and money and they,the Mayo would DX me with the same thing. But, I have always felt it was a catch 22. What if they don't agree and DX you with ALS, then you're screwed with the insurance co. No more IVIg. After reading your disastrous episode, what I thought could happen did happen to you. You have put my dilemma of do I or do I not go to the Mayo clinic to rest. I am sorry this happened to you and thank you for all your posts. I am sorry so many have left this site, the posts have been invaluable to me in helping to understand the disease.

Mick

[deedee8611]

Hi Mick,

The only thing about the Mayo was they didn't listen to all I had to say..They had there mind made up it was ALS before I even seen the drs..Some have had good experience with the Mayo..As for the insurance they called me and asked me what the drs. at the Mayo said I had..I told them they were not sure..In medical records they state that it could be ALS but there is not one test to do that can prove that I have it..I was worried about it too..I started the cellcept and I think I feel the difference all ready..took it for 5 days and stopped..scared of the side effects but just started it up again..There is another person from the forum that went to mayo and really like it..It is really up to you if you want to go..
Still having thyroid checked out..have 3 nodules on thyroid..Well good luck in wherever decision you make..Merry Christmas to all and a better New Year for all of us..
deedee