I want to exceptional ms-patient! (but who doesn't?)

[veronica]

Hi
Just came back from my neuro,feeling like crying and then going eternal. He said my shaking will never end :eek: and if eating continues to be so bad ('cause of the shaking) we should consider IV-feeding. Good lord..
After an hour of deep depression I thought I am going to be one of them, who strengthen their legs, do diets and get OUT of their wheelchairs...!
Any of you here??

[lady_express_44]

I'm sorry Veronica. :(

It was THAT exact day, whereby my neuro told me my symptoms (including choking on food, or even my own saliva) were PERMANENT . . . that I got mad. Grrrrr . . . I didn't go through all those years of schooling/management for naught :mad:, so it became my personal goal to find a solution . . . and if I did . . . to communicate it to others. That is the reason I am on these boards, in fact.

I researched until I discovered people talking about a drug that MAY help me, and then I fought long and hard to obtain the rx. The fight was all that kept me going for months.

I started on LDN 2 yrs ago, and my life changed from that day forward. I KNOW it doesn't work as well for everyone :(, but it HAS the potential to work very well for some.

Don't be discouraged just yet. Keep searching YOUR options.

((veronica))

Cherie

[karlee]

Veronica,

I'm sorry about the bad news. We don't know any of your ms history. Are the tremors your main symptom?

[agate]

Hi veronica,
karlee is right--more information would be helpful here.

Your neuro deserves a tactlessness award.

No neuro has a crystal ball (so far as I know). Telling you your shaking will "never" end was behaving as if he was a god, with supernatural powers of predicting the future. I won't buy that from doctors. And you shouldn't either.

You could ask him how he can be so sure it will "never" end. Or you could shop around for a more helpful neuro.

I'm not sure what question you're asking in your post. Do you want to know if anyone with MS ever gets out of a wheelchair?

Are you on one of the ABCR drugs?

[KLD]

Are you sure you want to keep this neurologist?

Did he suggest you see an OT to might be able to help you with learning techniques to control your tremors? For example, wrist weights help a lot of people with MS reduce their intention tremors.

Did he suggest medications (there are several) that can sometimes help tremors?

Just giving up is not what you need...either from your physician or for yourself.

[Abby2006]

choking on food You mean this becomes a problem ALSO.

I've had a day like that today, found myslf crying and feeling sorry for myself, that doesn't happen often, I just keep going but for some reason the engine is stopping, I feel like one of thoe tops we had as kids (you'd pump them and they would spin and then fall over)

Abby

[Abby2006]

thought I am going to be one of them, who strengthen their legs, do diets and get OUT of their wheelchairs...!
Any of you here??


Think I've been to them all

Abby

[veronica]

:( Hi
and thanks for the answers. I am still depressed, but a bit less...
I was diagnosed in 1992, had all kinds of (mainly) pins and needles, bands around my legs and stomach, but in may 2006 I was declared secondary progressive. Have no balance at all and therefore I cannot walk and started shaking eversince.:(
sigh...
veronica

[fahrmar]

Hi
Just came back from my neuro,feeling like crying and then going eternal. He said my shaking will never end :eek: and if eating continues to be so bad ('cause of the shaking) we should consider IV-feeding. Good lord..
After an hour of deep depression I thought I am going to be one of them, who strengthen their legs, do diets and get OUT of their wheelchairs...!
Any of you here??

My neuro did a 180 when I dared to ask about chronis lyme disease, and what additional testing we could do. He got pissed, and kept me at arms length ever since. A fwe weeks ago, I saw him and he declared "Second event in time and space, let's do a brain MRI" I called after waiting 5 days to see is he'd read the results, he had, no new appointment scheduled even though he specified that my new sx were "MS". I called again and asked about a full-spine MRI, and no response whatsoever! So, I scheduled with my PCP. Saw him yesterday, should have the FS MRI within a week, he's considering LDN, but wants to do more investigation first, and offered to make a referral to a new neuro. We MUST be proactive. Yes, there are things we can do. Good luck, and God love you! *kiss*

[0357]

Well, I was one of the fortunate ones but just because I was misdiagnosed. Sorry I don't have a happier reason.

I had acute attacks from '92 through '96. Get past one with ACTH then start building towards the next. With Progressive Relapsing MS a 'few' and remissions which I had.

At the end of the 4 years I was 9.5 on the Kurtzke Scale. After the ACTH arrived in the mail...after 2 days worth of shots...my husband and I went out for dessert with me using my cane and not in my w/c.

It had been nearly 6 to 8 months since I had been out of the house because of fatigue, sensitive to noise, motion, etc.--even with using a w/c. I didn't have the hand coordination to operate a w/c on my own nor the energy to do so; my husband had to push me ever since I went into a w/c.

As I mentioned my MS progressed very quickly...

I haven't had an attack since Sept. '96--Two neuros now say Relapse Remitting is what I started out as. Now I'm Secondary Progressive and have been for a number of years.

Hang in there, take one day at a time, concentrate on what you can do instead of what you can no longer do, ask for help when you need it and myself, I always tried to say thanks for those who helped me; very important to do IMO. The whole family is affected when someone has MS.

Sorry you have the symptom of shaking...sigh. Hugs--0357

[fahrmar]

Hang in there, take one day at a time, concentrate on what you can do instead of what you can no longer do, ask for help when you need it and myself, I always tried to say thanks for those who helped me; very important to do IMO. The whole family is affected when someone has MS.

Sorry you have the symptom of shaking...sigh. Hugs--0357


Thank you for the reminder to be grateful for what we (I) do still have, and not get consumed by what's been lost. I needed to hear that. (I wish there were a kiss smile face)