Winkin' Blinkin' and nod.

So I had another neuro appointment today. I guess just a check up. were are going to do IVSM at home, Yay I don't have to search for someone to go with me to the doctor an hour and a half away 3 times a week.

Anyway I told her about the tightness in my diaphragm/top of ab's and she said it was most likely due to a lesion on the spinal cord. Last time I had an MRI they didn't say anything about a lesion in my spinal cord. Only a couple in my brain, perhaps I have another lesion since December? I've only been on DMD's since the 14th of Jan. Anyone know any more about this?

Also she noticed that my left eye (the one I have had ON and doesn't dilate like it should) It either blinks more frequently or winks alot when I'm excited. My boyfriend was with me and she asked him if he noticed this. and he said I've done it practically ever since I met him (a bit longer than a year) long before I ever thought I had any problems (Oct-Nov).

Now, I wonder how many people thought I was weird or had a nervous tick...I might be able to fool an experienced gambler or it might be a certain tell. lol.

[Sumanadevii]

I have the tightness in my diaphragm area.  For me I feel it coming on...I begin to have trouble swallowing ..and while this sounds gross, if I sniff nothing moves.  It is like the entire area stops working...even my breathing.  I have been assured my diaphragm won't stop working but it is frightening to me.  My neuro has run many tests to be sure it is the MS.  Her reasoning is, it could be other things and we can't blame everything on MS.  Once proven it is MS, she treats it.  I like how she goes about it and feel secure under her care.

I imagine that is why she is treating you with IVSM.  I do it two or three times per month depending on what develops and how severe things become.  I do well on two but three always sends me into a mess!!!!  It takes longer for me to recover from three.  I hope things go well for you.

[sllowe]

You should definitely play your hand @ cards, hahah

I've had the tightening and do have spinal lesion - hope you don't have anything new, but perhaps something was missed on the 1st scan. That can definitely happen. Your doc sounds as if it's a possibility.

Which dmd did you start? Sorry I'm not remembering. Takes a little while to be protected once you start...

-shell

[HoustonDogLove]

I started Copaxone on the 14th of Jan.
Sllowe- where is you spinal lesion do you know? Cervical or lower.

She offered to do hospice come for IVSM but I'm worried Insurance will leave me with a big bill. I paid 238 for gram/day for 3 days. I don't know maybe it will be cheaper to go in even thought it's an hour and a half away. Someone just offered to help take me. What is yall's experience.

[COBOB]

Call you insurance company.  My home infusion was less expensive that the hospital infusion center.  The nurse comes and starts the IV and teaches you how to do the first day.  You do the rest.

Bob

[sllowe]

HoustonDLove,

It's my largest, and in my c-spine it's 11mm x 7 or something like that, lol.

Can you call the hospice facility and ask if they cover the difference of what the insurance will not pay? You never know.....I know ambulance services do that in my area. If you can't do the hour and 1/2 drive then it's def. worth the call.

[HoustonDogLove]

Very interesting! thanks for all the info, I went on Wednesday and I haven't heard anything yet....hopefully Monday.

[jensequitur]

I have several spinal lesions - I have problems with tightness all up and down my torso.

[HoustonDogLove]

I thought my neuro might give me something for it but they didn't. I guess she is hoping that the IVSM help,s but that is a long wait.

[HoustonDogLove]

I'm also wondering if it is actually tight like a cramp, or just feels tight. It wouldn't  be so bad  if I am carving a 6-pack while going through this.
On a side note, I am thinking about trying to lose weight but wondering if since this is an auto immune disease  is it  more likely that later on I could  get sick somehow that it's hard for me to keep weight on. Or could it  go the other way where it will be more difficult for me to exercise and will slowly gain weight. I should probably start a new topic for this.