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Old 06-10-2006, 09:18 AM   #1
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Feelbad

I took your advice and the neuro did do a MRI of the BRAIN and of the C-Spine.Brain MRI is conclusive for MS and C-Spine is basically normal.

My Dr calls it primary progressive,progressing and a slow rate which is great news.

They have upped the zanaflex ,baclofen maxed now on daily doses.Its knocked me for a loop and not providing much releif.Once my body has adjusted tehy are going to start oxycotin,through neuro's office.He is not hip on the pain management clinic at this point.His worse fear is them changing my current meds.

I have kept my options open and will still consider pain management,if his coarse of treatment don't help.

With Primary Progressive MS ,the four meds for MS will not work ,so we are going to try to treat the symptoms as they come.I have tried tricyclic antidepresents for the neuropathic pain and have had allergic reaction to them.

I guess time will tell.

Toni

 
Old 06-11-2006, 07:24 AM   #2
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Re: Feelbad

sorry to hear they actually found something but very glad you had the tests done.i do feel for ya finding THAT out tho,what is their overall prognosis for you at this time?just how bad IS your pain right now and where again is it actually located.my mind does not remeber too well these days.at least now you have a definite dx to work with and try appropriate treatments geared specifically for that condition,and that does help you alot.please keep me posted,K?good luck and i hope things do not progress too rapidly forya,hang in there Toni,Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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Old 06-11-2006, 09:14 AM   #3
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Re: Feelbad

Marcia,

The overall prognosis is time will tell,its not real specific.The pain extends from the central nervous system and usually in my legs and biceps.I occasionally have it in the spine.On any given day its always between a 6-8 level.The way I understand it is the myelin coating on the nerves is being attacked by my own body and the nerves are short circuiting and the muscles are becoming angry and inflamed,the brain can't disguinsh between receptive and non-receptive pain.So the pain is constant.I guess what I'm feeling is sort of like neuropathy,but this starts inside the central nervous system,neuropathy is outside the spinal canal.

Toni

 
Old 06-12-2006, 07:21 AM   #4
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Re: Feelbad

toni,from just what I know from a couple of friends who suffer with this,one of them is taking percocet for BT type pain but her main pain med is actually neurontin and the other is strictly taking methadone.they both seem to be okay with their med plans.i guess like everything else,its an individual thing and alot of trial and error.i hope you can find that right combo of meds that will give you at least some good relief from your pain.and your explanation of what MS is really does sound right on from what I know of it.so sorry you have been Dxed with this tho.hang in there Toni,i do wish you all the best in this.Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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