M.S. specialist

[tortis]

Hi everyone, I am going to see a M.S. specialist next mon after waiting since Aug. My neurologist has run out of options for me. My immune system is insane, such as fever blisters 11 months in a row and shingles in my mouthand paronychia(nail bed infection) all at the same time and actually there are more but I think you get my drift.
My Dr. wanted me to go on Tysabri even though I am pml positive but now with so many immune system problems she wants another set of eyes to look me over but meanwhile I have been going down hill very fast and not able to tolerate any of the other band aids they call treatments.
I know a lot of you have seen specialists so what questions should I ask and what should I be wary of????
Thanks
PEACE
Tortis

[JerryD]

Hi tortis,
I spent 5 years trying to get an actual MS specialist. If you have not seen an MS specialist ask him or her what it is that gives them that 'specialist' designation. Ask about testing other than MRI and LP. There are cognitive tests and visual tests. And discuss all of the drugs available for slowing progression and pain and mobility etc. Ask how many MS patients he/she treats. If you have confidence with this doctor, ask if he/she is accepting new patients. Good luck

[tortis]

Monday 16th.

Well, I did it again, I do not think my brain works at all any more . My post should have read that I was seeing the specialist on Monday the 16th not next Monday. Just feels like I can not do anything right any more. I just feel like the MonSter has gotten the upper hand and all my other ailments are making it even worse. I hate this ugly disease and all their money making treatments that make me sicker than I already am. Sorry about the negative but just the thought that I have to drive 5 hours one way just to see the specialist is really depressing me. Urinary and bowel problems mean probably stopping every 15 to 30 minutes and I will probably be very sick for a long time after after we get home. Since 1997 not one treatment has slowed this torture down,and cannot take hardly any of the pain meds. Sorry about the rant, good thing I can only finger type or this would have been even longer.

Peace

Tortis

[tortis]

update seen the M.S speacialist

Hi everyone, I finally got to see the specialist. Well it looks like I will be going on tysabri as long as my index does not come back to high and if I can get it through money wise, even though I am PML positive. He and my neurologist feel I am just progressing to fast.
He also wants me to start taking tegretol and nortriptyline which I am very hesitant to take. I have reacted very bad to almost every med. I have ever tried and I know these from past experiences.

I think, I will try the tegretol as the specialist thinks that the 3 year headache from hell with burning face and spike in right eye is a different form of TN which I have had many times over the years. Tegretol made me so tired to a point of pin in a balloon feeling. I am worried that it will make it so I will not be able to take my valium which is the only thing that controls my C.N.S. dizziness and my spasms a little bit. Can not take baclofen works great but locks urinary and bowels up completely. Of course there was not enough time to discuss the other 100 questions I had. Although he spent longer than I expected for just a consultation. There is a lot more but I can only finger type so this took really long and I am wiped out. I HATE THIS DISEASE!!!!!!

PEACE

Tortis

[pennstater]

Glad the appointment went well. I hope you can start on Tysabri and progression sloes, and have no problems with the other meds.

Good luck. Keep us up to date.

[laurasari]

Of all the drugs I have been on and I have been on many. I had 30 infusions of Tysabri and I liked Tysabri best. I have been on all 3 oral drugs Copaxone and Rebif I wish I could go back on Tysabri.
Good luck to you
Laurie

[tortis]

encouragement

Hi, Jerry, Pennstater and Laurasari, thanks for the encouragement and suggestions. I do appreciate the responses.
PEACE

Tortis

[Diamond57]

Best of Luck! Sounds like your'e suffering real bad. Where did you go to see an MS Specialist????

Your neighbor.....
Susie Q

I go to Marinette, WI

[tortis]

MS Specialisat

Hi Susie, I had to drive al the way down to Madison Wis. to the University of Wisconsin. This was just for a consultation and his opinion on what I should do. He will not be my neurologist full time but he said my dr. could call him for any help in the future. Will have to go a step at a time and see what happens.

Hopefully somebody will subdue the MonSter soon so we can live with less pain.

Smile it makes people wonder what you have been up to!

PEACE
Tortis

[Mamabug]

After five years of seeing a neurologist whom I really liked, who was 30 minutes from my home, I switched to an MS Specialist who is 3 hours away, due to MS that was not under very good control, and fairly a-typical symptoms.

I'm so glad I made the switch. Due to my unusual symptoms, she questioned the MS dx, but confirmed it, following some testing. She also switched my from Betaseron to Copaxone, because the Betaseron was not very effective for me.

She is much more knowledgeable about MS than he was, even though he was one of the best neurologists around here. It is worth the trip, twice a year, to see her.

Glad that you are also having success with the switch.

[rdmc]

He also wants me to start taking tegretol and nortriptyline which I am very hesitant to take. I have reacted very bad to almost every med. I have ever tried and I know these from past experiences.

I think, I will try the tegretol as the specialist thinks that the 3 year headache from hell with burning face and spike in right eye is a different form of TN which I have had many times over the years. Tegretol made me so tired to a point of pin in a balloon feeling.
Tortis

Glad you were please with the specialist. Have you tried nortriptyline? I know every person's different, and each has different reactions to meds. But I've tried all the neuropathic pain meds and the one that's caused the least side effects, and most relief is nortriptyline.

[JerryD]

I am glad to hear that you a pleased with the switch. You made the right choice, IMO. An MS specialist will understand the disease process and know what to do better than a general neurologist. I hope that you continue to have good luck with this doctor.