sassy8
03-05-2008, 05:16 PM
I saw my nuero doc yesterday. Tell me if this sounds strange to you. I had told him about the two episodes of double vision and memory lost that I had had. So he set up this appointment.He Never mentioned a word about it. Then I told him how much my legs have been hurting and how stiff they are. I also told him that I have more tingling and that my feet and hands go to sleep alot. He said that wasn't a sign of ms. He also told me that my ms was in remission and that I didn't need my copaxone anymore. I told him that I also stumbled alot so my legs give out. Go figure. I haven't been able to have any recent MRI's because of having interstim surgery last summer. There's a metal piece in my back. I just feel like giving up at times
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zadie
03-05-2008, 05:45 PM
Get a new nuero ,very strange he would take you off dmd because you are in remisson.
MSNik
03-05-2008, 07:36 PM
Run far and fast from this guy! Theres absolutely NO WAY THAT ANYONE SHOULD TAKE YOU OFF COPAXONE FOR THAT REASON! The entire idea of taking DMDs is to keep the relapses at bay and stop new lesions (i.e. symtoms) from starting....sounds like the Copaxone is working for you.
You are obviously dealing with a neuro who is NOT an MS guy...lots of Neuros see MS patients, some also see Parkinsons, Migranes and Fibro patients...all of it is nerve related; however when you are dealing with someone who is obviously that ignorant to the perils of taking you off Copaxone, its time to look for a MS specilist to treat you! Especially since MRIs arent a part of your world anymore- you really need a doc who is more in tune with your symtoms...its going to be hard to manage MS without regular MRIS, but a good MS Specialist will have a much better handle on you then a regular Neuro.
I know there are great facilities in your area of the country...put a shout out looking for an MS guy who has a good rep!
good luck...and if you can, stay on your meds.
Nikki
You are obviously dealing with a neuro who is NOT an MS guy...lots of Neuros see MS patients, some also see Parkinsons, Migranes and Fibro patients...all of it is nerve related; however when you are dealing with someone who is obviously that ignorant to the perils of taking you off Copaxone, its time to look for a MS specilist to treat you! Especially since MRIs arent a part of your world anymore- you really need a doc who is more in tune with your symtoms...its going to be hard to manage MS without regular MRIS, but a good MS Specialist will have a much better handle on you then a regular Neuro.
I know there are great facilities in your area of the country...put a shout out looking for an MS guy who has a good rep!
good luck...and if you can, stay on your meds.
Nikki
limpster
03-06-2008, 10:27 AM
I agree with the other posters.....Run do not walk to your next neuro or better yet, if you can find an MS specialist in your area.
Your MS may be in remission but it's probably because of your injections.
I would certainly seek another opinion.
Good luck and keep us posted.;)
Your MS may be in remission but it's probably because of your injections.
I would certainly seek another opinion.
Good luck and keep us posted.;)
Snoopy61
03-06-2008, 10:36 AM
Sassy, it's time for a new neuro hopefully one who has more understanding of MS.
There are meds that can help with some of the symptoms (symptom management meds) you are mentioning. Taking you off of a DMD just because you are in remission is not standard practice. If you want to be on a DMD remission or not you have the right.
Limpster, remission happens with or without the DMDs. The DMDs are supposed to slow down progression and hopefully decrease the amount and severity of relapses however, the DMDs do not work for everyone.
Other than meds - Stiffness can be helped with stretching, exercise, physical therapy(PT) and the aching can be helped with heat.
There are meds that can help with some of the symptoms (symptom management meds) you are mentioning. Taking you off of a DMD just because you are in remission is not standard practice. If you want to be on a DMD remission or not you have the right.
Limpster, remission happens with or without the DMDs. The DMDs are supposed to slow down progression and hopefully decrease the amount and severity of relapses however, the DMDs do not work for everyone.
Other than meds - Stiffness can be helped with stretching, exercise, physical therapy(PT) and the aching can be helped with heat.
sassy8
03-06-2008, 01:04 PM
thanks for all your responses. I will be looking for a new ms doc. He really confused me. I have done enough research and have read alot on this site from you folks to know it didn't sound right. I questioned myself still. I haven't liked this doctor for sometime, but I felt stuck. Where it's taken so long to finally get a dx. It's quite emotional. I've just wanted to cry ever since the visit. Sassy