MRI results

[JENNIEO]

so I got a MRI done last week and got the results yesterday - same results as last year's MRI "a bit better, not worse, no new lesions".  I'm assuming this means the existing lesions that allowed the MS to be dx'd in August of 08 are getting dim as expected with no new flares to make things get worse.  Problem is - I feel worse.  Not sure what to do - I go back to the neuro in about 3 months.  I continue to get dizzier, more pain in arms, more congnitive challenges.  I'd appreciate any feedback, suggestions.  I am on Provigil which I'm considering cuttng in half or dropping to see if it is the cause of my dizziness, although Ive been on it since Aug 08 and only in the past 3 months or so have gotten more dizzy.  I take Carbatrol for the arm pain after trying Neurontin and Lyrica, both which didn't agree with me - made me dizzy and hard to think straight....

[sllowe]

Hey Gal!

Sounds like Kath gave you some great info on the meds and some possibilities there. I wanted to say how happy I was to hear about your MRIs and no new lesions! Woo hoo!

How long you been on the Carbatrol? Maybe it's worth asking the Dr. if this is for certain neuropathic pain since you've not received relief....just thinking out loud here. And did you start the provigil after the carbatrol? Or, vice versa. Worth looking at that timeframe on paper see what is coincidental w/what.

And, the wretched cog fog -  It's not uncommon to experience this congnitive decline w/out an increase in lesion load. It's the nature of the beast unfortunately. But, if it's related to meds then it's a whole nother matter.  I was on ambien for a long while and now after being off for over a month, I'm feeling like I can comprehend much better than while on them. I knew they were affecting me, but figured it was worth it to get some rest.

Wish you were feeling better :( but very glad to see you around here.
-shell

[Fluffysmom]

Hi there,

Can you call your neuro's office and discuss how you're feeling with them?  I looked up Carbatrol, it is another name for Tegretol, or the generic Carbamazepine.  How long have you been taking it?  Possible side effects are:

Less serious side effects may include:

feeling dizzy, drowsy, or unsteady;

vomiting, diarrhea, constipation, stomach pain;

confusion, headache, blurred vision;

ringing in your ears;

dry mouth, swollen tongue; or

joint or muscle pain, leg cramps.

I had serious trouble with dizziness, and I had been on Neurontin and then Lyrica for years before it acted up.  I was lucky enough to have a lot of help from vestibular physical therapy.  I still get some dizziness now and then, but nothing like before.

I got a talking-to by my neuro when I saw him on Tuesday.  He wants me to call if I have new or worsening symptoms, want to make a change in meds, etc. He told me to make use of all the resources I have to take care of my health; he and his staff are there, as well as my PCP.

I stopped taking Provigil and Tegretol because of some issues I was having, and he assured me that what I had going on shouldn't be caused by either of those medications, and to never stop something like Tegretol on my own.  He did say Provigil could raise my blood pressure/heartrate, but since I had been taking it for a year and a half, it was unlikely to be the cause; could be from anxiety.  My PCP ordered an event monitor, to track the pounding of my heart, and figure out what is causing it.  

I often take 1/2 of a Provigil, since my insurance doesn't cover it and I can get by doing some things on 1/2 a 200 mg. tablet; you might try and see how it works for you, if you don't have to drive or do anything that would be a problem if you weren't fully alert.  My PCP asked me if I even need the stuff, since it was such a trouble to get.  I explained to her what my days without it are like; I couldn't drive, for one thing.

Anyway, enough about me!  It is possible for there to be lesions that cause damage that don't show up on MRI.  It is good that no new highly visible lesions are visible, and that the old ones are fading, but it's still a good idea to check in with your neuro.  I learned its a good idea to check in even if you think it could be a medication and want to change the dosage!  :o)

Take care,

Kathy