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Posted 6/27/2006 12:26 PM (GMT 0)
I should be getting dressed and ready since it takes me longer to do, but I thought id post instead. lol  I have a neuro appt later this morning, with yet another "new" neurologist.  I hope im prepared, I have MRI's on CD at hand, all labs, reports, tests, even individual previous dr's notes too. 

Im back at my fatigue stage again, thats what i call it anyhow.  Seems like i cant sleep enough, even had to come home early yesterday from work for a 4 hr nap, got up around 8pm and back to sleep before midnight and slept past 7am this morning.  Only been up for a lil bit and feel i could sleep for a few more hours.

My eye appt yesterday went well, Eye dr said eye is healthy not damage from is view to the optic nerve.  Yippeeee!!!!!

I'll let ya know how the appoint goes when i get back home.

Cyndi

Posted 6/27/2006 3:24 PM (GMT 0)
Hey Cyndi

I'll be looking forward to hearing how u'r appt goes. I know u'll do fine and since u have all u'r doc reports and notes, u'r doc has a good oppertunity to give u great care. Good going Cyndi! I'll keep u in my prayers today. I know the fatigue is horrible. I've just been thru the 'sleepy' stage myself, tho i know mine was due to overdoing things around here. Spent the last week sleeping almost non-stop. My family is happy to see me out of my coma! I hope for u it passes quickly as well. Have u ever tried Cymbalta?? I tried provigil and welbutrin and neither of them were right for me, but Cymbalta has been great! I still have some residual symptoms and some days they're worse than others, but for the most part my fatigue is gone and my other symptoms are very minimized!! I hope u get some much needed relief and answers very soon.

rhonda
Posted 6/27/2006 8:18 PM (GMT 0)
Tuesday p.m.

 

Dear Cindy:  Great luck to you.  I have posted in the past...asking everyone to name their worst MS symptom...and for me, it is fatigue.  And noone who is not a MS patient can understand the deep MS fatigue like we lkive with..

 

It is not being tired, just this craqzy deep I have to go lay down kind of fatigue.

 

Have you checked with your local/state MS society for a refferal to a MS specialist neuro?

 

Great luck.

 

John

Posted 6/27/2006 11:07 PM (GMT 0)
Well the appt didnt go the way we would have liked. Dr didnt say what it is or why or what she even suspects, except for 4 possibilities, 1) low grade tumor, 2) stroke (even though the MRI doesnt indicate the lesion as a stroke and all tests coming back normal except for high homosystein level), 3) seizures, caused by the lesion (then again couldnt say why or how) and 4) MS. So more tests are needed, gave more blood, she wanted trileptal level checked and my thyroid ckd, another EEG and have and head with c-spin MRI tomorrow evening. She increased my trileptal to 900 mgs per day, increased my folic acid to 2 mg per day and increased from 81 mgs aspirin to 325 mgs perday. Said that regardless I will need MRI's every 6 months to monitor the lesion (said its small but not that small cm not mm is what she said) like to me there really isnt a difference. Big or small its still there. Husband called the GP and said ok now what, its like we are starting all over again. He instructed that if we are not satisfied with what she reports after all the results are in that he will do paper work for me to go to a mayo clinic, which there isnt one in this state. I'll keep ya posted. Time to just veg on the couch a bit
Cyndi
Posted 6/28/2006 12:31 AM (GMT 0)

whtedragons78 said...
Well the appt didnt go the way we would have liked. Dr didnt say what it is or why or what she even suspects, except for 4 possibilities, 1) low grade tumor, 2) stroke (even though the MRI doesnt indicate the lesion as a stroke and all tests coming back normal except for high homosystein level), 3) seizures, caused by the lesion (then again couldnt say why or how) and 4) MS. So more tests are needed, gave more blood, she wanted trileptal level checked and my thyroid ckd, another EEG and have and head with c-spin MRI tomorrow evening. She increased my trileptal to 900 mgs per day, increased my folic acid to 2 mg per day and increased from 81 mgs aspirin to 325 mgs perday. Said that regardless I will need MRI's every 6 months to monitor the lesion (said its small but not that small cm not mm is what she said) like to me there really isnt a difference. Big or small its still there. Husband called the GP and said ok now what, its like we are starting all over again. He instructed that if we are not satisfied with what she reports after all the results are in that he will do paper work for me to go to a mayo clinic, which there isnt one in this state. I'll keep ya posted. Time to just veg on the couch a bit
Cyndi

OK, so I'm confused. (Nothing new, there!!)  Seems to me, from what you reported here, the doctor DID suggest 4 possibilities, which you delineated.  And it appears that she is trying to sort through the possibilities, with the other tests, and another MRI, and an adjustment in medications.

It's pretty common to try to do all that, and continue to monitor the situation (with the MRI scheduled in another 6 months), to see what develops.  While it's always scary to have a lesion appear in/on your brain, remember that lesions can be there for all sorts of reasons..including benign ones...but it's important to figure out what caused it, and whether it changes in size (diminishes or increases in size).

Sure you could go to yet another doctor -- and indeed, start all over with more tests.  Or you could see what happens with the next round of tests with THIS doctor, report to her if new symptoms develop or current symptoms worsen, and get the MRI again in 6 months, and see if there are any changes.

I'm sorry you didn't get a definitive answer. But that's sometimes very hard to get, with these kinds of disorders.

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