[MSacorn]

Today was my 4-month follow-up. The good news, my bloodwork is good. I test regularly because I'm taking Imuran and possible liver problems.

You may have noticed my slowdown in participation. I've been struggling due to the heat/humidity worse then ever. I'm not sleeping, yet exhausted, the hands' hypersensitivity has added the legs/feet now too. So after giving a rundown of new sx, to the NP, the doc comes in to see me.

She has been stumped by me since day one (over a decade), my hands have always been a huge issue. Many MS'ers have the legs/feet. Not me, I never could follow the crowd. So, I suggested going back to one of the original meds I dismissed (early in my treatment) immediately due to sleepiness. I've got so many meds that do that, I handle it alot better now. Not working has also made it easier to not have to be at the top of my game constantly.

She starts looking through my book of a file and I ask her about upping my Trileptal (anti-siezure) since it helps the tinglies which have worsened too. She's like great, lets do it.

So then I ask about going back on Wellbutrin, the only med to give me any real hand relief. I figured (without a medical degree) that since I'm on anti-siezure med and upping it, why not.

Backstory, I had a siezure in 2002 while on it. Noone had a reason so Wellbutrin was axed and the search for a replacement began.

Since then I've learned via another neuro that siezures seem to be a component of my MS. So my doc says we can do that too. There is a slower acting version available.

So they are removing Wellbutrin from my medical no-no record. I've started ramping up, today with the Trileptal. After getting that stable, I can fill and try the Wellbutrin.

It's not LDN (she still says no) but maybe I can start feeling better soon. My brain keeps locking up and I'm finding it extremely frustrating to say the least.

I've not given up on LDN. I just tabled it until I feel better. That's it from here. I'm going to lie down for a bit and watch the Browns game.

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[Victor H]

I hope that you feel better.

-Vic

[weegot5kiz]

MS I hope you feel better real soon and hope the meds change help you,

[SallyC]

Well, Bappy, Darlin, I hope your med changes, bring you much needed and deserved relief. I don't see where adding LDN would do any harm, but keep working on 'em.

I hope you feel better soon..

[NurseNancy]

i hope you feel better too and that the meds will do their job.
relief is always welcome when you're suffering sx's.

[Dejibo]

I hope you feel better soon.

[Jodylee]

I hope you get some relief, Acorn . The merry-go-round of meds is just a pain in the butt.

[Jappy]

Hope that you start feeling better.

Isn't it amazing, we don't have the degrees but we know
what our bodies need.
Some drs. get a little annoyed when the patient starts asking
for certain meds. They take it as an insult to their knowledge.


Jappy

[lady_express_44]

Hi Beth,

I know you have experienced those wicked "spinal headaches", like me, and now you mentioned siezures. I've been wondering about what I have experienced is MINI-siezures too . . . but how did you know that's what it was?

Mine feels like there is "thunder" in my head, I feel dizzy/spun out and nauseous, and it occurs while I am sleeping (but the "thunder" wakes me partially). I haven't been able to find anything on the net about this, and only thought to mention the part about the dizziness/nauseous sensation to my doc. He suggested "positional vertigo" . . . but I've never felt sure about that explanation.

You have C-spine (and maybe brainstem) lesions, right?

Hope you get to feeling better soon with these new/resurrected meds.

Cherie

[MSacorn]

Originally Posted by lady_express_44

I know you have experienced those wicked "spinal headaches", like me, and now you mentioned siezures. I've been wondering about what I have experienced is MINI-siezures too . . . but how did you know that's what it was?

Mine feels like there is "thunder" in my head, I feel dizzy/spun out and nauseous, and it occurs while I am sleeping (but the "thunder" wakes me partially). I haven't been able to find anything on the net about this, and only thought to mention the part about the dizziness/nauseous sensation to my doc. He suggested "positional vertigo" . . . but I've never felt sure about that explanation.

You have C-spine (and maybe brainstem) lesions, right?

Hope you get to feeling better soon with these new/resurrected meds.

Cherie

I asked my siezure neuro how you know it's a siezure. He says you don't unless you had one before. That is how I figured out what my second experience was.

Most of my leisons are c-spine, I do have 2 brain leisons from the beginning, though. My brainstem, I'm not sure.

What you described did strike a chord with me, so I just stopped writing, and did a quick look for my epilepsy info. It figures I can't find it. This website has all the info I have and more.

http://www.epilepsy.com/EPILEPSY/main_epilepsy

I'm sorry I don't feel better so I can look through the site for you.

I'm puzzled why your doc would just give you a short answer, and that is that, close the subject.

Have you had your thyroid checked. As a teen one of my sisters had storms when sleeping, along with her bugged out eyes, that led to her receiving a dx. She is still on meds nearly 30 yrs later.

Trust your instincts and keep looking for answers, especially if it is an ongoing issue. You strike me as that way anyway.

Please let me know if you find out anything.

's