[dmplaura]

As some know, I suffer from Multiple Sclerosis (almost 100% sensory pain), TMJ (tempomandibular joint disorder) and Trigeminal Neuralgia (Atypical).

My pain is daily, and can be quite severe. I've tried several drugs without success. Currently I take Clonazepam, because it's the only thing I have not reacted absolutely poorly to, and does dull the burning pain I have on a daily basis.

After a conversation with my neurologist, it was decided the next step would be to see a pain specialist. I spoke to my GP today about this.

She laughed when I said pain specialist. Apparently, there's 1 in my city. Apparently he's excellent (I know, I've read his reviews... all glowing).

Here's the catch... 2-3 year wait to see him.

Can I live in pain for that long?! Clonazepam makes me sleepy as heck. It's almost impossible to take at work. I can take it and down the coffee. That's my only hope as I see it right now.

I think my decision about a move to Florida may be finalized.

[slskckjebw]

I understand your situation. My TN started on my right side several years ago. My MS doctor put me on Trileptal and it worked ok for a while then I had to double it.
The TN then started on the other side of my face. and I was taking Advil as often as I could along with Trileptal.
In September I went back to my MS doctor and let him know that my face pain was not controlled anymore and he added Clonazepam. It helped a great deal with the problems I was having with leg cramping at night and it knocked the face pain right away!
The doctor didnot mention to me it would help TN also, I thought he was giving it to me for leg cramping.
I figured it out just recently though. I went to my MS doctor last week and mentioned the Clonazepam was making me feel very sleepy during the day so he told me to take the Clonaz at bed time and take Zanaflex during the day.
I did that for 2 days and WOW did the TN pain start coming back. I could hardly stand it.
I went back to my 0.5 Clonazepam twice a day. I take Provigil and have started drinking coffee and Pepsi and I manage to find my way through the day. However I do not have a job to go to however I do have 5 children to look after.

I am sorry you are having a difficult time with this. I know how much you need the Clonazepam and to have to wait that long to see a pain doctor is insane!

Originally Posted by dmplaura

As some know, I suffer from Multiple Sclerosis (almost 100% sensory pain), TMJ (tempomandibular joint disorder) and Trigeminal Neuralgia (Atypical).

My pain is daily, and can be quite severe. I've tried several drugs without success. Currently I take Clonazepam, because it's the only thing I have not reacted absolutely poorly to, and does dull the burning pain I have on a daily basis.

After a conversation with my neurologist, it was decided the next step would be to see a pain specialist. I spoke to my GP today about this.

She laughed when I said pain specialist. Apparently, there's 1 in my city. Apparently he's excellent (I know, I've read his reviews... all glowing).

Here's the catch... 2-3 year wait to see him.

Can I live in pain for that long?! Clonazepam makes me sleepy as heck. It's almost impossible to take at work. I can take it and down the coffee. That's my only hope as I see it right now.

I think my decision about a move to Florida may be finalized.

[Momma's Kids]

I was in a similar situation...if you can get your PCP, Neuro, and any other drs. to call that this is an emergency, you might get in within a few weeks or months at the latest.

My Rhemie called a neuro and told him I couldn't wait a year...the neuro called and within two weeks I had an appointment. I also have TMJ, along with the rollar disc missing so that my jawbones are actually resting on each other. The pain is not daily thankfully, but I know just how bad it does get so I do hope you get relief.

I wore a splint 24 hrs a day for a year, then just at night for several years. I still have it, but no one here to adjust the thing. It really helped some, they told me I was fortunate that I don't have more pain. The doctor seemed to think part of the nerve is dead, I wouldn't agree to the testing for that...way too painful just the few tests they did complete.

Call your PCP ask if a lil ole push wouldn't help...

[dmplaura]

Eep, you know, the 5 children would be like trying to manage 5 jobs at once.

I commend you for it. Especially knowing somewhat the type of pain you experience, and the fatigue from the medication you need to take to function.

[hollym]

Originally Posted by dmplaura

I think my decision about a move to Florida may be finalized.

Pittsburgh is way closer and this place is lousy with doctors. It's also not that far from Gazelle!!

[dmplaura]

Originally Posted by hollym

It's also not that far from Gazelle!!

Living in close proximity to Gazelle could be a good OR bad thing...

[hollym]

Originally Posted by dmplaura

Living in close proximity to Gazelle could be a good OR bad thing...

It all depends on how much trouble you want to get into.

[Jules A]

That stinks that there is only one Doctor in your area. Could you cozy up to his scheduler and maybe have her call you with a cancellation? I did that with my MS specialist's receptionist and she was a huge help. I asked if it would be ok to call her a couple of times a week to check for availability. Maybe she just got sick of hearing from me but I got in within 3 weeks as opposed the the 3 months they estimated.

The only other thing I would think is to maybe check around for another great doc and just travel to whever they are located. Wish it wasn't so difficult.

[dmplaura]

Jules, great ideas

I'm going to talk to my chiro (who's been with me since May 07 and has seen all of what I've been through and kept extensive records). He knows the pain I've been in, and can vouch for it. Plus he's an 'inside' voice in the network of doctors around here, so he can likely get a foot in for me

[lady_express_44]

I know there are long wait-lists for specialists in Canada ... but if you have a good rapport with your doc (and I know you do!), than they can pull strings. My doc always gets me on the top of the list of every REQUIRED test or surgery.

I know it seems like MS is very common, cause we hear about it all the time in our "network" of friends . . . but from my experience, the medical community has considerable respect, fear and empathy for this disease. They've always handled me with kid-gloves and have given me the utmost priority, WHEN they know about the MS. Use it to your advantage in this case!

If all else fails, complain till they agree to send you to another city. They will often pay for the trip, accomodation, travel, etc. if the wait is unreasonable.

Cherie