GP appointment

[gidge]

Hi all, well I saw my GP today I waited as long as I could to go hoping he would have a letter from my surgeon, and he did. So I first of all told him how the appt went (because sometimes there is a difference between what happens in an appt and what shows up in a letter but this dr has been very good) and when I was done he said that the surgeon had pretty much said the same the same thing but that he seems to feel that I am really presenting like an MS patient and mentioned something called a "form fruste"...if anyone knows what that is I would appreciate it...

anyways he says my case is very unique and that he wants to do a MRI of my brain stem and there is the mention of the rhizotomy if I chose further surgical measures down the road but made it clear that there was no rush if I could try and manage on the meds and that it was my decision (no mention of the downsides or risks of rhizotomy unfortunately)

I'm kinda worried as he does say that I"m having "neuralgia like" pain which being the worry wart that I am , thinks is he saying that I might not have TN..which he said in my appt that I did that is was just presenting uniquely..could just be the way he used his words I don't know, he also doesn't mention anything about my remaining scar tissue that he found on my brain, that I'm still having a tremor and double vision or the numbness and tingling in my left leg and arm and I guess I worry about insurance etc...probably over worrying right?.

anyways I expected my GP to say that we should waive the chequred flag so to speak and let everyone know I wasn't going to get any better as that was what the surgeon had essentially said to me verbally but did not say in letter and my GP said we should give it more time , wait for the MRI of my brain stem etc and go from there.....call me confused....hope this makes sense to the rest of you:(

he does mention Zofran for the nausea so I have a prescription to pick up for that but my GP is concerend because it turns out it is a SSRI and I have had alot of trouble tolerated those in the past (heart racing, hives, hands swelling) but I am willing to give it a shot if it might make this nausea abit better.

so I guess we are still in a wait and see and my surgeon has said when I asked if I should find a "TN neurologist" as my current is a MS neuro that I should stick with him (the surgeon) so I assume that he will see me after the MRI I don't know.....hope any of this makes sense as I am very confused about all of this now and again if anyone knows what a "form fruste of MS" is that would be great....

[Rudy's Mom]

Hi Gidge, Just read what your GP had to say. I hope you get some answers from the MRI. Keep us posted. We're all praying for you. Sheila

[EE03]

Hi Gidge,

This is an online definition of forme fruste;

forme fruste (fôrm frst, früst)
n. pl. formes frustes (fôrm frst, früst)
An incomplete, abortive, or unusual form of a syndrome or disease.

I've had my fair share of confusing appointments. Hang in there and keep us posted. I'm sorry I can't be more helpful. Hopefully the MRI will be okay.

Big hugs to you, Ellena

[gidge]

I am still having trouble logging in I have to try at least 4 times it keeps asking me to re-enter my password is anyone else having this??

Thanks Sheila good to hear from you I hope you are doing ok and remember we are all here praying and sending good thoughts for your MVD on the 13th. This time they are going to fix you up good and you'll feel like a million bucks so just hang in there!

Ellena thanks so much for the definition of the forme fruste MS...so it sounds like he thinks I have either a odd form of it or a partially form....well that's confusing isn't it?

I have been really overwhelmed since yesterday and just keep bursting into tears I really thought we were going to be waiving the chequred flag so to speak yesterday and start dealing with the "I'm not going to get any better for now" part of this yesterday but my GP wants to give this more time and wait for the MRI before we do that...which I know is positive it's just mixing my brain up , and I know work is going to be putting the pressure on and the bills are piling up, having said that I am no closer to being able to go back to work right now then I was when I left so I pray that no one can try to make me return in this condition...see I am having awful thoughts, can't seem to help it...better get outside for a walk before the queasy part of the day comes and see if I can get brain on straight a little better....thanks for listening and being there!!

[bomby]

I haven't seen anymore posts from you recently. I think of you often because of the common thread we have. I'm sorry your mvd wasn't successful. It kind of makes me wonder how many successful mvd's there are out there.
Are you still seeing our surgeon? I haven't gone back since my failed rhizotomy. I'm just now trying a new anti seizure med. Phasing out my old meds over the next couple of weeks. It is called lyrica. So far so good........ It kind of feels like the vise is letting go, that is always clamping down on my cheek.
My gp is very hopeful, he also has two other patients with tn, so he is very interested in my experiment. It sure seems like the ocurrence of this disease is getting to be more prevalent. I thought it was quite rare.
Anyways, an update on your condition, and progress would be of interest to me.
Keep smiling, as long as it doesn't hurt too much.:)
All we have is hope right?? It can't possibly get any worse, can it?

[gidge]

hi there...well good to hear from you and this post is from awhile ago!

I have been posting on the new canadian TN page do you know about it? I got the link here you should c'mon over , I post here and there but it's good to share "local" info.

good to hear the Lyrica is working for you I can't take it I had awful trouble with neurontin and this drug is closely related to it but I hear it works for some people. I figure it's just a matter of time before a better drug to come along then tegretol but am sure grateful that there is one I can take that I'm not allergic too!

anyways check out the canadian TN discussion site sorry I don't have the link off hand but I know it's here on this site because that's where I got it!