[dmplaura]

Went to my neurologist on Monday. Had a great visit with him. Weighed in at 119 pounds (I'm only 5'2) so that was nice to see, he was thrilled about the fact that I had quit smoking as well.

He did his look over on me. I mentioned the burning head pain, and I agree with him. I can't be taking Clonazepam long term for this... or else I'll just need more and more, and it's habit forming/addictive.

He refused Nortriptyline. Flat out. Said if I had trouble with the others, this would not help either.

So then I asked about medical marijuana. Boy, did his eyes light up. Basically he said, only a pain specialist can prescribe it here, and that those who he knows that receive it now, say it's half as effective as the stuff you buy on the street, basically.

So his parting words on the subject were, "If you get caught, tell em your doctor said to use it for your MS symptoms and pain!".

Haha! Yes, I love my neurologist. 6 refills on Copaxone and said, "See you in June!". He doesn't expect he'll see me back in his office before then at my rate of recovery. Whew.

He is also sending me for a slew of blood work I requested he do again, including ANA. He's also retesting some other ones like B12 just to be sure. I laughed when I saw the sheet and asked, "8 vials?". He didn't quite get it at first, and then I said, "That's the number I expect them to pull out of me". So we had a laugh about that, and he said no they won't take that many.

Oh yeah, and getting cholesterol checked too... which means I've been fasting since 7 pm (ugh). But getting it all done at once is important

Then I only go back for my Copaxone blood work he does in 3 months (February). He talked a bit about that, and he said that VERY few neurologists do that requisition, but that he feels it's important to follow your patient's progress beginning any drug like a DMD. He mentioned a neuro in BC he knows that also does monthly C blood work and I thought of Cherie immediately .

So it seems.. back to work Monday! Course, I do have regular doctor's appointment to attend December 5th (should have blood work in by then I hope) and I have to think about rescheduling a cleaning at the dentist that I've now canceled 3 times (they love me there, truly!).

So that's my update! No word on the 29 gauge Copaxone needles either.. and I asked why the Tysabri stuff was removed from his office. I was given a pamphlet to fill out to mail to my local parliament requesting the government absorb the costs of this therapy for patients. Apparently (In NB at least) Tysabri is $35,000 annually, and I don't believe is covered by many insurances (could be wrong here), but enough problems to prompt such action as this cry for help. Apparently Quebec has it free through the government now?

[legzzalot]

Originally Posted by dmplaura

Went to my neurologist on Monday. Had a great visit with him. Weighed in at 119 pounds (I'm only 5'2) so that was nice to see, he was thrilled about the fact that I had quit smoking as well.

He did his look over on me. I mentioned the burning head pain, and I agree with him. I can't be taking Clonazepam long term for this... or else I'll just need more and more, and it's habit forming/addictive.

He refused Nortriptyline. Flat out. Said if I had trouble with the others, this would not help either.

So then I asked about medical marijuana. Boy, did his eyes light up. Basically he said, only a pain specialist can prescribe it here, and that those who he knows that receive it now, say it's half as effective as the stuff you buy on the street, basically.

So his parting words on the subject were, "If you get caught, tell em your doctor said to use it for your MS symptoms and pain!".

I think we were posting at the same time! I was just asking about this!

[Jules A]

Sounds good! What blood work is he running because you are on Copaxone?

Again many congrats on your non-smoking status.

[karousel]

It is so wonderful that you quit smoking and have lost weight!! Congratulations!!!!

[dmplaura]

Originally Posted by Jules A

Sounds good! What blood work is he running because you are on Copaxone?

Again many congrats on your non-smoking status.

Basically the same that they run on the Interferons. That's what it says at the top of the sheet. And I give a urine sample as well.

PS I was close 6 vials of blood!

[JoeMac]

Great news here Laura I hope you didn't pass out from the 6 viles of blood...LOL.......Its nice to read GOOD news here, I hope things continue to go well for you!


Joe

Originally Posted by dmplaura

Went to my neurologist on Monday. Had a great visit with him. Weighed in at 119 pounds (I'm only 5'2) so that was nice to see, he was thrilled about the fact that I had quit smoking as well.

He did his look over on me. I mentioned the burning head pain, and I agree with him. I can't be taking Clonazepam long term for this... or else I'll just need more and more, and it's habit forming/addictive.

He refused Nortriptyline. Flat out. Said if I had trouble with the others, this would not help either.

So then I asked about medical marijuana. Boy, did his eyes light up. Basically he said, only a pain specialist can prescribe it here, and that those who he knows that receive it now, say it's half as effective as the stuff you buy on the street, basically.

So his parting words on the subject were, "If you get caught, tell em your doctor said to use it for your MS symptoms and pain!".

Haha! Yes, I love my neurologist. 6 refills on Copaxone and said, "See you in June!". He doesn't expect he'll see me back in his office before then at my rate of recovery. Whew.

He is also sending me for a slew of blood work I requested he do again, including ANA. He's also retesting some other ones like B12 just to be sure. I laughed when I saw the sheet and asked, "8 vials?". He didn't quite get it at first, and then I said, "That's the number I expect them to pull out of me". So we had a laugh about that, and he said no they won't take that many.

Oh yeah, and getting cholesterol checked too... which means I've been fasting since 7 pm (ugh). But getting it all done at once is important

Then I only go back for my Copaxone blood work he does in 3 months (February). He talked a bit about that, and he said that VERY few neurologists do that requisition, but that he feels it's important to follow your patient's progress beginning any drug like a DMD. He mentioned a neuro in BC he knows that also does monthly C blood work and I thought of Cherie immediately .

So it seems.. back to work Monday! Course, I do have regular doctor's appointment to attend December 5th (should have blood work in by then I hope) and I have to think about rescheduling a cleaning at the dentist that I've now canceled 3 times (they love me there, truly!).

So that's my update! No word on the 29 gauge Copaxone needles either.. and I asked why the Tysabri stuff was removed from his office. I was given a pamphlet to fill out to mail to my local parliament requesting the government absorb the costs of this therapy for patients. Apparently (In NB at least) Tysabri is $35,000 annually, and I don't believe is covered by many insurances (could be wrong here), but enough problems to prompt such action as this cry for help. Apparently Quebec has it free through the government now?

[lady_express_44]

Originally Posted by dmplaura

Weighed in at 119 pounds (I'm only 5'2) so that was nice to see, he was thrilled about the fact that I had quit smoking as well.

CONGRATS on the weight loss, ESPECIALLY while quitting smoking!! You must have a ton of willpower g/f!!

Originally Posted by dmplaura

He did his look over on me. I mentioned the burning head pain, and I agree with him. I can't be taking Clonazepam long term for this... or else I'll just need more and more, and it's habit forming/addictive.

He refused Nortriptyline. Flat out. Said if I had trouble with the others, this would not help either.

So then I asked about medical marijuana. Boy, did his eyes light up. Basically he said, only a pain specialist can prescribe it here, and that those who he knows that receive it now, say it's half as effective as the stuff you buy on the street, basically.

So his parting words on the subject were, "If you get caught, tell em your doctor said to use it for your MS symptoms and pain!".

So, what are you "supposed" to use for the pain then, if the other options are not available to you? Are you on anything else that helps?

Originally Posted by dmplaura

Haha! Yes, I love my neurologist. 6 refills on Copaxone and said, "See you in June!". He doesn't expect he'll see me back in his office before then at my rate of recovery. Whew.

He is also sending me for a slew of blood work I requested he do again, including ANA....

Then I only go back for my Copaxone blood work he does in 3 months (February). He talked a bit about that, and he said that VERY few neurologists do that requisition, but that he feels it's important to follow your patient's progress beginning any drug like a DMD. He mentioned a neuro in BC he knows that also does monthly C blood work and I thought of Cherie immediately .

HA! My neuro doesn't EVER do bloodwork on me, but that's probably because I use very few drugs, and none that should/could cause problems. I get my regular annual bloodwork (cholesterol, diabetes, etc.) by my GP, but that's it unless it's necessary for "other" health concerns.

Originally Posted by dmplaura

So it seems.. back to work Monday!

Good luck!! Are you "phasing" back into the job, or is it back to full-time from the get-go? Most STD/LTD offer "back-to-work" phase-in plans (still get paid disability for p/t, regular hours for the rest...), which I would personally HIGHLY recommend.

Originally Posted by dmplaura

I asked why the Tysabri stuff was removed from his office. I was given a pamphlet to fill out to mail to my local parliament requesting the government absorb the costs of this therapy for patients. Apparently (In NB at least) Tysabri is $35,000 annually, and I don't believe is covered by many insurances (could be wrong here), but enough problems to prompt such action as this cry for help. Apparently Quebec has it free through the government now?

Yeah, I heard that Quebec's "socialized health care plan" is the only provincial plan that covers it, and that happened very recently:

http://www.msrc.co.uk/index.cfm?fuse...ow&pageid=1905
(2nd article on that link)

I'm fairly certain a lot of other insurance plans do now too, but maybe Weeble would know more about that because she was on it here in BC.

I was surprised when Health Canada approved it here so quickly after it was reintroduced in the US . . . but approving it and paying for it is two different things. Often they wait 2 yrs after a drug has been on the market to evaluate it's effectiveness and risk, before they might "encourage" Canadians to use it (by paying for it).

Remember too that we don't have the TOUCH program here, so there is a possibility of much more risk. Our government doesn't like "risk" too much either, especially if they are paying for it or will be accountable in some way if they don't have a good program to "manage" that risk.

Cherie

[dmplaura]

Probably more reason it was removed from the office (lack of TOUCH program) but you know secretaries, they don't want to get too chatty or else they don't get work done.

Health situation here is not good. I overheard secretary tell someone on the phone that the wait to see my neurologist in particular is at least 1 year. She said, "Well you could TRY calling others..." but didn't sound very hopeful for the person. Unreal.

Cherie, I am going back to work gradually. I think I'm going to enjoy it very much. I'm so sick of sitting around at home. Ugh. It'll be like, M, W, F 12pm to 4pm (first week), then M-F 12PM to 4PM (second week), then M,W,F 12pm to 5 pm (third week)... working my way up to 7.5 hour days. Takes 7 weeks? Or something... I didn't do the math ROFL

I guess it answers my question about MRIs here too. No additional MRI was suggested by dear neurologist, so it seems that unless I crash and burn in a major relapse, no repeat MRIs in my case.

Cherie, I honestly don't know. I'm going to talk to my GP (or family doctor if you may, lol!) and see about a pain specialist. I know of one in Moncton who may be a good man to see, and he has 5 star ratings across the board. Some of the pain MAY be related to TMJ, but I think that ATN (atypical trigeminal neuralgia) is to blame. Who knows though.

[lady_express_44]

Originally Posted by dmplaura

Health situation here is not good. I overheard secretary tell someone on the phone that the wait to see my neurologist in particular is at least 1 year. She said, "Well you could TRY calling others..." but didn't sound very hopeful for the person. Unreal.

Cherie, I am going back to work gradually. I think I'm going to enjoy it very much. I'm so sick of sitting around at home. Ugh. It'll be like, M, W, F 12pm to 4pm (first week), then M-F 12PM to 4PM (second week), then M,W,F 12pm to 5 pm (third week)... working my way up to 7.5 hour days. Takes 7 weeks? Or something... I didn't do the math ROFL

I guess it answers my question about MRIs here too. No additional MRI was suggested by dear neurologist, so it seems that unless I crash and burn in a major relapse, no repeat MRIs in my case.

Cherie, I honestly don't know. I'm going to talk to my GP (or family doctor if you may, lol!) and see about a pain specialist. I know of one in Moncton who may be a good man to see, and he has 5 star ratings across the board. Some of the pain MAY be related to TMJ, but I think that ATN (atypical trigeminal neuralgia) is to blame. Who knows though.

Neurologist appointments aren't too hard here . . . I can get one in a week or less, but maybe that's because I am already dx. Perhaps there is a shortage there?

Glad about the progressive back-to-work plan. Good luck!!

MRI's are a mostly just a dx tool in Canada. I'd be surprised if he EVER voluntarily recommends another ... unless 2+2 doesn't add up to MS in the future.

My sister has that same pain/burning you have, and after 10 yrs of suffering with it, she finally agreed to take a drug that seems to be helping (or it just happens to be going away on it's own, coincidentally ). It's probably just neurontin or something, but I'll ask . . .

Cherie

[Desinie]

Sounds like you're doing great,Laura! Glad to hear it.