Hi Guys, I'm back !!!! and quite tanned, actually ...LOL

[candy158]

Hi you all, thank you all for your prayers and thoughts while I was away.  It means alot....

We had a pretty good trip, took lots of pictures, and as soon as my hubby shows me how to put them on my little puter, I will be posting some.  So, keep watching...

The resort was ok, but nothing to great.  We had to change rooms once in the early days, as the bugs, and **** roaches we to abundant.  The a/c did not work either, and we were totally creeped out by the bugs.

So, we moved , after a huge fight with the manager of the hotel, after he told us that " this is Cuba ya know, and we live in the jungel, and the humidity cause the bugs to come in" .
We in turn said........ " SO WHAT , we don't want bugs in our room, or our bed, or our clothes, and who was to say that we would not bring them back to Canada in our luggage"

So, needless to say, we did get moved, and it was NOT MUCH BETTER .... I think he planned it... LOL .... after about 5 days of repair men coming into our room at all hours of the day and night, we had our room to ourselves.  By then the heat was so incredible, and the humidity was oppressive for me, that I spent my time mostly in the room reading the Hunger Games books..... ( odd books, but curiousity got the better of  me, and I read all three) ....I felt guilty about not keeping up to Norm, but he was so understanding and did not seem to mind being alone and swimming on his own,..... hoping we can do better next time, but NEVER Cuba again ... I'm a Mexican at heart.... LOL

On my return to Canada though, I did see the new Neuro ..... but I was not impressed at all, and here is why,

This man had never seen me before, and did not even read my file before we got there, so we had to go back 4 years, and feel stupid that we could not remember so many of the things that he wanted from me.  

He wants me to stop the Copaxone , said that the side effects are quite plenty, and he said that I should know by know if it was going to work..... well, I was told by the neuro that put me on it, that it would take 6-9 months  to know if it was going to work..   I have re-read the info that I got, and I'm seeming to be right.... The next thing he did, was to say to stop my Gabapentin too.  He says that I could just stop it cold turkey.... I'm on 2700mgs. per day, I and I have read about the horrible things that could happen to me if I do this.  So, I read also, that I should decrease it gradually over a period of months, and to avoid doing it all at once.  

What are your feelings on this, am I right about my concerns.  I don't want any more bad stuff happening to me.  

He also added Fibromylagia to my list of ailments, and did not say what to do, or how to deal with it.  

I see my Neuro in October, and don't know if I can wait that long ...

Please help, and watch for pictures, I will post them soon,

((HUGS))
Candy

[candy158]

I so agree Lulu, but what can you do, this is a good hospital at UBC in Vancouver, and I really have no where else to go..... I'm really at my wits end, and feel like I am being swallowed up in negativity.......... and this is not fun at all....

[Lulu54]

My neuro says even if it is SPMS, he wants to treat the patient aggressively on the chance that it will work and make a difference.  Just because these haven't been thoroughly investigated for SPMS through clinical trials doesn't mean they don't work one way or another.

So sorry Cuba was tough - I wondered about that before you left but hoped your tourist experience would be good. The country is so impoverished there is very little luxury to share with tourists.

welcome home - I hope you can avoid this new neuro because he sounds ill informed.

[jensequitur]

That's what concerns me - that a neurologist should be confused by the numbness on your tongue, mouth and face.  I spent a year with the right bottom lip being numb.  I kept biting it, so I know the pain nerves weren't broken - just the fine touch nerves.  Ouch!

They're on the fence about whether DMDs will help SPMS.  Since they don't know why they work in the first place, I'm not sure what they're basing that on!  Many neuros will hold off on diagnosing you with SPMS, because the insurance companies stop caring.  Sad, really.

[candy158]

Hi Jenn, my neurologist from UBC wanted another opinion on my numb tongue, and roof of my mouth, and the tip of my nose.  So, he didn't even know why I was there, let alone another opinion.  She was "perplexed|" because my spine came up without lesions.  Though he did say my MS dx is right, and that the kind is wrong.  that the RRMS should be SPMS, and that is what they seemed to think a while ago, from the beginning actually.  So, he does not think that DMD's will work anyhow.....

I just don't know what to do now....

[jensequitur]

This new guy sounds a little whacked, if you know what I mean.  I think he hasn't researched your case, and he's making snap judgements.  You're absolutely right about titrating down on Neurontin, and if he doesn't know that, it should be a red flag.

Looks like you can take 300 mg less per day, or if that's too quickly, you can go down 300 mg every three days.

Who referred you to this neurologist?