I am back and rather surprised!

[Rena705]

Hey all...I am back from my appointment and all in all I think it went rather well.  Yes...for those disbelieving eyes I will say it again...I think it went rather well!  hehe

First of all I was seen by a resident that is working with Dr. G. but he is a Pediatric Neurology Resident at the Stollery Children's Hospital.  I had done up a time line and gave it to him and mentioned that I had given Dr. G. the first part of my timeline at the last visit.  He replied, "yes, I have sat down and read the whole thing to get to know you and your case better"!!  What a shock that was to begin!

Then we went over what is bothering me right now, what has changed since the last visit and he did a lot of explaining for me!

1.  Apparently, the paratrigeminal neuralgia that I was told I am suffering from is NOT the textbook type of trigeminal neuralgia that I would (and have) found on the internet.  He said that if I in fact HAVE paratrigeminal neuralgia, it is directly related to my MS and it is highly unlikely that anything other than my MS that would have caused it.  The BONEHEAD DR.  told us that my eye would stop drooping within a few months and the pain would go away...so far my eye is still drooping and I am still in wicked pain at times and it isn't going anywhere!!!

2.  DR. M., the one that wouldn't see me and she said my disease was in remission and that there was no relation between my trigeminal neuralgia and my MS and there was nothing she could do to help me and basically told me to take a flight off a high cliff with no parachute...WAS WRONG!!!  Big surprise there eh?

3.  The resident did a full exam on me and I explained the increase in tingling, the trouble with speech, pain in my legs etc. and he said that they are related to the MS but he is not ready to do an MRI yet.

4.  Then Dr. G. came in and sat with me and listened to me and he finally said, 'I DON'T THINK YOU HAVE TRIGEMINAL NEURALGIA, IT THINK DR. BONEHEAD WAS WRONG"!!!!!!  Well, ok he didn't call Dr. W. Dr Bonehead but he did say that he thinks Dr. W. made an error in diagnosing me with this trigeminal neuralgia!  I almost got up and did a happy dance because hubby and I never thought he was right!

5.  I explained to Dr. G. about my trouble with fatigue and he has given me Amantadine!  No questions about what meds I am on (I had it already written out), no jumping to conclusions that I am taking my meds at the wrong time of day...nutting like my gp telling me it's just my meds...he says it is related to my MS!

So, I know it's not what we had hoped for but hey...it is more than I have gotten since October 2006 when I started suffering and he will see me again in six months or so unless things get out of hand for me.  He said that he would make himself available at any time I may need to see him in the meantime.

Dr. G. feels that what is ailing me is some sort of migraine that is directly related to MS and he is increasing my Elavil to 40mg/day.  I was on 20mg/day but he feels that this might help with the migraine pain and the pain in my legs as well as the nerve pain in my feet.  I will give it a whirl for sure.

So, this is not the DMD's...I never even brought it up with them because I figured that if they are ready to get me on em they will and I just didn't have it in me to fight today.  Actually, thankfully while I was there my ice pick pain started and they could see my face start to droop before their very eyes!  They did all sorts of tests and they are going to do some research into whether or not anyone else has this ailment and if so, how it is being treated.  If they don't find anyone or any other information on it they may be using me as their so-called guinea pig I guess.

I have to say that I didn't get all that I wanted today but hey...at least I got somewhere and that is a whole lot farther than I have in the past with the loser Neuro's I had to deal with.  

Well, I am really tired right now so I am going to relax with hubby.  There are probably a few questions and go ahead and ask and I will get back here in the morning at the latest ok?

I really appreciate all the care and concern that you have all shown prior to this appointment and I am glad to report that I think this is good news and a step in the right direction.  As I said before I don't think I can fight anymore...at least right now so I will let sleeping dogs lie and see how the meds work out.  I will keep you updated and as I said...anymore questions, I will answer in the a.m. ok?

Lots of Hugs,
A Happy Rena for a Change :)

[saveone]

Seems like everyone pretty well covered everything and I don't know of anything I can add other than like them I am so glad you feel good about this appt and seem to be getting some help.

take care and slay the big one. Oh I forgot I think I saw a picture where you had slayed the big one :0)

Hugs, terry

[sllowe]

YAY!!!!!!!!!

This is the break you needed!

Maybe it wasn't their immediate concern (since the DMDs are life long/term, etc).  

Maybe they wanted to get this current nightmare under wraps a bit before they moved forward w/DMDs.  No matter, they acknowledged and I'm just so happy for the care you received Rena - finally!!!!!

Rest up honey, sounds like you need it.
(((hugs)))
shell

[Wobbly]

Hi there, it sounds like you found a Dr that will listen too you and be there... finally... I took Amantadine for awhile for fatigue...it took a couple of days then it helped alot,..but I only too one a day.. I felt too high on them when I took two..but meds seem to really get me??

I am glad you have someone that will help... let them know how it goes and good luck with the meds..

let us know how it goes hon

take care
wobbly

[Rena705]

Hey girl...I didn't get a chance to ask about the clinical studies...I was just so busy sucking all the information out of those doctors that I could while they were still cooperative that I didn't even think of it!  Next time I will bring this up.

As far as the report goes...it's strange don't you think?  It's almost as if they are saying something about me that they don't want me to see or something...sometimes I get really paranoid and start to think they are plotting against me or something!  hehe
I am going to look up the Health Information Act and see if there is anything there that might explain it!  I was just thinking though...when I did call Melissa and ask about the report after the 1st appt. I had with Dr. G. she said it wasn't done and that she would send it when it was done.  When I called again the new person said that it hadn't been done and when it was a copy would be sent to me.  When I asked the receptionist yesterday about it...she looked in my file and couldn't find a report done by Dr. G!  Perhaps the report wasn't even done yet and he was covering his hiney??? Makes ya wonder doesn't it?  He did have 7 MONTHS to do it but that doesn't mean anything does it?
I will drop you a line and let you know ok?
Rena

[doublevision1]

ps: with so many other questions, I forgot to ask about clinical studies for SPMS.  Did you ask if there are any they are recruiting for right now?  I have found if I want this type of info from my neuro, I need to bring it up.  My sense is perhaps they are cautious not to 'push' patient into participating, esp those with a placebo component.  

Re: your report, I'm not aware of any change in practice.  Mind you, I got my last one from my GP as I had an appt already booked with her a couple of weeks after my last neuro appt, so it was easy for her to just print it off.  However in the past I have always received my copy in the mail from the clinic.  Every MD in this province is aware of the Health Information Act and knows that patients are entitled to receive copies of their reports upon request.  There are some exclusions in the Act, I can't recall what they all are, but if your request is denied then you ought to be informed of the exclusion that is being invoked.  

[Rena705]

Ok...where to start here...hmmm

Well, I asked Dr. G's temp why I hadn't received a copy of the letter sent to my gp.  She said she would ask Dr. G.  When I emerged from my meeting with Dr. G., I asked if she had asked Dr. G. or not about the letter and she said she would ask him then.  He walked over and I explained to him that I had requested a copy of the letter he sent to my g.p. from Melissa (his receptionist) and he said that I would be best to get a copy of it from my gp as they are not in the practise of giving out this information to patients!!  He said, "Melissa isn't here anymore so you had better ask your gp about this."  So, I am wondering what that is about because Melissa said there would be no problem in sending this to me but I guess I am s.o.l. in that department eh?  Since my gp doesn't want me to see any of my chart I doubt that I will ever see it unless I sneak a peek when she isn't in the room.  I would like to know what they are trying to keep from me though...since seeing this information is within my rights as a human being but I am being denied to see it every which way I turn...makes ya a little paranoid if you know what I mean!  haha

The Amantadine...I found it really strange that when I went to pick up this Rx the pharmacist said that it was a anti-viral and when I told him I was using it for fatigue he had never heard of this before.  This is a new pharmacist but one would think he would know about this because there are soooo many people in Alberta that I am sure are using this med for fatigue!

As far as the DMD's go...we didn't even discuss them.  I guess I will see how I am when I see him next time and then I will bring this up with him again.  I will look into what is covered and if I fit the criteria for Blue Cross or my husbands insurance will cover them prior to going next time.  The resident did notice the weakness on my left side that wasn't there before and assured me he would bring it to Dr. G's attention.  Other than that I guess I will work to prep for the next visit and have all my ducks in a row as far a coverage for the DMD's. To be honest, the subject just was not brought up by either party.

Well, I have to go get myself moving...the Amantadine isn't working so far but I have only taken one!  But if I don't get a move on I am going to fall asleep!

Thanks for your input and db...let's hope the winter holds off for a while yet...I want to go fishing some more yet!

Lots of hugs,
Rena

[Heather3418]

It DOES sound like this appointment was much better than others.  It still worries me that you are not on any DMD's.  I guess that is going to happen in all due time.  I pray that you do not have any permanent damage from not being on a DMD.

Remember to take the doctor up on his offer.  If you are having ANY problems, call and he will see you again.  At least this guy seemed to read through your records thoroughly.

So happy for you, Rena girl.  Things seem to be looking up, where doctor's are concerned.

Big Hugs,
Heather

[doublevision1]

your appt with Dr. G. sounds like it was time well spent.  Nice to hear that the resident was so thorough and curious...hopefully a good sign that neurologists are getting good training these days when it comes to being patient-focused!

I hope the amantadine helps alleviate your fatigue.  When I first read that part of your post, I was a little concerned that he would prescribe this so readily without first thoroughly reviewing your other meds with you, but then I saw that you had written them down for him (great idea) so it should be safe to assume he took these other meds into account and had no concerns about contraindications.

Did you get your lab req for the Tegretol?
Did you get a copy of his last report and a commitment to send you his report of yesterday's appt?
Questions, questions!!

Re: DMD's, I still so curious (like everyone else here!) as to why he has not prescribed these for you.  It's impossible to know what is in his head, but in my opinion I really do NOT believe it is a cost issue, esp when you point out that you told him you have supplemental coverage with Great West Life.  There is NO benefit to him to save insurers' money, especially that which is in no way tied to public funding.  The costs are up to half of what they are for these same meds in the U.S., and with your supplemental coverage paid by your spouse's employer, it sounds like these are affordable for you.  

(as a related aside---> if you recall, when I was dx'ed with RRMS, I wanted to start a DMD immediately; the clinic was reluctant to start me until my application with the provincial program was approved, even though like you I also have private supplemental coverage which would cover these meds. I did not mind paying the 10% co-pay while I awaited approval for the other program.  When I explained to my neuro my concern about the time lag (2 months) to await approval from the advisory panel, he had said like the other provinces, we have an excellent program in Alberta and they want their patients to fully utilize and benefit from it.  If their objective was to keep MS patients OUT Of this program, they would encourage coverage by any private plans first, and only provide the public program as a last resort or at least make it needs-[income] based, which it is not.).  

You said you had called GWL and they told you all of the first line DMD's are covered; what about the more aggressive meds (novantrone etc)?  I think most if not all of these are considered experimental for SPMS, so perhaps they are not covered by GWL, however why not ask and know for sure, for future reference.

As for the publicly supported program administered through AB Blue Cross, I had another look at the guidelines, and Betaseron IS approved for treatment of SPMS.  

The criteria is:

- have a diagnosis of secondary progressive multiple sclerosis with relapses:
• have had at least two attacks/exacerbations of MS during the previous two years.
• have an EDSS score of less than or equal to 5.5.

Contraindications:

[PastorDan]

Rena, I am happy to hear that your appt. went well; somewhere on here I mentioned my experience from yesterday, which was also more than I expected and less than I'd hoped for, but still my best neuro visit yet.

Gg, I know you know that fishing with Dad isn't about the fish. :>)  Hope you enjoyed that hors d'oeuvre.

[Guitar_grrrl]

I'm glad you had some positive response and attention, today!  You certainly deserve it!

I thought of you last week when I went fishing with my Dad.  Totally skunked!  ONE black bass for 3 days work!  Made a nice hors d'oeuvre for us, though!

Let's hope some progress toward answers continues.  What a long, strange trip...

Cheers,
Guitar_grrrl

[Lulu54]

Hey Rena, I'm just doing a quick checkin and am glad to read your update. However, I am frustrated that the topic of DMD's did not come up - it must be the cost of them there that is keeping this topic away.  

I hope you get a good night's rest and don't hesitate to call the Dr. if you have any change at all.... he said to call, right?

be well,
Lulu