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diagnosis today.... diagnosis today....

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Unread 07-25-2005, 09:45 PM
diagnosis today....

well even with my increased dose of tegretol the pain at work today just was too much..so I called and left a message at the neuro's office...at first I was very discouraged because when his assistant called back she said she would pass the message on but that they were going to be on holidays until Aug 29 and that was the soonest I could see him but she would see if he could call me back

well much to my amazement he did call back and listened to what had been happening and is now 100% sure that I have trigeminal neuralgia..he is referring me to a neurosurgeon, the only one in my area that treats this so it could be up to 6mths before I get in...he is also adding Dilantin at bedtime on top of my tegretol during the day in hopes that it will help control the pain...so now I'm on two anti-seizure meds...I will still be having the brain angiogram which will help the neurosurgeon see where he needs to operate but even if it doesn't he says that this doctor will be able to fix me and most people have really good relief after....it's just making it until then.

he said even though alot of people with MS get this he says there is only a 20% chance I might have MS....and to just try and hang in there and he would see me on the 29th.....I'm beginning to realize it may be impossible to work until I see this new doc....but it's a slow realization for me because it will be very hard financially (no partner, no savings) and I could be off for 6mths I have no idea....

to top it off I have the bladder fulguration and distension in Sept/Oct...which will knock me down for a good 3-4wks...

so it looks like I may be going on sick leave it scares me to death and I still haven't completely accepted it as I will surely lose my job in the long run bt the upside is we have a diagnosis.....now we'll see how the dilantin works...just took it a half hour ago with my allergies ya just never know hopefully it just helps with the pain and that's that!

thanks for listening girls and if anyone else has this trigeminal neuralgia I'd love to hear from you, I know Dany you had it is there anyone else out there?

oooh feeling a wee bit woosy think i"ll sign off for now...'s
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Unread 07-25-2005, 11:37 PM
diagnosis today....

You are in my thoughts and 's always!

's and

Unread 07-26-2005, 01:35 AM
diagnosis today....

Im so sorry you are going thru this..but and I am a fine one to say this as i am bad to mistreat myself as well..but honey there is nothing more important than your health, not money for sure..there will be a way..so hang in there..do what you have too..look into some state aids if you have too but don't let your health suffer for the sake of finances..we can lost our homes, our cars, everything, but we can get them back, if we lose our health..its pretty much gone..prayers for strenght and courage going out for you.
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Unread 07-26-2005, 10:50 AM
diagnosis today....


I am shocked and amazed that you are able to continue working with all that you are going through. I do hope you have some friends or family you can lean on in your time of need so that you can get some much needed HEALING time.

Lots of s for you and, of course, you remain in my
Unread 07-26-2005, 11:58 AM
diagnosis today....

thanks so much you guys on days like this it helps immensely just to know someone is out there that cares....all my family is back east and my best friend is an hour and a half away and honestly I just don't think people get it anyways......

had an allergic reaction to the dilantin last night hives and wheezing oh joy and a huge hangover from it this morning....so that's out I believe there is one more drug to try called baclofen or lioresel or something like that I"ll ask my GP about tomorrow night.....

nothing is really sinking in today all I know is I feel awful and can't believe I have to see a neurosurgeon
Unread 07-27-2005, 05:28 AM
diagnosis today....

Awww Gidge

You've been thru so much in the past couple of years sweetie, I hate to see you going thru so much more. I wish I could come and take care of you so you wouldn't have to worry.

Are there any steps you can take now to prepare for your down time? Pay things in advance? Make payment arrangements for the future? Start any paperwork now for the time you'll be out? Call and ask for exstensions?

I sure wish there was something I could do honey....I hope they can find a med that works soon to help you thru the time your waiting..I also can't believe your still working thru all of this...your much stronger than I am. I couldn't do it. I don't know where you get your strength.

Please know we'er here for you...and keep us posted.

Unread 07-27-2005, 12:14 PM
diagnosis today....

well if life weren't interesting enough with all this going on I just got the call from my urologist's office and they have booked my bladder surgery for Sept 16th!! It wasn't supposed to happen until Oct/Nov I thought........yipes!

thanks for all the hugs girls I see my GP tonight to ask about another med to try and to ask about being off .....I am so scared about all of this I can't tell you!
Unread 07-27-2005, 03:44 PM
diagnosis today....

Good luck with your gp tonight. I am sure it must be very scarey to think about not working, but it may be something that needs to be done so that you can get to feeling better. Some time off and having the time to work with your doctors may be just what you need.

As always, you're in my ers and I'm sending many s
Unread 08-02-2005, 12:49 AM
diagnosis today....

sorry I haven't replied I've sort of been in shock trying to deal with the idea of being off on sick leave for who knows how long and where the money is going to come from to deal with that being single and all

My GP prescribed something called Baclofen for me to try since the Dilantin was a no go...didn't help and gave me a incredible tightness in my chest so I have since discontinued it....I told him everything the neurologist said and told him that I was off on holidays this week (right now) and that I would come and see him after that week and if being off makes me able to deal with this that much easier then I didn't see any other option other then going on sick leave, especially since it looks like we'll be increasing my tegretol level due to lack of anything else to take and I"m barely staying awake on this dose, not to mention the pain etc....

then I asked him if going on sick leave sounded reasonable to him and he said "honestly I don't know what else you would do you have tried absolutely everything else".....so the deal is I go back this Fri and we'll decide what to do but I don't think he gets that it might be months and months before I see the neurosurgeon....not to mention the bladder procedure in Sept...oh yeah when I told him that I got a date for that he said "oh so you'll have to arrange for time off around that as well" so I don't know if he "gets it" yet that I"m unable to function until we can fix me and get me off these anti=seizure meds!!

I don't know what to say to him, how to put it.....I mean a month isn't going to do it I won't even have seen the neurologist or had my bladder surgery in a month and who knows how long before I see the neurosurgeon....

anyone that has been through this I would welcome their advise...I'm lost here.........thanks girls!
Unread 08-02-2005, 09:25 AM
diagnosis today....

If you have a journal, maybe he could read a week of it and see what your quality of life is. If you don't have a journal, perhaps print out some of your posts (and our responses). Most men are better at taking information in visually than through their ears. Give him something to read and you might be taken more seriously than just telling him. Besides, anything you are willing to put in writing is naturally going to be taken more seriously than something you say. Its just human nature ... well it is in Texas, Canada might be a whole different world.

Best wishes!!!


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