Aa
They still don't have a clue but I got em' thinking!!
Well I went to my g.p. again today (the same one that wouldn't give me anything for my pain last week because she felt it would defeat the purpose of weaning me off of the Tegretol and Neurontin) and what a different appointment I had today...maybe because she didn't have PMS or maybe because my hubby went in with me...who knows?
Anyway, my tegretol level which should be between 25 and 50 was 51 last time I was tested...this time after 2 weeks of a lower dosage my level is at 31...perfect!! However, the pain is worse because I am on less meds of course.
I called my insurance company to see if they would cover acupuncture and the answer was no so the g.p. said that is out of the question because it is just too expensive.
I then reminded my g.p. that my neuro had suggested a small dose of Lyrica instead of the neurontin and I couldn't believe it but she agreed! I had a really bad episode with a dosage of 75mg tid last year where I couldn't speak, couldn't see, so it really scared me off. However, I am going to try 75mg/day in place of my evening Neurontin dose and see if it helps. The g.p. said that I do have room to play around with these to find what works as this is such a low dose. At least she is giving me the opportunity to try to make my life tolerable! Last week she told me to live with it for cryin' out loud!!
I made her aware of the really bad numbness that I am having on the whole left side of my face and she said that it was probably due to the trigeminal neuralgia...I calmly let her know that I don't have trigeminal neuralgia, I have Paratrigeminal Neuralgia and they are two totally different things. I asked her if she has looked into Paratrigeminal Neuralgia at all and she said she hadn't had a chance. I said that if she was still going to be my g.p. that this was imperative and the best person she could get the information from is the neurologist so she said that she will look into it in the next two weeks.
She is also going to make an appointment with a pulmonologist, which she was supposed to do last week but didn't because she thinks my lung problem is because of smoking BUT I DON"T! And neither does the fellow that did the lung function test and I am sticking with him. I feel that if there was a problem it would have reared it's ugly little head last July when I quit but no, it didn't show up until a few weeks ago. I am having a lot of breathing difficulty and a lot of pain in my right lung area in my back every morning...just as well to have it checked I think!
Lastly, I asked my g.p. if I was on the same dosage of meds for two months, when then did the "symptoms" come and go if they were caused by the meds? She said she doesn't know and I appreciate her honesty. I also asked her if the neurologist feels that all the symptoms I have been having are caused by the meds and she responded that the Neurologist thinks that the amount of meds that I had in my systems were toxic and that it will take a while to clear the remnants out of my system and in the meantime I still require some sort of pain killers. This makes it very difficult to discern what exactly is going on. She is going to be in contact with my neurologist regarding my case in the next week and I have an appointment with her again in two weeks. She is hoping that my neurologist may have some more answers for me but she said that there are no promises.
I can be happy with that for now...at least they are giving me something to work with and they are admitting that they just don't know what the he** is going on with me. It was the fact that they would not admit that they didn't know...they just tried to humor me and in one case made me suffer terribly for a whole week! I feel now that they are taking my illness, whatever it may be, seriously!
I gave my g.p. my forms for her to fill out and send to the government for application for disability insurance and she took them from me and stated that yes, you have every right to this and I will have them filled out and sent in right away for you. What a relief that was! I will be sending in my forms tomorrow and crossing my fingers...sure could use the money after being unemployed for a year!
It will be 1 year on February 14th since I took my first note in to my employer stating that I would be off of work for a few weeks due to medical reasons and my employer asked for my resignation...seems like an eternity ago now. I did resign by the way but I rescinded my resignation the next day and the fight was on between myself and the boss. She won but I bet she is still the most unhappy, uncaring, bitter old bag she always was and always will be and I still can probably understand better than most still working there why her husband left...HE WAS SCARED TO DEATH OF THE BATTLEAXE!!! ha ha ha
Guess that is all for now...not looking forward to using the Lyrica after the last time but I am willing to try it if it will help with the pain.. Will let ya know how it goes!
Lots of Hugs,
Rena705
Anyway, my tegretol level which should be between 25 and 50 was 51 last time I was tested...this time after 2 weeks of a lower dosage my level is at 31...perfect!! However, the pain is worse because I am on less meds of course.
I called my insurance company to see if they would cover acupuncture and the answer was no so the g.p. said that is out of the question because it is just too expensive.
I then reminded my g.p. that my neuro had suggested a small dose of Lyrica instead of the neurontin and I couldn't believe it but she agreed! I had a really bad episode with a dosage of 75mg tid last year where I couldn't speak, couldn't see, so it really scared me off. However, I am going to try 75mg/day in place of my evening Neurontin dose and see if it helps. The g.p. said that I do have room to play around with these to find what works as this is such a low dose. At least she is giving me the opportunity to try to make my life tolerable! Last week she told me to live with it for cryin' out loud!!
I made her aware of the really bad numbness that I am having on the whole left side of my face and she said that it was probably due to the trigeminal neuralgia...I calmly let her know that I don't have trigeminal neuralgia, I have Paratrigeminal Neuralgia and they are two totally different things. I asked her if she has looked into Paratrigeminal Neuralgia at all and she said she hadn't had a chance. I said that if she was still going to be my g.p. that this was imperative and the best person she could get the information from is the neurologist so she said that she will look into it in the next two weeks.
She is also going to make an appointment with a pulmonologist, which she was supposed to do last week but didn't because she thinks my lung problem is because of smoking BUT I DON"T! And neither does the fellow that did the lung function test and I am sticking with him. I feel that if there was a problem it would have reared it's ugly little head last July when I quit but no, it didn't show up until a few weeks ago. I am having a lot of breathing difficulty and a lot of pain in my right lung area in my back every morning...just as well to have it checked I think!
Lastly, I asked my g.p. if I was on the same dosage of meds for two months, when then did the "symptoms" come and go if they were caused by the meds? She said she doesn't know and I appreciate her honesty. I also asked her if the neurologist feels that all the symptoms I have been having are caused by the meds and she responded that the Neurologist thinks that the amount of meds that I had in my systems were toxic and that it will take a while to clear the remnants out of my system and in the meantime I still require some sort of pain killers. This makes it very difficult to discern what exactly is going on. She is going to be in contact with my neurologist regarding my case in the next week and I have an appointment with her again in two weeks. She is hoping that my neurologist may have some more answers for me but she said that there are no promises.
I can be happy with that for now...at least they are giving me something to work with and they are admitting that they just don't know what the he** is going on with me. It was the fact that they would not admit that they didn't know...they just tried to humor me and in one case made me suffer terribly for a whole week! I feel now that they are taking my illness, whatever it may be, seriously!
I gave my g.p. my forms for her to fill out and send to the government for application for disability insurance and she took them from me and stated that yes, you have every right to this and I will have them filled out and sent in right away for you. What a relief that was! I will be sending in my forms tomorrow and crossing my fingers...sure could use the money after being unemployed for a year!
It will be 1 year on February 14th since I took my first note in to my employer stating that I would be off of work for a few weeks due to medical reasons and my employer asked for my resignation...seems like an eternity ago now. I did resign by the way but I rescinded my resignation the next day and the fight was on between myself and the boss. She won but I bet she is still the most unhappy, uncaring, bitter old bag she always was and always will be and I still can probably understand better than most still working there why her husband left...HE WAS SCARED TO DEATH OF THE BATTLEAXE!!! ha ha ha
Guess that is all for now...not looking forward to using the Lyrica after the last time but I am willing to try it if it will help with the pain.. Will let ya know how it goes!
Lots of Hugs,
Rena705
Super-Sally - The problem with PN is that there is only one or two pages about it and I am hoping that being a physician she might have more access to more information on it...I have tried and tried to find other people with it and even wrote to a lot of the physicians that have written these articles on PN and they have been no help whatsoever! Very frustrating!
T-lynn - thank you for taking the time to respond to my post...don't you think you have enough on your own plate right now you silly girl! I do appreciate it honey and I sure hope that things start to fall into place for you and your family as well!
LLWB - Thank you for responding...the dr. stated that she only had the 75mg capsules and I tried the 1st one last night...so far so good but it took a few more than that to make me psycho last time so just have to keep my fingers crossed. I did wake up with one he** of an ice pick in my head this morning though, it's obviously not enough at night...hmmm, have to think about this for a while...
T-lynn - thank you for taking the time to respond to my post...don't you think you have enough on your own plate right now you silly girl! I do appreciate it honey and I sure hope that things start to fall into place for you and your family as well!
LLWB - Thank you for responding...the dr. stated that she only had the 75mg capsules and I tried the 1st one last night...so far so good but it took a few more than that to make me psycho last time so just have to keep my fingers crossed. I did wake up with one he** of an ice pick in my head this morning though, it's obviously not enough at night...hmmm, have to think about this for a while...
She could have given you 50mg capsules, that is what my dr started me on. Every week he told me to raise it 50mg, morning and night. I'm now at 100mg am pm, and doing okay..maybe you could call and ask if she has any samples of 50's. So far my dr is giving me free samples to see if they work. Good luck, hope you can tolerate it this time.
YOU ROCK GIRL, YOU STOOD UP FOR YOURSELF,YOU ASK QUESTIONS AND YOU MAY HAVE NO ANSWERS BUT YOU ARE GETTING HELP,YOUR GP IS STARTING TO LISTEN TO YOU.
THE LOW DOSE LYRICA MAY HELP,QUIX IS RIGHT ABOUT STARTING OUT ON A LITTLE BIT OF THE LYRICA AND SEE HOW YOUR BODY ADJUST.
AS FAR AS YOUR OLD BOSS , ITS HER LOSS,I WISH YOU THE BEST ON GETTING YOUR DISABILITY INSURANCE.
T
THE LOW DOSE LYRICA MAY HELP,QUIX IS RIGHT ABOUT STARTING OUT ON A LITTLE BIT OF THE LYRICA AND SEE HOW YOUR BODY ADJUST.
AS FAR AS YOUR OLD BOSS , ITS HER LOSS,I WISH YOU THE BEST ON GETTING YOUR DISABILITY INSURANCE.
T
Great on your latest appointment. Hope. At least she does seem willing to work with you. And drs are only human and have on and off days. My endo, who I think is really great, does have his off days.... but overall.
How about you give your Dr. some info about the PN. Is there a 1 page summary - maybe off a medical site on-line....Help her to learn about it - they can be really busy too.
Keep at it Girl!
Sally
How about you give your Dr. some info about the PN. Is there a 1 page summary - maybe off a medical site on-line....Help her to learn about it - they can be really busy too.
Keep at it Girl!
Sally
Great on your latest appointment. Hope. At least she does seem willing to work with you. And drs are only human and have on and off days. My endo, who I think is really great, does have his off days.... but overall.
How about you give your Dr. some info about the PN. Is there a 1 page summary - maybe off a medical site on-line....Help her to learn about it - they can be really busy too.
Keep at it Girl!
Sally
How about you give your Dr. some info about the PN. Is there a 1 page summary - maybe off a medical site on-line....Help her to learn about it - they can be really busy too.
Keep at it Girl!
Sally
The dr. was concerned about that because they are capsules but she said to try 1 at night so that if there are side effects I would sleep through the worst of them...I am willing to try it and I will know right away what the side effects feel like from the last time and if I can't do it I won't.
I think what scares me more than taking the Lyrica is having to explain over and over to my g.p. what PN is and how it affects me! I will give her this last chance to get it together and learn about this and if she doesn't bother, I won't bother seeing her again! I need a doctor that knows more about a syndrome that I have than I do don't you think?
I think what scares me more than taking the Lyrica is having to explain over and over to my g.p. what PN is and how it affects me! I will give her this last chance to get it together and learn about this and if she doesn't bother, I won't bother seeing her again! I need a doctor that knows more about a syndrome that I have than I do don't you think?
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