It's me again. Sometimes I get through typing here and feel that i've assumed you know what I'm referring to from past post's and realize that maybe you dont. My bad.
When i went to the Clinic they pointed out that i did have a painful form due to the meylin more than lesions... and they said the good news was that as some of these nerves stopped misfiring and causing alot of pain, they would die. (not necessarily nerves that control function) and my pain would ease.
They pointed out (not me) that they wanted to help resolve my symptoms. This was a first for a doctor (head neuro of the institute) to be the one to bring up my pain. He asked if i was aware that i was only on 1/8 of the medicine that i should/could take, referring to neurontin. I was on 2x per day. I cant imagine that only being an 1/8 but maybe he was considering another medicine in there.
He said we will fax all of this to your local neuro so he can get you on the right amount.
I was told that he felt these were not seperate attacks but i was in relapse with good days. Miss Uppity i do not mean to ask a stupid quesiton but really what does that mean? Can i really be in an exacerbation for this long? 6 months...or does that mean im in a relapse of different flares? Im confused on that.
At any rate i return here, go to the rheumy for the knee problem i was having. He brings up suspicion of Cic
(circulating immune complex) the tests i had ruled it out, but...
The problem then became that i saw my local neuro who recieve and agreed with Cleveland Clinic, but when he heard about the Cic, even though the tests came back negative he "reduced" my neurontin to 1 per day. He said " i dont understand why this doctor did this, neurontin is a very benign medicine unless you have renal problems". I reminded him that I had told him at first visit that Id been told Id had a kidney problem that was from previous bad infection which was supposed to be resolved. And is , accept that i have protien and blood. The kidney doctor just assured me at the time that the insult had thinned the membrane and thats why it shows on my tests and not to worrry.
So here i have cleveland wishing my symptoms to be dealt with. A local neuro with good intentions and agrees with them. But that doctor seems to of put a question mark in my local neuro's head also. When i spoke with him he said "Im trying to call him kiera, and he wont return my calls, but i assure you that your gp and I both feel strongly about this, he needs to tell us what he thinks this was, what he did wasnt right, so for now take 1 neurontin.
So, here I am..left in the pain without the medicine i need. More confusing to me is this. If that other doctor had been right he told me neurontin would make my condition worse (so this is very important), but im getting told my tests show hes wrong but obviously until my local neuro feels hes free to increase it, he cant. I as a person feel that ok....i dont even want to take 1 if its going to worsen me, but if its been disproved as they say then why arent we doing the increase? Its clear that its caution but there are no other tests pending.
So im trying to reach both my gp and my neuro to get this finalized.
I have amazing relief with neurontin but am now afraid to take the 1. Either i can take it or i cant.
Im making calls today to try and get my neuro and my gp to end this guessing game. Either even 1 is dangerous or I can indeed take the appropriate amount as cleveland said.
Its got me so confused at this point that the emotional side of me is being spent.
I hope this made some sense..........im not sure , my cognition right now isnt the best.
p.s. beng "allowed" to take the neurontin would help me decide better if i can adjust and avoid taking what the spinal rehab wants me to take (oxy).
Every day brings us closer to what we reach for .........in all things.