A problem for me and not knowing what I shoud do....

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/13/2008 11:27 AM (GMT -7)   
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.
 
 
thanks
 
kiera
 
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.
 
Kiera


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/13/2008 1:36 PM (GMT -7)   
Kiera said...
 
 
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.
 
**Uppity here** Well, that's exactly what I'm talking about. No, you  CAN'T really "be in an exacerbation for 6 months".  What I think REALLY is happening is that you have had an exacerbation, it has "gone into remission", and what you're dealing with is residual -- continuing but "left over" problems.  They WON'T go away, they won't go into remission, they're there, and will aways be there. You have to figure out how to either treat them with meds, or "put up with" them, depending on just how debilitating they are, and how high or low your tolerance for pain and discomfort is.
 
You CAN have a series of flares...or exacerbations (same thing)...each of which comes (the symptoms greatly intensify, maybe new disability occurs), and then recedes (but not ENTIRELY), leaving disability (symptoms) behind.  That might also be what is happening.
 
Or WORSE CASE scenario -- you could have chronic-progressive MS, or worse yet, progressive MS...but it really doesn't sound like that to me. If you had either of those, you'd be MUCH worse off, and it would be MUCH clearer to your doctor, what is going on.

 
 
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.
 
***Uppity here. I think you're quite right to be in to0uch with your gp and neuro to press them on this. There is no reason why you can't take the neurontin. It WON'T "worsen" your MS, it may well relieve your pain and discomforte.  It's not "dangerous"..I don't know why the doctor would tell you that!
 
Maybe YOU would have better luck calling the neuro you saw at the "specialty clinic" and see if they'll respond more quickly to YOU than to your doctor? And then press them to call your doctor?

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/13/2008 3:34 PM (GMT -7)   
Ok ms. uppity im gonna hug you some day lol..it wont be like aunt bertha i promise!

lol...gawd, ive been crying fo r 2 straight days..i know thats not helping anything...

Just from what ive seen on my papers they do tend to put sever ms..but always r and r also. I really agree with your last one about id be worse off.

The clinic also said that..because there would be more disability. I think thats why they tried to explain it was more painful but some of those nerves would die eventually...

I also know ive progresseed as far as its in my right eye now (the on)....but milder and less often.

I would think the first one if i didnt have those great days (still with numbness/heat sensitivity and some things that dont move when i wake up)...but alot of them and ohhhhhhhhh what a blessing they were and hopefully ill see those again.

They are so good its a shame!....there are symptoms but i can take a twist or two of the ankle and some tingling and such....with a lil twitching and etc so on....
Its this other place im in which is like unbearable and if i look at all three of your paragraphs id say the first one also except for the quality ive seen in those "good consecutive days"

I do think ive had series of flares. When i went to the clinic i had them all printed out on different pages. Each one specific to its own...it wasnt until you expalained this a little more, that i went back and saw clumps of like 5 pages being the same symptoms just different weeks away from one another. With harder (exacs) ones in between.

I do think that just because the spasticity was so severe this time, that when it left i thought it was over. (its obviously not lol)...so .....

I guess id say im in an exac ...or this last one left such residuals Its trying to make me the incredible hulk lol.
I truly wish that id of done steroids this one time. The eyes were involved but i always compare it to the first time and if the eye isnt that bad i let the rest of my body go to ((U*(*IU.....so to speak. Hindsight is 20-20.

After we typed about this last time i think i could then see that those numerous pages of what i had thought were different attacks were really the same symptoms with weeks in between at first.......then more and then more, and yes each one brought an extra thing (at least).

A good example would be what i thought was exac number 1 and number 2

number1: profound faitgue
parathesis
bladder infection
right hand curls up and i have to straighten it with my other hand
naseua
eyes blurred with black spots in left one
woke up and my legs wouldnt move

12 days later

number 2 profound fatigue
parathesis
bladder infection
right hand curls up and now locks at elbow upon waking
migraine
blurred vision
feet felt like they were on fire
aches in muscles


These are short versions of the symptoms but you can get the idea. I guess that is why i thought each were seperate ...but looking at them all i can see....5 biggies that left things.

right now? I think im in the one that began with spasticity and its not over yet......maybe it is but i sure dont like these residuals lol.........

thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 12, 2017 6:57 PM (GMT -7)
There are a total of 2,904,620 posts in 318,774 threads.
View Active Threads


Who's Online
This forum has 158154 registered members. Please welcome our newest member, Richie222.
336 Guest(s), 13 Registered Member(s) are currently online.  Details
momto2boys, skeye, scifigal2k, Richie222, ArtAngel, darrylG, rafaeltoral, Laugh and live, mvphilly, Maverick6981, Raleighgirlie, mordant, straydog