Update from Neuro visit

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Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/29/2008 2:11 PM (GMT -6)   
My Eeg came back normal. I will do the sleep study this coming monday, and he was more than happy to prescribe the bathing cloths' that kimber had told me about (ty).
He is still upset over the rheumy who threw questions about this and i told him i was dropping off a 24urine today to show overall function is fine.
 
I explained that whole thing again and that it is non neprhotic protien spillage. He is wanting to call this Rheumy today and be nice and see if he can coax (so to speak) him to spill out of his mouth what exactly he had been thinking. He said that he and my family doctor are still upset about how he treated me. I guess im over it and have had other doctors be rather spiteful..but its nice to see some doctor's do care. He said he will call me TODAY with the answer.
 
I knew that the Clinic that diagnosed me the second time with MS..said that i was only on 1/8 of the amount i  could be on, so while there i got copies.
 
***Note about injections: he'd just returned from a conference debatiing betaseron and copaxone and their equality in longevity recent trial. They were equal he said but if the every day injections bothered me he could consider beta.. i told him No...that im glad that he shared this finding with me and that the injection is much easier to do.  I did ask which one he would take if he had MS and he said id be fine with either one after all we heard at this conference. (hope that helps someone) it did me.
 
What i wast prepared for was to look and see that they wanted me on 3800 mg of neurontin: whoahhhh now. Not happening. I have been on 4000 at first attack and you stomach stops absorbing it after that amount, but on a daily basis no more than 3, 300's quiet all of my  neuropathy type sensations.
 
The report also said i was a Mild Case based upon Disability, but to be truthful its changed even siince i saw them. I can no longer stand up, when i need to do some private area cleaning in bathroom, because of leg weakness. That isn't leaving ive noticed. But they base it on what they see the day they do actually see<<keyword you. It said no fasiculations and i have tons but again this is what they observed the day i was examined.
 
It did say that they decided mild due to lack of disability and mild lesion burden. T2 area is a new one theyve read that the last Doctor didnt see as one. Considering how many alot of people have i dont have alot. But they were very thorough on the papers with some inconsitency with what i had said to them (it happens), and did say they felt that all of the 25 attacks/flares that i felt id had, were more likely fluctuating symptoms with some true attack involved. Steroidal use was 4 times from their records. ( i only remember 3)
 
They did put fall risk none which again is not near correct. I've had 3 falls since Jan, but at the time of appt with them I had told them of only 2 that had happened the previous yr.
 
At any rate they chart what they  see, but they didnt discount my pain. They had a seperate section discussing the various  reason's and things such as burning, hand cramping, shooting pains, headaches, migratory sensations that would be considered very uncomfotable and needed addressed as indicated by the 3600 neurontin.
 
I remember at the appt them telling me the "good news" was that alot of my pain would subside, i dont think they think all of this is residual but some are nerves that are reacting like a neuropathy would and they said some of those nerves would die and less pain would be present. They are right as far as shooting ones. They were horrid before and now alot milder but can be a constant mild dependant upon stress, heat, etc..
Of course i know my residual's. Rigidity and contracture in right knee. Ankle turns, spasticity in all groups when flared, the left eye being prominent but now the right has become involved, numbness, tingling, itching, aches and the heavy feelings in legs and the weak achey legs. Some days not as bad and only some of these are bothering me.
 
They had put something also suggesting that vitamin d might relieve some of my pain.
Along with getting some levels correct in my blood: folic acid etc.
 
So, all in all it was a good visit. I got to accept that Im glad Im on copaxone, that I wont have to worry over hygiene as much, that i def need to destress some...Oh and a good note in there was i was negative for psychiatric...the reason i say that is how often some doctors tend to let you think its all in ur mind.
Eeg was good so maybe sleep study will let me know more. I confessed to him about my resistance to the opiates but that taking neurontin was not going to suffice all of the pain but at the same time withholding it is only a temptation to take the optiate. He agreed and thought that once we up the neurontin we will be able to lower the other.
 
 
thanks for reading and i hope that the recent conference he attended in Fla about this new trial will help some feel good on the injection they are on. Or help some not to be afraid if they do have to change medicines.
 
thanks
kiera
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 2/29/2008 2:40 PM (GMT -6)   
It does sound like you had a good visit, with a doctor who really is ready to work with you. I'm so glad!
Now we'll look forward to that sleep study, and hope you get some more answers there.

Do keep track of those things like falls and such, and remember to tell him at your next visit!
...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 2/29/2008 3:02 PM (GMT -6)   
Yes i feel so relieved. Just having vaidatition, concern and an informative doctor made so much difference in my symptoms today even. They are there but milder. Stress is such a big one for me. For Ms people always. I've gotten way to much and really it made me realize today what it felt like to be treated properly.

I also hope the sleep study does reveal the cause. I haven't had the comanap thing for about 3 weeks. Im not sure why, i cannot find anything that i add or take away from it seem to bring it on or delay it when it decides to hit. I know i cant be sleeping good now though. his mirror showed the bags under my eyes lol. A husband who lost his mom recently and was tossin and thumping me at night, now has accepted having to take Paxil (thank God)...he was snoring/talking outloud in the bed also, wiht a child im sometimes probably over concerned about. He's a great child.

I think i might print some lil signs to put up on fridge/door etc..that are reminders of Peace::tranquility::destress!!!!!! lol..so that when im experiencing so much I can remember to chill out and let things go for the time.
Try to ease up and pace better. Easier said than done as you know but today really helped me to see. I feel all that i felt before his visit but..its all so quieted and lowgrade. Thats good!!!!!

Thank you so very much for your support everyone and kimber about the bathing cloths and Ms. uppity you have been a life preserver at times for me through this. I do love the mattress and i'm glad it made me get a new comforter and sheets because they themselves are so much more comfy!


thanks again!

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


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 2/29/2008 6:13 PM (GMT -6)   
Kiera,
 
Thanks for posting.  The information on meds was very helpful.  I am sort of confused on one thing.  You said you cannot stand up due to leg weakness.  Yikes!!!!  Are you walking??? I know these may be personal quesions but I was just wondering.  You don't have to answer if you are uncomfortable. 
 
Love and prayers,
Gretchen       co-moderator MS board       diagnosed with MS July 2006


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/29/2008 7:32 PM (GMT -6)   
Gretchen, I think what she was saying was that she was having trouble standing at the bathroom sink, for example. That can be a real challenge. I found for a long time when I was on my feet walking, that so long as I was *moving*, I was OK..but standing still..like standing in line at a check-out, for example...I couldn't stand still. Balance issues would be a real challenge, and my legs would just *ache*. It was always troubling because I would walk OK (well, with crutches or a cane) but standing still was SO difficult. Anyway...

that's how *I* read it! :)
...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 2/29/2008 9:01 PM (GMT -6)   
Hi,
 
After i posted i realized i hadn't said why i couldnt stand. No Gretchen i dont mean standing as far as trouble standing up. Its when you bend over to clean your private area with treated wipes i have to try to prevent Uti's and I have to Cath myself when im in flares for residual urine, ...to stand(having to sort of squat a bit to do both) and try and do these two things are no longer as good as last year. My legs are weak and begin to shake and want to give out. It's a residual for sure and a progression since last year. I had no problems at all with legs, now im finding myself having to sit from sheer jelly legs and shaking legs.
 
Also Ms uppity your so right about the standing. What the heck is it about merely standing that feels more painful or achey than if you ran? lol. Wow it is very hard to stand for long in one place, or in a line as you've put. I  also now have that. This time last year i did not. So yes that has also shown iteslf in the bathroom business at the sink and things. (im glad you knew what i was saying on this one).
 
I mentioned a few residual's and i suppose these are markers of progression. The same as last year i could target shoot with that same gun without lowering my arms but maybe once. Still a little shaky but not near visible to others as now. I now have arm weakness that prevents me from shooting more than 2 shots without dropping arms. My fingers even become so jellyish that its hard to pull the trigger, although its not a very hard thing for others. This time last year? I had no prob with that.
 
So, I am saying there is progression. I know that. I can see that shooting guns from last year to this year was very much reiance on compensation, my arms jerked so bad, i'd see the red then it  would leave then it would come back to aim and leave. So i decided to "compensate" and fire while it  left, hoping it then would fire when jerking back over to the red in my site. It worked!
Nevertheless i see the difference. Alot.
 
I simply cant stand for long in one place. Last year? I could. (i do need to note these for my neuro) as they are very obvious changes and they arent things that are ever getting better.
 
It's just how much i have changed in one year. So there were attacks. Not all were, but some definitely were and alot of them I remained home and held on for dear life through them. Just to keep from bothering my husband or to chance an encounter with another odd doctor.
Things have changed alot for me so i feel now I will be able to go in the next time its bad with NEW symptoms and obvious exac. And will have progressions noted.
 
Other things i can look back on that i could do last year that i can no longer do are. Carry the jugs of milk into the house. If i do , i will pay for that with my spine problem. I find my husband gets the groceries alot more often than Id like it to be. Before this he never did.
 
So i think when i say i know my residuals i leave out things like leg weakness that has not/will probably not improve.
Inability to hold something up for very long, has changed alot since last year, even if it were hard and shaky last year its sometimes a no go now.
Hyeine had declined (lowering head...lol im ok, i feel grateful for that thread)
Driving, besides the sleepy thing, i find that the feet have become somethng I now compensate for alot.
I always open my screen door now on the handle with my hands, while my left foot pushes it open ( a compensation i found id been doing without knowing it)
the forever collapsable thumb is here to stay.
no sense trying to bite my nails like last year, that results in a type of intention cramp (making new terms as i go lol)
the contracture
the spasticity has multipliled vs last year greatly and yes that was an attack , it had many new symptoms and the severity of the others were to the degree that i couldnnt project my voice loud enough for anyone to hear.
The voice-lower/hoarse and not leaving. During flare its almost inaudible but i try to get it out.
Cognition-there is no clarity or recent recall during the flares at all. I feel scared because i dont even seem to know what month it is , but afterward sharpness returns (you notice my errors...spelling etc).
Sorry , im sure im skipping some. It really brought it to my attn when shooting the guns. I remembered last year and the difference was marked.
Same with last year and the standing...now its sit down to cath or wipe..bending over to do these things make my legs want to give out.
 
* Just looking at what ive typed i do realize I need to make 1 list other than my symptoms as i go , and that is one that just lists the things i could do last year that i cannot do the same or at all this year. That might help them chart progression?
 
thanks all, I dont think ill fall Gretchen , thank you for your concern. I do need the walker for spasticity for future though.
 
 
I hope your both doing well yeah   
kiera
P.S. I dont know if you guys remember what they had told me? At the clinic? They told me and my husband that my future looked good and they didnt feel id ever be in a wheelchair. very bold statement given the nature of this disease and my legs growing less stable.


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

Post Edited (Kiera) : 2/29/2008 8:13:23 PM (GMT-7)


anniebooboo
Regular Member


Date Joined Jun 2007
Total Posts : 53
   Posted 3/1/2008 5:23 AM (GMT -6)   
Very interesting about the legs and difficulty standing still. I, too, have this, but was never able to articulate it as such. Funny that I can walk for fitness but have trouble standing at the sink or kitchen bench etc. Hard to describe the utter exhaustion I experience in one leg! Stairs kill me too though, but I seem to collapse (or nearly) a few paces after I have reached the top and plateaud out. Too weird.
Annie

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 3/1/2008 6:29 AM (GMT -6)   
Sometimes i think (and that doesnt mean much haha) that when we are moving the compensation from other body parts are working to help those over tired legs. When we are standing still there isnt that same compensation so we might try to shift from leg to leg only to find neither wants to take the burden.

I guess leg/arm weakness have definitely been left behing. Now when they do the neuro exam and i need to push UP against them i seem to do fine..go figure?...crazy.


thanks

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

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