advertisement
Reply
 
Thread Tools Display Modes
Old 04-03-2008, 04:50 AM #11
weegot5kiz's Avatar
weegot5kiz weegot5kiz is offline
Elder Member
 
Join Date: Jan 2008
Posts: 11,805
15 yr Member
weegot5kiz weegot5kiz is offline
Elder Member
weegot5kiz's Avatar
 
Join Date: Jan 2008
Posts: 11,805
15 yr Member
Default

this spinal one has been coming on for some time now, about a yr or more, and the numbness in my right foot and hand have been coming well in the hand coming and going the foot been constant the numbness I have noticed off and on for about 7 maybe 8 months on right side and have made mention in some post at the other site.

I have had 4 taps and 5 mris all pos for ms 3 by this doc 1 each by 2 second docs yes i got a few opinions on this every time its pos, the feeling i got from the neuro was his worries about if the C was doing its job I only have two years of mris to work with and have been on c almost that time so he said as far as how fast it is progressing he isnt sure

because of the amount of flair ups, and attacks i have had in the past 9 yrs and now he is trying to judge how much more would there of been with out the C and thinks that maybe not much diff my worry is i felt comfortable with C i didnt like the sounds of those others and am not sure what direction to start looking at , sorry i dont have the tech terms for everything

I will say b4 using C he did try to sway me and i dont recall what it was once a week injection I think it was B he felt this was better for my MS bestron or bextron i think i have to look it up again anyway it do seem like i am good for 2- 3 attacks a yr thats how its been for a long time now, so even I have question C and did so months ago because I am still having them at same pace,

so even now i am more confused then i was ten minutes ago when i started typing lol great, some one i know has a sister with MS and she swears by the A one I do believe a med change is in the making here. even he has been looking for some type of improvement on my left side and their isnt any . I wish i knew what to think oh goodie look at the time think I will take steroids now get a jump on the day and maybe by this time tonight i can sleep

cherie I read that page thank you

{{{{{annie}}}}} thanks for the hugs another day for the drawing annie?

AV thank you too

sometimes i just cant get over how nice this site can really be becaue of the folks that are involved, oh how i wish i could go back in time with my sons seizures and find this site i foundchat rooms back then but nothing like this site
__________________

.


History doesn't repeat itself, but it does rhyme.............................Mark Twain



.
.......
.
...
.

Last edited by weegot5kiz; 04-03-2008 at 05:36 AM.
weegot5kiz is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Koala77 (04-03-2008)

advertisement
Old 04-03-2008, 05:26 AM #12
Snoopy's Avatar
Snoopy Snoopy is offline
Magnate
 
Join Date: Sep 2006
Posts: 2,280
15 yr Member
Snoopy Snoopy is offline
Magnate
Snoopy's Avatar
 
Join Date: Sep 2006
Posts: 2,280
15 yr Member
Default

Quote:
Originally Posted by weegot5kiz View Post
this last attack has thrown me for a loop. I kind of was under the impression it hit one side or the other rarely both,
Frank, I am so sorry your having a relapse (relapse is easier to spell than exacerbation ).

Exacebations can just involve one side or the other but there are people who have exacerbations that affect both sides.

My exacerbations are typically equal opportunity - I get hit on both sides. Apparently my MS doesn't like to play favorites

I hope you start to do better soon
__________________
Dx RRMS 1984
Snoopy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
weegot5kiz (04-03-2008)
Old 04-03-2008, 08:44 AM #13
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

Hi Frank,

As far as the headaches, I do think that there is something to that, particularly with regard to spinal lesions. We had a little bit of a brainstorming session on that idea in the attached thread:

http://neurotalk.psychcentral.com/sh...light=headache

When it comes to your drug of choice, it is my feeling that each of us is different in what might work for us as individuals. I also think you should wait about one year before you start contemplating a change, since the DMD drugs, including Tysabri, don't necessarily work right away. (Of course if we have a very bad reaction to the drug, it's probably not advisable to keep plodding along and hoping it will improve.)

Another thing is that apparently most of our obvious MRI activity (inflammation) tends to happen early on in the disease process, and then they believe that the process changes more towards neurodegeneration rather then inflammation. I believe that is the reason that so many people eventually appear to level off (somewhat) after a few years from their dx . . . perhaps combined with getting on a drug that works for them.

You've been on C for a couple of years now, and I would think that if it was working for you, you would be seeing a downward trend towards the number of attacks you are having. I think the "average" number of attacks is 1.5 every two years, but of course this is JUST an average. Still, if I were you, I would be looking to see if I am having far more then the average, when evaluating whether my current drug choice is "likely" to be "doin' what it should".

As far as this recent spinal cord activity, it is my personal experience that a high fever and/or infection seem to anger my spinal lesions. I don't find that so much with my brain lesions, but then again I don't really have a lot of experience with brain lesions anyway. If your 5 attacks have been "spinal lesion ones", it may be that the Copaxone is working in your brain, but the spinal inflammation is just reacting to infection, or doin' it's own thing for no particular reason. Spinal lesions are fickle.

After my first attack, which was initially experienced on both sides, it rendered me with mostly left-sided issues in the longer run. After that first spinal lesion attack though, there has been no rhyme or reason to which side is affected by an attack or damaged in the process.

Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
.
lady_express_44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
weegot5kiz (04-03-2008)
Old 04-03-2008, 09:09 AM #14
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

Quote:
Originally Posted by Av8rgirl View Post
The one and only active lesion I have is spinal. I have several brain lesions, but they haven't enhanced in 5 years.

I don't have TM and but did have an espisode of MS Hug this past winter.

Good information, Cherie, thanks for bringing that up.

You are welcome, Cheryl, and I didn't mean to maliciously contradict what you were saying (I did read your response before I posted). I was just responding based on what I have personally experienced and learned along the way (which happened to contradict your experiences). No offense intended.

I am curious about the particulars about your experiences though (to enhance Franks & my knowledge), but mostly because I am trying to make sense of all this information we have to consider . . .

What symptoms do you have with your attacks; all spinal lesion ones?

Also, that there is no brain enhancement . . . have you been told that your attacks are not related to brain lesion damage/activity of some sort, even if it isn't apparent on a MRI?

The reason I ask is because it is my understanding that lesions will or won't enhance, basically at will, but that that activity (or lack thereof) doesn't necessarily correlate with clinical manifestations of an attack.

For instance, they followed a number of people with very regular MRI's (more often then monthly, but can't remember the exact intervals) and people were still experiencing clinical attacks even though there was no enhancement. And, when there was enhancement, it didn't necessarily mean there was an attack going on.

This is apparent with people who have SPMS too; no "active" lesions, but relapses still occurring, as does progression.

Also, is this the reason you can't do Tysabri ~ because of no apparent inflammation in your brain lesions?

As far as spinal activity/attacks, the way I understand TM is that is it just another word for spinal lesion attack, at least when we already have a MS dx. When we are undx, they call it TM, but when we are dx, it's a spinal lesion attack (but still just TM).

What I am trying to say is that it's kinda' like ON, or ataxia, etc. in that way. If we have ON (or ataxia, etc.) as a stand alone symptom, they call it ON. However, when it's combined with having MS, as the underlying dx, then the ON is just another manifestation of this disease process.

Do you see what I am trying to get at?

Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
.
lady_express_44 is offline   Reply With QuoteReply With Quote
Old 04-03-2008, 10:11 AM #15
sugarboo sugarboo is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,516
15 yr Member
sugarboo sugarboo is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,516
15 yr Member
Default

Wow Frank,
Those 'roids really got your fingers moving! LOL! I hope you get some feeling back real soon. You know how much I care!
__________________

.
Wisdom to the soul is what health is to the body
sugarboo is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
weegot5kiz (04-03-2008)
Old 04-03-2008, 11:10 AM #16
weegot5kiz's Avatar
weegot5kiz weegot5kiz is offline
Elder Member
 
Join Date: Jan 2008
Posts: 11,805
15 yr Member
weegot5kiz weegot5kiz is offline
Elder Member
weegot5kiz's Avatar
 
Join Date: Jan 2008
Posts: 11,805
15 yr Member
Default

he had mentioned that a visit or two back that maybe it was keeping the brain lesions at bay but the spinal he was sure how it would do, unfortunately i think i am finding out thanks for taking time everyone the confusion part can really get you to double thinking and this headache injection I have been double thinking for a few days now, i just dont like the idea of it
__________________

.


History doesn't repeat itself, but it does rhyme.............................Mark Twain



.
.......
.
...
.
weegot5kiz is offline   Reply With QuoteReply With Quote
Old 04-03-2008, 11:10 AM #17
MooseasaurusRex's Avatar
MooseasaurusRex MooseasaurusRex is offline
Member
 
Join Date: Jan 2008
Location: Standing right beside you. (Elizabethtown,NC)
Posts: 855
15 yr Member
MooseasaurusRex MooseasaurusRex is offline
Member
MooseasaurusRex's Avatar
 
Join Date: Jan 2008
Location: Standing right beside you. (Elizabethtown,NC)
Posts: 855
15 yr Member
Default

Frank!

Frankfrankfrank!

Can't add any more advice than you've already gotten. So a vote of solidarity, partner.

(There's no smiley for 'handshake' so I guess I gotta hug ya').
__________________
You can't have everything. Where would you put it? -Steven Wright
Once you change your mind, you can change your life. -Della Reese

.
Always outnumbered...
Never outgunned
.

*I* am the MonSter that MS fears
MooseasaurusRex is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (04-03-2008)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 06:58 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.