maybe some of you all could help on this one
 

OK been DX since 2006, yet something was wrong since 1999, I didnt know what was wrong nor did I ever suspect MS. so the attacks ( about3-4 a yr)came and went and i did not log them into my data banks for comparison.

now since the DX this is my 5th attack anywho most times everything has always been on left side, and looking back i see this to be true with before, when I no idea of what was wrong, left eye vision troubles left side of face slouch slurred tightness numbness all left,

this latest attack, and by the word attack i mean exasberation or however u spell that da@@ word, this time its right side i could not even feel docs touching my head or face arms or legs the pin nothing

having trouble with right leg and arm numbness and stability and well the cog fog at the moment is horrid and my typing is a joke my left hand already sucketh, cause of crippling fingers

now my right ones hit what ever key they want. most of my lesions are in the brain but the last 3mri's we have been watching one grow in my spine and a fairly large one, my wife ask if we are doing another mri and both of us answered at same time no why waste money

cause we know what its gonna show its there its active. I guess what I am trying to get at is does this ms switch sides I know when i asked a long time ago in that other dimension about numbness left or right side i saw a few that said both.

Am I reaching the both stage or can this ms change course and decide he lets go mess with his right side of his body for a few yrs now, and leave the left alone? or is this something more I need to adjust to,

and for the record if any of you saw my inquiry about headaches and MS, well Nero the neuro finally said something," generally headaches are not asscociated with ms but the spinal attacks can lead to it and some times when you have exesberations, it can also give u headaches too.

for the record I dont get headaches I have had 14 maybe two or three more than that and by headaches i mean migraines which would pretty much account for the amount of times I feel, and looking back at my er and hospital stay charts, the pieces are falling in place.

I know now when I get a migraine I am having an attack, sorry to go on like this I am on a bigger than normal dose of steroids, and they wonder why baseball players take them, its cause they can hit the homer and run the bases and be seated before the ball lands.

this right side thing sucks i had come to terms of dealing with left side issues the left side issues seem to be permanent are these right side ones gonna be too or will it take a few attacks b4 that happens?

I know you are not docs just a guess or scenarios would help what u went through ect....

peace and again sorry so long:eek:

Hi Frank. My original attack was mild, but all over. My second attack from He!!, 17 yrs later, was mostly left sided, which was good...I could still drive.:)

Then I had a right side attack, but healed almost fully from that one. This all happened to me before LDN.

So, I would say that my weak side is still my left side, practically useless. My hands are little numb but ok, so I can still type. My right leg is MSessy but strong enough to carry the load....and the load is getting heavier..lol.

you can still heal a lot after an attack, over time, so, I wouldn't count yourself out yet. The secret is to find some med, any med, that will keep you from having any more attacks. You're still young. Take it from me.....age and MS don't mix well. :rolleyes:

I'm so sorry you are being attacked by the monster right now. I hope it goes away quick and you have no lasting effects of it. :hug:

Hi Frank
I'm sorry you're feeling so crummy. Sally gave you some really good info and I agree with what she said.

For me my right side is my weaker side, but my left side is quietly numb. Actually I'm numb from top to toes now. It just "appears" more painful to me on the right side.

I have several spinal leisions and only a couple in the noggin. One of them predisposes me to siezures.

Just hang in there. The steroids are supposed to work, but my experience is the numbness (sensory sx) just has to run it's course and so I forgo the steroids as much as I can.

I had a terrible headache for 3 weeks back in July. I could swear it was like the one after my spinal tap. It only seems to improve when I was horizontal. I hope your headache wanes.

Take advantage of the roids and you can start and finish your spring cleaning tonight. :D I don't mean to make light of your sx, but I find it easier to laugh at this MesS. Feel better soon.

:hug:

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, thats why I am confused more than normal, funny thing is deb has been saying all along with this headache named chucky I was having an attack she was noticing my right hand shaking my speech I have been dropping things with my right hand I am numb, I can inject anywhere now and not feel it neener neener neener,lol I think doc is thinking of a switch in meds he hinted at it cause the copaxone hasnt stopped this big lesion from developing in my spinal cord column thingy, i havent used the word thingy in 2 days , i feel so much better now.

well at least i got on some steroids :eek: that hopefully will help the headache first cause looking more into this injection I dont think I like this, its a big needled they numb me so they can go fishing in the back of my head to find the right nerve, can we say I dont think so

Frank

I am sorry you are doing so bad right now but hope the steroids kick in soon and you get back to your ol' self again. Just for the record, the steroids you are taking aren't the same kind as those ball players take! LOL! :eek:

Anyway, all the steroids I've taken for all the horrible exacerbations I've had give me headaches every darn time...and I am a migraine sufferer. I've had migraines for a very long time. We finally got those under control with Topamax but I still get headaches, more like I've been hit over the head with a baseball bat, when I do steroids.

As for having symptoms on both sides of the body, yes...I do. I will have humbness, tingling, drag foot on both sides of my body during an exacerbation. I've had my body from the entire waist down completely numb for 2 months...both legs, not just one. So, it does happen. I've had both hands and arms not work or feel anything.

I think it depends on what lesion is active when I am having an exacerbation. And just how long I wait until I finally decide to call for the steroids.

I know from experience that the longer I wait, the worse the inflammation gets and the more parts of my body are affected. I've learned that the sooner I recognize the signs and start steroids, the quicker it nips the excerbation in the bud, so to speak.

Anyway, thought I would share my experience with you.

I do hope you get rid of the headache. I don't like them and am certainly happy that the med I am on works.

Take care....;)

thanks I use topomax for the headaches too and I too noticed the quicker I get on roids the faster it goes away, because a couple times the last two I didnt catch what was going on and I had to do a double dose of roids, I hate these dang things, on top of it I just got off a mass dose for upper resp infection and bronchitis last month I figure in one more day i will be back to annoying the house with orders of house chores lol hope they are enjoying their vacation

the headaches I am so sorry you have to deal with these all the time I cant stand it and I have had maybe 20 at the most in my whole life and most of them in last 9 yrs.

today laying here in dark room cause the headache is still troublesome but it wasn't too bad, key word wasn't, bed is against window head wasn't too bad thought I would pull up the blinds and open window for fresh air, cord didn't want to work for me tugged a little harder whole blind came down right across my bridge of my nose and guess who said good morning my headache lol

one of my more graceful moments and deb just stood there laughing such support and love, and my kids not hello dad or oh my are u OK it was what did u do to you face nice gash

tomorrow i remove the airbags from both cars activate them and surround myself with them,

figured i would share that make someone smile out there

The topamax has worked to keep the migraines at bay and I haven't had one migraine since I started on this medication! Yeah!!!

I still get the 'roid headache tho, but at least it's not a migraine.

Sorry 'bout the blinds falling on your face...ouch!

One good thing about the 'roids for me is I get a lot of sleep! I don't get hyper on them.

I just got over the sinus infection I had for 2 months and it caused me to have a flare as well but since I am in this clinical trial, no steroids for me!

Get better...:D

Frank, most of my problems are from spinal lesions, which for me, was first diagnosed as Transverse Myelitis (immediate) and/or probable MS.

Once we’ve had two of these type of TM attacks, OR they find brain lesions too, the TM dx will normally change to MS (or possibly even Devic’s disease, if it is only spinal lesions + ON).

TM, can happen for no cause too (idiopathic), but as many as 80% of the people dx with TM are eventually dx with MS. The reason I am telling you this is because TM (or spinal lesion attacks from MS, however you want to look at it), are an entirely different kettle of fish, as far as the progression of an attack, prognosis, symptoms, and treatment options.

“TM symptoms develop rapidly over several hours to several weeks. Approximately 45% of patients worsen maximally within 24 hours. The spinal cord carries motor nerve fibers to the limbs and trunk and sensory fibers from the body back to the brain. Inflammation within the spinal cord interrupts these pathways and causes the common presenting symptoms of TM which include limb weakness, sensory disturbance, bowel and bladder dysfunction, back pain and radicular pain (pain in the distribution of a single spinal nerve).”

“Transverse myelitis may occur in isolation or in the setting of another illness. When it occurs without apparent underlying cause, it is referred to as idiopathic. Idiopathic transverse myelitis is assumed to be a result of abnormal activation of the immune system against the spinal cord. . . The list of illnesses associated with TM includes . . . Multiple Sclerosis.”

http://www.myelitis.org/tm.htm

As far as treatments, some neuros might suggest using steroids, however, for THIS TYPE OF ATTACK, to date there has been no clinical trials that have even investigated whether steroids alter the course of inflammation. I don’t want to get into a debate here & now about that . . . but I will send you a link (by PM) that you might want to follow up to get a better understanding of what is going on with you right now, and what your options are.

This government TM site can provide you some very valuable information too (and also mentions the "no clinical trials for this type of attack") detail as well. Most TM sites that I've read say the same thing actually.

http://www.ninds.nih.gov/disorders/t...s.htm#41903234

I guess the point I want to stress is that spinal lesion attacks are very, very different than brain lesion one’s. It is most worthwhile for you to understand the differences.

Cherie

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.

I'm so sorry you're having a tough time right now Frank. As to MS switching sides, I guess that's just another way of saying you are having an exacerbation, but it affects the right side this time and not the left.

I too have had most of my flares on the left side (my non-dominant side) but I do occassionally have a right sided event as well. Unlike most flares since I was diagnosed, the initial major episode which assisted in my diagnosis started with numbness in my right leg but after about a week, the left leg went numb as well.

My most frequently recurring symptom has been ON, and again it's my left eye that has had the most flares. Strangely though, it's the right eye that shows the most damage on VEP.

That original flare which involved my legs was 31 years ago now, but it still shows on my spinal mRI. It's just not an active white spot anymore.

I hope you like hugs Frank, because this is for you.....



Please feel better soon. You're in my thoughts.

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

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 :rolleyes:

I hope you start to do better soon :hug:

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 :mad: 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. :rolleyes: :D

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

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. :hug:

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. :confused:

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

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! :hug:

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

Frank!

Frankfrankfrank!

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

(There's no smiley for 'handshake' so I guess I gotta hug ya').:D