Copaxone with Only Spinal Lesion on C5

I am 37, symptoms are entire head to toe left side numbness with it creeping across my chest to right side. DX with RRMS May 2010. My brain lesion are inconclusive as they appear to also be SVD. My DX came from a lesion found at c5/c6 about 8mm X 4mm wide and found over 5 large gamma in Spinal tap.
Took avonix for first 6 months and quit... wasn't feeling any better. After about 3 months of no meds, my entire Right side is now numb like the first. Finally go on Copaxone.
Just found out this week after seeing a new neuro ms specialist... that I have more than likely had MS for 12 years now.
The brain MRI is still inconclusive but the spine lesion remains there...

I just found out that Copanxone doesn't have any data that says it will help with spinal lesions like brain lesion. is there a drug that is better for my situation? I have been on Copaxone for 3 months now and still feeling bad.

Daily symptoms:
Entire body numbness (more like a dullness to the muscle, not skin)
leg weakness when tired mainly
rolling feeling in thighs
buzzing in arms
pain in right eye
ptosis of right eye (unknown cause)
extreme itching in ear canals *mainly right*
off and on pins and needles
Electric shock down spine into left thigh- off and on
face numbness - dullness goes from light to extreme throughout the day
blurry vision at times
dizzy daily
balance off
when walking a block or two... i notice i have to really focus on walking to make sure i am stepping one foot in front of other normally.
limbs fall asleep very easy . mainly when laying down or sitting  more than 30 mins
driving, my legs fall asleep and neck gets very stiff...

keep in mind... all of this is Daily! I just don't understand why i have so many sensory issues that remain and don't go away... could i now be in secondary progression stage? my doc doesn't like to label that for some reason when i asked and didn't give me a answer.. he said we all progress no matter what drugs we are on.
I still work full time , try to get out as much as possible and to Look at me... you would never know unless you watched me walk around or get up from sitting too long.. then i look like i am 100 years old.

2 questions:
Will Meds work for me with only Spinal Lesions and Positive Spinal tap... or is he giving me these meds to help prevent now brain lesions from coming.. and does he think i really do have brain lesions because i have sensory damage from Head to toe?

and When do you label someone secondary progressive.. .i guess it really doesn't matter but I really just want some answers..

Thanks for reading my novel... I am so lost... I just want to move forward.. I am scared to start a family with my husband if I am going to decline this fast , its only been a little over a year and I feel horrible with SX daily.

Renee

[grannyhotwheels]

Hi Renee,
WOW!!!!  That's about all I can say... You are really having a rough go of it... I'm so sorry...  I have PPMS and my Neurologist told me that in his years as a MS Specialist he has found that people with PPMS will have fewer brain lesions and more spinal lesions... When I say lesions it could even be lesion... He also said that quite often no brain lesions are present only spinal ones...

In researching this he said that it is the common in most PPMS patients... Now I don't want to scare you and say you have PPMS but it may be something that needs considered, especially since the DMD didn't seem to stop or slow down your symptoms... I'm no doctor and not all that knowledgeable in the medical field but I do try to keep up with the latest news on PPMS...

From what I've read myself most Neuro's feel the same way as mine does... I would really like to hear the input of others on here about it... You might consider talking to your Neuro about this but once again see what others think about that too... If you do have PPMS the DMD's wont be of any advantage to you...

Again I'm very sorry you are dealing with all of this but I'm right there with ya... It's a daily struggle with no hope of a break in between symptoms... It gets old and it can really get your depression going if your not careful... Hang in there and please let us know what the doc says... Any time you want to talk I'm here and as far as that goes we are all here... One big happy family!!!!

I'll be praying,
Carol

[tingletingle]

Renee,

I am so sorry for your abundance of symptoms, very scary stuff! Unfortunately, there isn't any crystal ball on our individual disease progression but please know that the modern drugs we have now just get better and better. As long as you take something you will do much better.

As a very recent person dxed, I know that Copaxone is not meant to cure you or take away your symtoms (symptoms) but just modify the course of the disease by preventing any more new lesions. I have one small lesion on my brain and have one larger lesions on my spine plus a new lesion on my spine. The numbness/tingling always stays with me so we have a bit in common and PPMS is also in the back of my mind.

My acceptance of symptoms - hot fiery MS hug around my waist/back and tingling/numbness down my legs and recently in left hand- has been gradual. Your symptoms sound much, much worse so I can only begin to imagine what are going through.  

I'm also on Copaxone but chose this due to issues with my liver and a meningioma in the brain. If I didn't have the meningioma then I probably would have gone for Tysabri.  Research and people I have met say it has stopped their disease progression dead and also much more convenient with only monthly infusions. It is, however, a seriously strong drug.

Please talk your concerns and DMD options over with your Neuro. But know that you have a very supportive community right here to lean on. I will include you in my prayers tonight.

Blessings
Alex

[rghoyle]

Thank you both for your kind posting. I know I get off on a ramble but i just feel like I wasted my recent neuro visit by going over my history and when it came to "let really talk about the future" I don't ask the right questions.

I was given the DX for RRMS because my clinical symptoms are all sensory damage. I was told that I have the Mild form of MS and I was going to do better than most that have mobility issues. I have a hard time swallowing this DX when I feel like I do have a decline in mobility. I mean I have not reached for a walking device yet but I could see where days I would benefit with the ease of having that stability there. This new specialist said he believed my weakness in my legs was also sensory damage as I show no signs of true weakness in the office physical test or signs of spasticity.

I guess in his eyes, I have only been seen by a doctor for the last year and its too early to make a change in treatment plans.

Carol - With you have PPMS (and I am sorry you have this form!) what was your SX to get this label? All of my relapses have been a sensory issue , no drop foot etc...

Alex - Are you RRMS too? Do you know if any doctors keep people on Copaxone even if they believe there is no lesions on the brain (mine are there but very small) I have to say I MUST have them there because I have sensory damage on my face and neck too and I can't believe its all caused by the C5 lesion..

Thanks again! I would love more input. I know MS is different for everyone and complex but I just feel I am not asking the correct questions and my next appointment is now not until March 12
Renee

[sllowe]

Hi there,

Chronic problems sure can get the best of you. YOu just get sick of fighting them, unless you get relief with at least one of them.

Are you taking anything for symptoms? i.e., something to simmer the parathesias in your arms, and the rolling thighs? Lyrica? Or, something for neuropathic pain? You deserve some relief!

Though you are undrerstandably frustrated, it does sound like you have a decent doc. Do you have relapses? Or just the daily you mention? Asking because RRMSers have relapses and remissions. I am RRMS, but I have daily, what I call chronic problems. Those problems are stable though, and not increasing.  I use my 1st attack as my baseline, and nothing else has compared to those limitations, so I feel my med is working.

There are cases where MSers have seen improvement in lesions do to their DMD. I'm on Rebif, and my largest is in my c-spine. That is slightly smaller since initial dx in 07. And, it's not as inflamed as back then. So, I do feel that is why I'm stable.

Sorry for all the questions, I hope it's not SPMS, and the copax serves you well - and, you are able to get to that family you want :)
Thanks for joining us!
~Shell

[grannyhotwheels]

I have never had what you would call a relapse... I do have exasperation's, like some days my symptoms will bother me worse than other days but I have never had a symptom go away... Mostly they have all gotten worse with time...

The only thing I ever had that went away was ON (Optical Neuritis)... That was very early on in my MS.... Still when they where telling me I was crazy and a hypochondriac... Once they told me that I knew it was time to move on to another doctor because we know when something is wrong with out bodies... We are not idiots...

Plus my PCP thought it was MS from the get go but he just needed verification I guess... He was the first one to bring it up... Back then I didn't even know what MS stood for and then it still took me a couple of months to be able to pronounce it...hahaha

I wish you the best and please keep us updated as you travel through your journey!!!

I'll be praying,
Carol

[tingletingle]

Yes, I'm RRMS with lesions on C4/C5 & T5 plus one in the right temporal lobe. As far as I am aware with RRMS you have a choice of about 5 or 6 drugs and copaxone is just one choice that you can make in consultation with your neuro. Of course if we do end up having PPMS then unfortunately at this stage there isn't anything to take - yet.

I don't know who came up with this 'benign' MS category. Obviously, the medico has never experienced what we go through daily. And by the multitude of daily symptoms that you describe I would think the 'benign' comment would be like receiving a slap in the face with a wet fish.

Take care of yourself.
Blessings
Alex

[rendean]

Hi Renee,

Your list of sensory symptoms sounding almost identical to mine with a few extra sprinkled in such as vertigo and diplopia due to 6th cranial nerve palsies. I was told my MS was RRMS because all my sx were sensory and that it is mild. I beg to differ, as I am sure you would.

As for one drug working for one type or lesion location; I am not aware of this. I have read many articles that say the average rate of improvement while using a DMD (the CRAB drug) is 30% and it just matters what works best with your body. Tysabri claims a 60+% of helping. Everyone's MS is their own unique MS and no two people are alike. It's usually a trial and error process to determine which drug works best at keeping one in remission, regardless of lesion location.

Ren

[rghoyle]

I am not currently taking any other medication as I try to minimize what i can. The pins and needles come and go so it's usually only the numbness that is constant. I guess I would say I am pretty lucky that I am not in a lot of pain.
I was on that nerve med (Gab) for the numbness but I could deal with the doziness  it caused even on a low doze.

Thank you all for the responses. I do believe I had or still have RRMS since I had some minor symptoms 12 years ago. I am not sure if I have fallen into the Secondary phase or not.
I am sure I don't have PPMS as that doesn't have any relapsing involved.

Guess I will wait another 8 months to see if Copaxone helps and maybe just think of adoption rather than trying to come off the meds right now. : )