constant numbness and weird feelings???

[1moore]

I was diagnosed in feb and am new to the world of living with MS.  I do alot of lurking in the forum.  Anyway, I guess I expected/thought that I would go through periods of "normal" where I didn't have any symptoms at all.  However,  since my diagnosis (at which time I was having a relapse where I went numb from the waist down) I have had some part of my body numb and strange feelings including electric sensations, hypersensitivity and pain in hands, legs, feet and hips daily sometime more than one at a time.  I guess my questions is to those of you who have had MS for a while is this normal?  Is this my new normal?  Will I never go back to periods of no symptoms at all?  Is this one long relapse that I need to go get steriods or something for?  I really don't like taking medication and start on Copaxone next tuesday.  Please help me explain this.  I just need to understand a little better.

[twopack]

I can't apologize enough that I completely ignored your request for help in my earlier reply.  So very sorry I got side tracked.

Luckily, Julie covered it really well.  Nobody likes the thought of being on medicine all the time, especially injectables!  But there is real hope that you can get your symptoms under better control.  It takes a while - and the drug company makes no specific claim for this - but many of us have found that we do start to feel better after some time taking Copaxone.  I noticed real improvement at around 8 months after starting Copaxone.

In the meantime, PLEASE do ask your doctor about a good course of IV steroids if you haven't had them already.  Any chance to accelerate the disappearance of symptoms is worth the effort.  Are you taking any other medications?  If a lot of your symptoms are sensory you may benefit from something like gabapentin.  If your doctor isn't offering these things he is dropping the ball (IMO anyway).

It may take a while to get the best mix of meds to control your symptoms.  Sometimes it works best to tackle the symptom that bothers you most first.  That way you can add one med at a time and see how it works before adding something else or switching around.  Some of the drugs can cause drowsiness at first.  Others need to be increased gradually so it takes several weeks to reach the effective dose.

Please come out of the lurkers corner and ask as many questions as you can think of.  There is every reason to believe you can be feeling better in the not-too-distant future but it does take some work to get there.

1moore, you are not alone and you are not just one more in a generic MS crowd.  Take a look at this video (copy and paste)
http://www.youtube.com/watch?v=8LQH6UDi15s&feature=mh_lolz&list=FL4QBClo_pGLY

Now look out in the night and see the rocket I just shot off to light up your sky.
Mary

[jujuminx]

Twopack said it better than I could but I would like to add my two cents.

I know you are scared but some of the information you are posting on this forum is incorrect.  While dmd's are expensive, they are definately not 40K a month!  Maybe 30K a year but for most people there is insurance or assistance of some kind.

My dmd's cost me $35 a month and I wouldn't even pay that if I released my medical records to TEVA. DMD's are a life saver as far as I am concerned, regardless of any medical procedure that is being studied, it will not take the place of dmd's until they find the cause and the cure for MS.

CCSVI is controversial for a reason. People have died from the procedure. That is the problem, the subsequent studies haven't had the same reported success b/c there are questions about how the test subjects were selected, what the statistical blockages were to begin with,and for those who experienced some benefit, it wasn't long lived.  Heck they haven't even answered the question if the blockages are related to MS (some people w MS have it, some dont, some people w/o MS have it) and if they are if they are caused by it or effected by it.

All of us are hopeful that ANY research and studies done on a cure for MS is done quickly so we can benefit but this procedure is far from proven at the moment. Even the orginial dr says it needs more study before it is possibly used for treatment and, he never said that it was a cure. And as far as subjecting yourself to the procedure multiple times?!  That is very risky.

I hope you will get your dx soon so that you can begin some sort of treatment. As far as I know, no insurance co will cover the CCSVI to "possibly" improve MS sx and I would think that you would have to prove some sort of need to have the veins cleared before they would pay for it.

Please keep us posted in your journey and tests. I would like to know what you are ultimately dx with and what choices you ulitmately make.

Good luck.

Julie

[jujuminx]

I am so sorry you seems to continue with your numbness since your dx.   Lulu is right, everyone is different so it's hard to compare someone elses sx with your own.

I distinctly remember thinking the same thing after my dx. It took a while for my sx to go away but they did, ever so s l o w l y.  It's never fast enough is it? The not knowing is the hardest part.

All I can say is think postitive and take extreme care of yourself. While some of my sx came back periodically (went from constant to maybe a couple episodes a day, to a few a week ), now it's rare for me to have any sx.

I am so glad you are going to try copaxone. That is what I am on.  It's a little scary at first but it's like brushing my teeth now.

After my dx I was put on steroids so if you haven't, ask your dr about that. It helped me.

Hang in there. You are not alone and keep us updated on your progress. I want to hear about how your injections go and how you are doing.

Julie

[twopack]

Oh, an ultrasound is the test used to diagnosis narrowing in the interior of vessels.  That is what you would need to be diagnosed with CCSVI.

[twopack]

I hope you find out you're not dealing with MS but if that is your diagnosis in the end, I hope you'll look into CCSVI on sites that are more reliable than YouTube.  I certainly don't know everything about it but I do know that some of your information isn't accurate.

The disease modifying drugs certainly ARE expensive.  I know of none that are $40,000 a month.  A year?  Several would cost that much if you had to pay the full cost out-of-pocket.  I don't know of anybody who pays the entire cost themselves.  I don't personally know anyone who could afford that.

I'd be interested to hear if insurance pays any portion of procedures associated with CCSVI.  It would be considered an experimental treatment so I think (at the very minimum) your insurer would expect you to have a rapidly progressive disease that is unresponsive to accepted treatments before they would even consider experimental options.

CCSVI stands for Chronic Cerebro-Spinal VENOUS Insufficiency.  It is not a problem with the arteries or getting blood TO the brain.  It is a narrowing of the internal jugular VEIN that makes it difficult for blood to flow AWAY from the brain fast enough (and therefore iron deposits may be left behind).

In the end, you would be looking at a surgical procedure that carries specific risks.  It is up to each person to decide if those risks are outweighed by potential gains.  The disease of MS AND the procedure for relief of CCSVI will both need to be fully researched to make an informed decision.  At least it appears those of us living in the US can now access this treatment within our own borders.

I would never blame anyone for searching diligently for a total cure (or total symptom relief).  I just want you to know that not every life lived with MS is a miserable one you need to run from at any cost.  Sure, I wish I didn't have to accommodate disease as I strive to live the fullest life possible.  But I can assure you, my life has certainly been worth living all along.  Seeing where I am today makes me glad I took advantage of opportunities available to me in my youth.  I live without regret.  I hope the same for you.  

Prepare yourself.  Good luck.
Mary

[1moore]

I have an idea but didn't jot down the exact time

[sllowe]

1moore,

Hi there,

Sorry to hear of the dx - but glad your in the know. Wishing you well on Copax. I wasn't one for meds either, but we have to take what is available to us early enough in the disease to make a difference.

What you are experiencing w/the numbness may, or may not be your new norm. Time will tell. Did you jot down when it started?

-shell

[1moore]

Just curious that is what I read too when I googled it, my MRA was normal but MRI not so much!

[Friendlily]

i probably shouldnt be quoted on the percentage because i cant remember exactly which study it was because ive read so so much about it and (my memories gone out the back door twice)lol but im sure if you research it enough youll see it :)

[Friendlily]

Im not sure but i think they use an MRA and/or a dopplar test to check if they are blocked but in a study i read that 90%of MS patients have blockage in their jugular of some kind

[1moore]

This may be a crazy question, would CCSVI show up on a MRA?

[Friendlily]

I am concerned about the same things 1moore although i am not officially diagnosed yet...but the one thing that really gives me hope is the CCSVI treatment you should look it up especially on youtube..i know its contriversial and everyone says not to get your hopes up but i already have :)...i know that if i get a complete diagnoses of MS thats the first place im running because i heard that meds that keep you from relapsing can cost 40,000 a month and this surgery costs 15,000 so even if it only worked for 6 months it would be way worth it to me and cheaper..plus the main thing is if you have a blocked artery (like in CCSVI) it needs to get unblocked regardless and if it improves your MS or even could improve it i figure why not consider it? I hope you the best and you can message me anytime if you want :) God Bless

[1moore]

thanks.  Sometimes it is very difficult to describe what is going on.  I have not yet discussed this with my Dr.  I see him middle of next month for the first time since my dx.  I have so many questions for him. I first had ON in my right eye about 12 years ago with a flair about every 2 years in between. So now with the feelings so constant it seems strange.  Not sure anyone ever really understand what is going on do they?

[Lulu54]

Welcome to the club.  I think was all have times when we need to understand better  - this is one crazy disease to try to figure out.

Unfortunately there is no normal with MS; everyone has different symptoms and disabilities.  We usually can't expect our new normal to be what our old one was before a relapse, but sometimes we're surprised.

You very well can go back to minimal symptoms and I hope that happens soon for you.  Good for you to choose a disease modifying drug (DMD). That can be a tough choice but it is the best shot you have at keeping yourMS at bay.  

Have you talked to the doctor about your ongoing symptoms?  That is the next step I would take.

You are in the spot of needing to learn more about this MySterious disease and our health pages are a great place to start.  You can access them through the yellow icon on the upper right side of this page  or

http://www.medhelp.org/health_pages/list?cid=36

These are written by our members here and contain a wealth of info.  Just don't try to learn too much, too quick.

Remember, having MS doesn't mean life as we know it stops.  We just have to approach it from a different angle.

I'm sure others will jump in and add some tips, so just let me say welcome to the club no one wants to belong too.  You are in good company here.

be well, Lulu