Multiple Sclerosis (MS) Support Group

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tarabunnyears 09/11/2012

I am on a cane again. Only from pain, not weakness.

This has happened before about 7 times.

My feet hurt too much to walk. Well, mostly my left foot. Right aches but not as bad and I can put full weight on it.

Hands in spasm, not as painful and I have tender point on my shoulder and hips, like in fibromyalgia. (sp)

But, I have been tested for fibro and he said no. And I just looked up on the pressure points and NONE of the points hurt, where I hurt is different.

I looked up rheumatoid arthritis, and again, not the same areas. (I too tested negative for that)

So I am left with MS. Now here is the thing. I went into a relapse 3 weeks ago. Spent an entire week in bed. After that only out of bed when absolutely needed. No housework, no laundry.

Sooo tired.Weak legs and so on.

As for my left side, that is my most effected side in my MS

Now, when I am not walking, my toes spasm, bad. As in it wakes me up from a drug induced sleep. (Tizanadine)

Can muscle spasm do this? It feels like my muscles are affecting my bones? Can that happen. Cause bone pain. I suppose they are connected to the bone via tendons, so kinda makes sense.

No, I have not seen a dr about this relapse. My situation did not allow it due to kids and so on.

I see my neuro on Wednesday but a new one, my old one moved across the country in August. :( And I really liked her. So I am scared this dr is no good But I have to wait.

Often this "Joint/bone" pain affects my knees. Not this time.

Anyone else experience this? Or have any suggestion other than MS?

tarabunnyears 09/11/2012

Also, my arms ache, as if my bones ache. My forearms.

lchoppel 09/11/2012

So many people have pain from their Multiple Sclerosis in so many ways. Some from spasms, some through neuropathy, optis neuritis eye pain, etc. Don't let a doctor tell you that MS does not cause pain! We have a pain management sub-group here at DS, see the following addy:

http://www.dailystrength.org/groups/ms-people-dealing-with-ms-pain

After you see your new neuro, please look up or get a good reference to a Pain Management Clinic or doctor. It was the best thing I ever did for myself. You are not alone!

tarabunnyears 09/11/2012

Can a pain clinic treat your pain without drugs? I have chronic pancreatitis and cannot take anything with codeine, topamax, and many others.

koda1 09/11/2012

Sorry your so sick tarabunny

but its good to see you again
maybe a good anti inflame might help

mixedupmelly 09/11/2012

My initial dx was fibro, but my neuro thinks I may have ms as well. I have the same kind of spasms but it's in my right side. Ive had three really bad flare ups in the last 6 months. The first was my right hand. I couldn't move it for 3 days and had to wear a brace to keeps fingers straight. The second two times it hit my right leg starting in my calf. I woke up screaming both times and when it hit my ankle, it locked up. My toes were almost touching my heel before it let up. The second time my ankle turned inward and it almost dislocated it. My neuro put me on keppra (anti seizure) cymbalta, b12 shots daily and a muscle relaxer for when all else fails. I've been on the keppra for three weeks and it's helped with the brain fog and some of the twitching. I've also only had mild spasms and I'm still on the lowest dose. I've also had spasms in my neck shoulders and sides but only when I'm really stresssed and tired. Until he runs more tests he's calling it c fiber neuropathy of indeterminate origin. He's ruled out md and a slew
Of muscle diseases as well as cfs.
Dr said I'm not crazy but my brain is broken. It's sending and receiving messages that it shouldn't. He so says there is currently not a name for it, nor is there tests to dx it so all they can do is treat the symptoms.
It sucks and it's not fair to any of us, especially when you look fine on the outside but you don't feel fine on the inside.

mixedupmelly 09/11/2012

I've also had the recommendation to get Botox injections in the muscle because it acts like a paralytic.

MSKC 09/11/2012

Sorry you feel bad, tarabunny. I can sympathize
because my feet are hurting too. Really makes everything I do
more difficult. In fact, I just massaged them with a peppermint foot lotion, then put
socks on. I have to keep socks on all the time now because any air
touching my feet hurts!

Hope you feel better!

ezone 09/12/2012

Tarabunny, I am so sorry that you are not well. You have had it rough. What about seeing a holistic type doctor who could help you detoxify all the stuff that you have been exposed to through your life. I remember you saying that that you were exposed to a lot of things when you were growing up. Pesticides sprayed from the sky, etc.

I am reading Dr. Wahls' book about detoxifying our bodies and it is talking about about kelp and seaweed and other things that can rid things out of our body. Since you can't take a lot of stuff, I am just throwing things out there as a suggestion. You can tell me to go jump in the lake, but I don't don't know what to say. I am so sorry that you have it so bad. Damn!!!

Thoughts are with you. Good luck with your new doc.

deleted_user 09/13/2012

my neuro who is head of neurology dept at a major hospital told me that MS is not a painful disease. I wanted to laugh. I have decided I will be my own doctor and will use doctors when some info is not clear. Most are not helpful because they are in the dark themselves. They do not know but stick to some double blinded studies. Whatever.

tarabunnyears 09/13/2012

Thanks all. Starting IV Steroids. Hope they help. Ezone, I have longed questioned the whole detox thing. Not in a way of saying there is no way it works, but does it really work? As in I am not sure how it would work but a part of me hopes it would.

There are many whacky theories out there that angers me to hear or makes me roll my eyes. But detox is not one, it is one that makes me pause to consider it. I know our bodies are full of contaminants. Can they really be drawn out?

I guess one never knows until one tries. Something to consider. Thanks.

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