[legzzalot]

OK the IVSM did work wonders once I got over all of the nasty side effects and withdrawals. The numbness had gone away everywhere except one spot in my right leg. Throughout the weekend, the numbness has once again spread to include my entire right leg, parts of my stomach and back and now parts of my left leg too.

I am still having back spasms every time I lay down and the neuro keeps telling me it is not the MS that it is stress.

But I really am not stressed like I was a few months ago. Work has been really easy, and the sale of the jewelry has given us a pretty good Christmas. My future stepdaughter is visiting this week and it's the first time i have seen my fiance smile in a long time. Life is pretty good right now. So good in fact that I am flat out refusing to try steroids again at this point. I don't want to be sick and bed ridden for Christmas.

Does anyone have any suggestions besides steroids that would help with the numbness?

[tkrik]

Legz - I really don't know what would help. You can try an ice pack and see what happens. Ice is good for nerve conduction. When I start getting those back spasms, I use ice and it seems to help. Some nights I go to bed with an ice pack (well, actually a couple) on my back. I lay on my side, prop the ice packs up using pillows and lay against them.

Hope you start feeling better soon.

[FinLady]

Another example of different tricks working for different people. (wacky stuff )

I'm the opposite of Tkrik. Spasms and Tightening are helped by heat with me. I've had to learn the time limits to keep from getting overheated. Guess it's a trial and error to finding the right combo.

As to the numbness, I haven't found anything that can really help with that. I do know that pushing too hard, getting overheated, getting sick can increase the intensity for me.

If you're having problems feeling the floor, sometimes finding the right pair of shoes helps. I have a merrell shoe I wear on my bad days. The way it's designed helps me with balance and helps me feel that something is under my feet. I also often wear sandals around the house as well.

Hope you feel better soon.

[tkrik]

Very true, Fin. For the numbness, I have no idea what to do. It gets annoying but I thought of something and came back here to post it.

Shortly after I was diagnosed, I had that numb, burning feeling in my left foot and leg. Since I was just learning about all of this and didn't know what to do, I put ice on my feet. I won't be doing that again. LOL I learned something though.

Legz, it is a trial and error kind of thing and each of us is different and responds differently. I hope others chime in and give you some good suggestions and that you start feeling better.

[CayoKay]

Originally Posted by legzzalot

But I really am not stressed like I was a few months ago.

it doesn't work like that for me...

stress is cumulative, and sometimes it takes a while to show up as symptoms.

for me, it was a *month* after major surgery until a debilitating flare, and likewise for a death in my family...

Stress link to multiple sclerosis

Stressful life events seem to make the symptoms of multiple sclerosis worse, a British Medical Journal study suggests.

http://news.bbc.co.uk/1/hi/health/3118758.stm

it's great that the IVSM worked for you, to calm down the lesion inflammation but sometimes a little bit is left over, and rears its ugly head after the treatment is finished.

even 'drunken monkeys' need extra rest afterwards, so don't try to get back in the swing to quickly after a flare... that can make it POP back up again, unfortunately.

[legzzalot]

You know I love how all of these articles I am finding online all refer to numbness tingling, pins and needles as being the number 1 symptom with MS yet, the doctors and writers all seem to think it is a harmless or benign symptom.

Stumbling around and trying not to look like I have been drinking and attempting to feel the pedals when I drive is not something I would consider to be harmless or benign. Feeling like my leg is on fire one minute and completely numb the next is far from what I consider to be harmless.

I did find out from my reading that aside from IVSM that amytriptoline seems to be helpful and ironically I am taking 2 of those at night to help me sleep.

Is it just me or are our doctors full of useless information?

[Erin524]

Originally Posted by legzzalot

You know I love how all of these articles I am finding online all refer to numbness tingling, pins and needles as being the number 1 symptom with MS yet, the doctors and writers all seem to think it is a harmless or benign symptom.

Stumbling around and trying not to look like I have been drinking and attempting to feel the pedals when I drive is not something I would consider to be harmless or benign. Feeling like my leg is on fire one minute and completely numb the next is far from what I consider to be harmless.

I did find out from my reading that aside from IVSM that amytriptoline seems to be helpful and ironically I am taking 2 of those at night to help me sleep.

Is it just me or are our doctors full of useless information?

Yes. Doctors are pretty much useless unless you're bleeding from the eyeballs or something.


As for the numbness, I know it's really hard to not focus on it, but the more you focus on it, the worse it gets. Try to ignore it, if you can.

I noticed last spring when I had some of the worst numbness ever in my legs, that if I kept Googling about it, or talking about it in the forums, it made the numbness worse.

If you can do it, try to relax about it, and try not to think about it all the time. It might not be so bad if you can ignore it a bit. I know, easier said than done.

[lady_express_44]

Originally Posted by legzzalot

You know I love how all of these articles I am finding online all refer to numbness tingling, pins and needles as being the number 1 symptom with MS yet, the doctors and writers all seem to think it is a harmless or benign symptom.

Stumbling around and trying not to look like I have been drinking and attempting to feel the pedals when I drive is not something I would consider to be harmless or benign. Feeling like my leg is on fire one minute and completely numb the next is far from what I consider to be harmless.

I did find out from my reading that aside from IVSM that amytriptoline seems to be helpful and ironically I am taking 2 of those at night to help me sleep.

Is it just me or are our doctors full of useless information?

I don't think it is so much that they look at the numbness as "benign" as that they view it as mostly untreatable.

The numbness (and other sensory symptoms) come from spinal lesions, and it is my experience that spinal lesions are just going to do whatever they *&% well please, no matter what you use to treat them (EXCEPT if they are caused by treatable infection). Steroids will sometimes to take down the inflammation during a flare . . . at least momentarily . . . but the symptoms ALWAYS seem to come back anyway, to "finish the job".

I don't think this is necessarily true with ON or other brain inflammation, but it sure seems to be with spinal lesion inflammation. Anyway, I think this is why they often do not offer treatment for "sensory symptoms" . . . and that is what makes it seem like they don't take it as seriously. They do, and in fact are fully aware that spinal inflammation is probably some of the most dangerous we can encounter.

Cherie

[jmiller]

Well I have had that numbness for over a year now. Mine is from my scalp to finger tips. It has never gone away, and gets worse when its hot or during stress. Ive seen several neuros and all say the same thing, theres nothing they can do.

So even though its been very annoying, somehow I have learned to ignore it and try to adjust. Some of us can do it and some cant, its just like anything else this stupid MS decides to throw our way.

Ive tried cold and heat but both only work momentarily. The IVSM help a tad too.

[Lady]

Originally Posted by legzzalot

OK the IVSM did work wonders once I got over all of the nasty side effects and withdrawals. The numbness had gone away everywhere except one spot in my right leg. Throughout the weekend, the numbness has once again spread to include my entire right leg, parts of my stomach and back and now parts of my left leg too

They don't usually give IVSM unless the MS is affecting your vision, having weakness in a limb or trouble with walking. They don't give it for pain or numbness, these are sensory symptoms. I find it may take a lot longer for the IVSM to continue showing benefit. In a month or so you might find more benefit from this drug.

Just stopping the steroids does not take way all your symptoms, it takes time. Sometimes we accumulate symptoms and get left with residual damage. I hope that is not the case with you.

I am still having back spasms every time I lay down and the neuro keeps telling me it is not the MS that it is stress.

It sounds more like spasticity to me which requires some stretching, exercise and perhaps some anti-spasticity medication.

But I really am not stressed like I was a few months ago. Work has been really easy, and the sale of the jewelry has given us a pretty good Christmas. My future stepdaughter is visiting this week and it's the first time I have seen my fiance smile in a long time. Life is pretty good right now. So good in fact that I am flat out refusing to try steroids again at this point. I don't want to be sick and bed ridden for Christmas.

How long were you on IVSM and at what dosage? Are you stressed that you are not feeling as well as you thought you would? That is stressing just by itself.

Does anyone have any suggestions besides steroids that would help with the numbness?

They sometimes prescribe Neurontin or Lyrica for sensory symptoms.

BTW, Also the drug you take at night Amitriptyline, may be causing the numbness, keeping it with you or to increase it. See below:

Within each category the following adverse reactions are listed in order of decreasing severity. Included in the listing are a few adverse reactions which have not been reported with this specific drug. However, pharmacological similarities among the tricyclic antidepressant drugs require that each of the reactions be considered when amitriptyline is administered.

One of the areas it mentions:

CNS and Neuromuscular: Coma; seizures; hallucinations; delusions; confusional states; disorientation; incoordination; ataxia; tremors; peripheral neuropathy; numbness, tingling, and paresthesias of the extremities;

extrapyramidal symptoms including abnormal involuntary movements and tardive dyskinesia; dysarthria; disturbed concentration; excitement; anxiety; insomnia; restlessness; nightmares; drowsiness; dizziness; weakness; fatigue; headache; syndrome of inappropriate ADH (antidiuretic hormone) secretion; tinnitus; alteration in EEG patterns.

http://www.rxlist.com/elavil-drug.htm
I hope you feel better soon and enjoy your company and Fiancé. Holidays are hard on PWMS. So much to do, it stresses me.
Lady