[Valese72]

Can TOS eventually cause weakness is your legs if the problem is not treated for many years?

Thank you! I usually participate in the PN forum.

[tshadow]

This question is a very touchy one because the TOS docs are adamant that the nerves involved in TOS are for the upper arms only and do not affect the legs.

HOWEVER, in my own case, early on my left foot on the far left side went numb / pins & needles (5 years now) and they can't explain that.

And for one year both legs had pins & needles.

Last year, both legs would stop working altogether, as did my arms, and I just have to lay down and wait several or more hours until the strength returns to them. Textbook overuse if you ask me.

I have to have a wheelchair if I have an exam where I have to be there at a certain date and/or time so IF my legs give out, then someone can still get me there.

Most of my time, about 90 to 95% of my day, my over-all pain is so high that I can't walk because I am too sick.

One TOS doc said I have a rheumatological disease process that should be my primary diagnosis but the docs simply haven't got a name for it, so they have skipped over it. (I am not joking, nor am I weird, that is what he said.)

BUT, if you discuss this with a top TOS doc, they will so "no, the legs aren't involved with the cervical nerves." They don't get the full picture I think.

Why, what is going on with your legs? Why do you ask this question/ Have you had a full immunological / rheumatological work up to make sure you do not have identifiable problems such as MS or ALS?

[Valese72]

Thanks for your reply Tshadow! I was diagnosed with a peripheral neuropathy over a year ago. It's called CIDP. My neurologist never discussed CIDP with me. I just received literature on the discease when I started IVIG therapy.

To make a very, very long story short, I started getting weakness in my arms and neck about 6 years ago. I remember, because I had just turned 30. I started to go to the gym to excercise my arms and continued this for about 3 years. It didn't progress quickly at all so I never suspected that it was something serious. Finally, I started to limp on my right foot. Not all the time. It happened after I would walk a few block and then I would walk on the outer right side of my foot. My big toe got very week and my foot would drop.

I finally went to an orthopedist for the drop foot. From there I went to a spine specialst and a physical therapist. Nothing helped. Finally I went to my Neurologist who I have been with for just over 2 years now. He was convinced I had ALS at first. We did all the usual tests - EMG, spinal tap, muscle/nerve biopsy, many blood tests and MRI scans. Everything was inconclusive. The only thing that is definite is that we did rule out MS, ALS and some other illnesses.

I came to this forum because I physical therapist that I worked with said I had an extra rib. I have always had back and neck pain and sometimes pain down my arms. It would explain the weekness in my arms. Both my legs are pretty week now, but I am still walking. I have been on IVIG therapy for the past year now. I don't think I am getting any weeker, but I am not getting better. My symptoms just don't seem to be the same as many of the other PN sufferers.

One other strange thing that happened to me was about 6 years ago I had a rheumatic spell right before all this happened. I had burning across my hips upmy back and down my thighs for about 3 months. One day it was gone and never came back.

I know this is a very confusing email, but if anyone has any ideas I would love to hear them. Thank you!!

[tshadow]

You prompted me to start looking over at your threads...very interesting to say the least!

For TOS, I will bring up our Top 5 Symptoms. From there, we also have difficulty swallowing, ear pain, face pain, and other ancillary pains that not all share.

But mainly, it is the HIGH, HIGH pain of the upper extremeties, including an area between the shoulder blade and spine that feels like a knife has been put there (and is still there!)

I think it is strange that you have an additional rib!

You definitely should have an MRI with fluid imaging or a CT to make sure that the rib is not blocking your veins / arteries in any life-risking manner.

God bless you on your healing path...it is very confusing for some of us.

I'll bump up a few threads for you.

[tshadow]

Valese,

Please check out the Top 5 thread. Also, I tacked on my big long list of TOS testing.

I did not know there was an entirely new body of research I need to do on PRN so that I can better understand what is going with my body!

Thank you so much for bringing this to our site!!!

God bless you Valese!

[Valese72]

Tshadow-the TOS symptoms are very interesting. There are some similarities with PN symptoms.

I suffer from dizzy spells all the time. Almost like a sinking feeling, but I have never heard a PN sufferer complain of that. I have floaters on and off and I also have blurred vision sometimes. The vision problems are not all the time at all, but they started about 6 years ago as well.

It's interesting that you mentioned having an MRI scan with fluid. At the time I had my MRI's done I could not have them with fluid, because I was pregnant. I wonder if the findings would be different.

I'm glad that I brought some new ideas to your attention for research. It really can be very very confusing having some of these neurological problems. Most of all, it's so frustrating not having a diagnosis and not having successful treatment for it.

[Jomar]

Valese, Have you looked thru our useful stickys too?

And your upper body/arm sx could be totally separate from the lower body sx esp since you had that spell.

[rheumatic spell right before all this happened. I had burning across my hips upmy back and down my thighs for about 3 months.]

Did the PT call yours an extra Cervical rib?
that could explain your neck/arm pains.

[johannakat]

a note on leg symptoms-

I have bilateral TOS and occaisional issues with one of my feet. My neuro believes that if part of your contributing factor in getting TOS is a tendency towards muscle clenching or tightness, that this often can cause a similar problem in the lower extremities called piriformis syndrome, where the nerves to the legs are compressed by the piriformis muscle in your backside.

SO, his answer to 'does TOS cause symptoms in your legs' is no, but factors that cause you to have TOS can make it more likely that you also develop a condition such as piriformis syndrome.

For me, i believe years of undx'ed hypothyroid symptoms contributred to long term muscle clenching and tightness..even though it was a yoga injury that really put my TOS over the edge. I do get symptoms in one of my feet, but not nearly to the extent that I have them in my upper body.

Johanna

[tshadow]

Please feel free to ask any question, as we are here to help. And you may help someone here who has some other symptoms not yet researched!!!

[milou]

Originally Posted by Valese72

Can TOS eventually cause weakness is your legs if the problem is not treated for many years?

Thank you! I usually participate in the PN forum.

Hi Valese
I think, you should hear a short version of my story. I have had many symptoms for many years. The doctors have talked about Ms and other stuf, but never came to any conklusions on this. I my self found out, i had TOS, and they agreed. Severe vascular TOS on both sides, but worst on the left. "But this can not explain all your symptoms" they said. I got a surgery on the left side with removal of the upper rib, and big part of the scalene muscle.
The next months many of my symptoms began to dissapear, and now i have only few left.
I had weaknes in my legs, fascikulations all over my body, heart skipping beats, schiwering when woke up from sleep, sweating at night,hoarsnes,Restless legs,choking when drinking fluid (or just my own spit) , reflux , stuffy ears and pain and numbnes ear and face. Besides i had the more common symptoms in arms. Some symptoms not mentioned to make the story shorter

Left of the symptoms after surgery was some weak arm-symptoms, RLS, ear symptoms and choking. I think maybe the ear symptoms are still there, because it comes from the problems on the right side, which i have not had surgery on.

You cant know for sure, but i think there is no other good explanation, than the one, that my symptoms was all because of the TOS.

My surgery was 5 years ago, and i have been dealing with this for many years, starting with Raynaulds syndrome (I know now) both feet and hands
Heart skipping beats so much i thought i would die. Then one thing came after the other. There is no understanding from doc or hospital that these things have the same reason, but i am convinced.
The reason i am researching again is, that i am beginning to get more symptoms from the arm and shoulder and i am afraid, the whole thing will get worse again.