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At wits end! Need advice - leg weakness, pain, now in left arm and shoulder

veryworried23vveryworried23 Posts: 15
Hi - I am new here. I realized I needed to reach out to people who suffer from leg pain issues, tell my story and see if anyone has any advice for me, because I am at a very low point and do not know how to cope. I appreciate everyone's time who reads and responds. I am 34, female.

I've had left leg issues for almost 2 years now. It started with a burning sensation I had one day after work (I sit at a desk all day), and from there I've been going through cycles of lower left back pain and a really messed up left leg.

It will go from getting very heavy, where I need extra effort to bring it with me or up any stairs, etc. I haven't been able to walk the same for a long time. Visually, it looks ok, but for me, it's off. One time I had to run to catch the subway, and I kept feeling like I was going to fall, but didn't. After I got on the subway, it twitched and vibrated and tingled for a good hour afterwards, after just a little sprint to catch a subway!! This weakness/heaviness has been accompanied by lower left back pain (but not always). There is one certain spot in my lower back, next to my spine, that will always come back pinching me or poking me. I'll get very hard muscles, on the outer thigh and in my butt. Touching them hurts big time!

At night, I can like FEEL sensations in my leg, like as if it's going numb, or as if it is ....dying. Not painful, and not restless leg syndrome, and not actually numb (I can feel when something is touching my leg) just feeling like it is verrrry tired and gets heavier and heavier. hard to describe.

Treatments have been cortisone shots in my back plus physiotherapy. I've had 5-6 shots now. AT FIRST, this helped like the first two times. Now, the shots do nothing and I feel I get nothing from the prescribed 6 sessions of physio.

Tests: After I started the first treatment plan, my leg felt better. then I had a lower back MRI, and it showed nothing (it took such a long time to wait for the MRI). I've had nerve conduction tests, all normal. I had a questionable EMG in my left calf, I say questionable because the neuro is not considered the best for EMGs, and it was before my leg was in the bad shape it is now, but the results were normal then. SO I have no real diagnosis, the orthopedic thinks it's an irritated nerve root where he will shoot with cortisone.

I've been scared of ALS, now for 2 years. Just under total panic and freight about having this disease. I am scared that I will start tripping over things and falling and then will get foot drop.

Then it happened: I fell down a circular stairway this morning. My husband said it could as well have been him, since they were steep and narrow, he actually said at the top when he saw the stairs "oh man, I'm gonna fall". And it was me who fell. Luckily I did not hurt anything.

But what he thinks is coincidence, I think is because this is the start of now ALS happening, where my left leg did not want to come with me on the stairs, and I am going to start falling more and more. Fear of ALS came from my BFS (benign fasciculation syndrome - but I am not twitching really anymore).

So I have a left leg, that is heavy when I pick it up in the air, way heavier than my right, can't use it like I used to, painful places of hardened muscles from lower back down over my butt and my outer left thigh to my knee (in physiotherapy, they said these hard areas were patches of muscle tissue glueing themselves together and they would try to knead them out, hurts SO BAD when they try!!), and this poking/pinching pain in my left lower back that comes and goes. AND since December, I've been getting the SAME THING in my left arm. I had immense pain suddenly in my left neck/shoulder, it went into my arm, I couldn't touch my arm. My whole arm started twitching/vibrating/pulsating/pinching/tingling, AND GETTING WEAK/TIRED/HEAVY, and now I am in physiotherapy for that too!!! They are saying it's coming from my cervical neck since there is also a certain point that when they touch, I get dizzy, but again, no diagnosis! The x-ray showed nothing. This is just fueling my fears :( :( and I don't know how to cope. I am on anti-anxiety meds and in therapy, but it's not enough.

One last thing: in August last year, my leg went "lame" for the first time, where I wasn't able to bring it with me as usual. I received two cortisone shots....it took everything away! Everything was amazing and great! Until a day in November when I went swimming, breast stroke. That night, the pain point in my left back started up agian, BAD! And soon after, my leg problem again. Since then, I can't get it to get better anymore! Orthopedic told me that I shouldnt have swam breast stroke, but I didn't know! He said it was "obvious that I should not do that" - what!? I thought I was doing something good!

Is there anyone out there who can tell me good things? I am searching to see if people who suffer from sciatica or related have had these things happen and after reading this, can reassure me.....and perhaps tell me where to go or what to do next!? I am in Germany, so the methods and standard of care is different, but maybe there is something out there I haven't heard about that I can look into?? I've started TENS unit therapy tonight on both my leg/back and arm/neck, and will see how that goes.



  • LizLiz Posts: 7,832
    edited 02/15/2015 - 6:51 AM
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    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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