Left leg stumbling - seeking support

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Left leg stumbling - seeking support

Postby Xina535 on July 29th, 2014, 5:52 am

I wrote about this yesterdy in my '1 year' post, but I am in a panic like none before. Scariest thing yet is happening to me right now.

My left leg:

Freaking out about - new things:
-feels unstable
-when I stand on it for a few seconds only, it get shaky
-I feel like I need to pay attention or try harder so that I wont stumble
-I have stumbled recently, more yesterday and today. THIS the ultimate freak out for me.
-when I go up stairs, again, I feel like I have to try harder with my left leg
-same when I tried walking on my heels and toes, I could but leg was shaky and again, I feel like I had to try more.

What seems to be not related to MND (what I keep trying to tell myself):
-Pain - the outer part of my thigh is tight and painful. When I touch it, it feels worse a little above my knee, but on the outside. I do feel some sort of pulling pain up my thigh into my hip area. This is why I am thinking IT band? No other part of my thigh hurts or is hard. It is really just this area where the IT band runs along (what I am thinking).
-Clean EMG in my left calf/shin area and left upper arm 2 months ago
-I had this left leg pain/tightness before and a shot and physiotherapy helped, but it's back. When I had this before, my left felt heavy, but not this time it just feels uncoordinated, not really heavy, but I keep saying, "Ok, I had a problem with this leg before which went away".
-I had pains up my calves last night, coming from the pains under my feet. So I think "Ok ok, pain, bring it on, I dont care how painful things get, pain usually means not MND, so I'll take all the pain you can bring!"

Notes - the MRI of my lumbar spine showed no pinched nerves. Was clean, besides a little bulging. Overall body twitching has died down, but I still get twitches in this left leg and my right hand (where I am also having an issue still).

I am going to see my orthopedic this Friday. Hoping he can give me a shot again maybe. Until then, I really need people to 'talk' to who understand this symptom and fear. I haven't been this scared before....especially when I think of my right hand issue and this new pain under my feet, I feel I could pass out from being overwhelemed. :cry: I already took extra anxiety med. (opipramol). I don't even want to get up out of my chair so I don't have to feel how messed up and weak my leg feels, or stumble again. :cry: :cry:
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Re: Left leg stumbling - seeking support

Postby Nytviolet on July 29th, 2014, 7:15 pm

Hi Xina, although I've had widespread fascics for 17 years, I've never had an EMG, and although my self testing (walking on toes, good grip strength, running upstairs etc) are fine, I simply cannot stop focusing on the FEEKINGS of weakness and aching / twitching in my left bicep and left leg. I know they say "MND is failing, not feeling", but I finally have a neuro appt for 8/4 and I'm making myself nuts! I fervently pray that we will see each other on here in the future ---free of our fears. I'm exhausted right now, (whole body fatigue) but I know that stress plays a huge part in this. I pray that the new medications in clinical trials for MND will prove effective, so (just like with MS, there are ways to control symptoms, slow or halt progression and give folks some hope. I wish you peace and harmony. Hugs.
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: Left leg stumbling - seeking support

Postby leroyb on July 30th, 2014, 7:32 am

I follow the research and trials closely and I really believe they are getting closer. There are a couple of things in trial right now that look very promising...(not withstanding there have been 160 clinical trials so far and one drug on the market from them) and that's not even including Brainstorms Nurown which could be the best of all. A guy from the Mayo Clinic was quoted as saying that they'll be able to turn it into a chronic but manageable condition very soon like they did with MS in the early 1990's.
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Re: Left leg stumbling - seeking support

Postby Xina535 on July 30th, 2014, 4:15 pm

Nytviolet wrote:Hi Xina, although I've had widespread fascics for 17 years, I've never had an EMG, and although my self testing (walking on toes, good grip strength, running upstairs etc) are fine, I simply cannot stop focusing on the FEEKINGS of weakness and aching / twitching in my left bicep and left leg. I know they say "MND is failing, not feeling", but I finally have a neuro appt for 8/4 and I'm making myself nuts! I fervently pray that we will see each other on here in the future ---free of our fears. I'm exhausted right now, (whole body fatigue) but I know that stress plays a huge part in this. I pray that the new medications in clinical trials for MND will prove effective, so (just like with MS, there are ways to control symptoms, slow or halt progression and give folks some hope. I wish you peace and harmony. Hugs.


Thank you, same to you <3 it's so scary, all of it. Please let us know how your appt goes!

I went to my primary doc today, since my ortho can only see me on Fri. My reflexes were ok/same in both legs, but my left leg was less sensitive than my right, indicating like a numbness to an extent. I have a really painful point in my butt, so she thinks tense muscles in my butt or also back are compressing neves, and gave me acupuncture (she's a homeo kind of dr., so she doesn't have like painkiller shots). She told me to go back tomorrow for the same, but it really didn't help me at all. May just wait to see the ortho. Thinking when there is lameness going on, yea, a little more punch is needed than acupuncture to get this back in order. Feel somewhat better mentally, realizing this seems to be a mechanical issue (coming back), you know though, the MND fear is always there lingering.
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Re: Left leg stumbling - seeking support

Postby Xina535 on July 30th, 2014, 4:18 pm

leroyb wrote:I follow the research and trials closely and I really believe they are getting closer. There are a couple of things in trial right now that look very promising...(not withstanding there have been 160 clinical trials so far and one drug on the market from them) and that's not even including Brainstorms Nurown which could be the best of all. A guy from the Mayo Clinic was quoted as saying that they'll be able to turn it into a chronic but manageable condition very soon like they did with MS in the early 1990's.



Whoa what?!?! Thanks for this info! I can't really read or google that stuff. Start sweating, get panic-ey...
That's good news! You mean ...a cure for ALS right? What is Brainstorms Nurown? The name of a potential treatment/cure?
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Re: Left leg stumbling - seeking support

Postby leroyb on August 1st, 2014, 3:19 am

I don't think cure - more treatment as none of these treatments fix the underlying problem. Scientists in Japan have halted the process in mice using gene therapy and now they are moving onto primates so that is still a long long way off but that would be a cure.
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Re: Left leg stumbling - seeking support

Postby Nytviolet on August 2nd, 2014, 11:23 am

Hi Xina, I also wanted to add that your symptoms come and go (not typical of MND at all). If the injections helped before, perhaps you should consider trying them again? I'm so tense about my neuro appt on Monday that I'm getting a therapeutic massage today to help unwind. When my stress is lowered, my symptoms are much less (although never completely gone). Keep me posted on how you're doing. Prayers & Hugs
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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