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ALS/PLS or MND? Please help
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ALS/PLS or MND? Please help

Hi,
Thanks for taking the time to read this because I am seriously so scared by what is happening to me that it's ruining my life. I've been getting muscle twitching for about 16 months, and perceived weakness in my legs, particularly my right leg. I've also lost weight during this period (approx 24 lbs, mostly in the last 2 months). When I walk and my left leg is forward it feels tight/weak in my upper right thigh/groin which has affected my gait. It's almost like a minor limp but you might  notice it if you were watching me walk. When sitting on a toilet seat or whenever there's pressure on the back of my leg (hamstring) I get pins and needless.

About 15 months ago i had an emg and ncv that was completely clean. It didn't pick up any fasciculations (but i wasn't twitching at the time of the EMG and NCV, not sure if this is significant). Then 12 months ago I had an MRI or the brain, spine, and cervical spine which was also normal. I've had 4 neuro exams (12, 10, 5 and 1 month ago), all of which were normal and the neurologist ensured me that I do not have anything neurological. However the numbness in my right leg has worsened and a second EMG and NCV (5 months ago) came back clean (again I wasn't twitching during the actual test) but they did find that the "right femoral cutaneous SNAP is absent, thus in keeping with right sided meralgia paraesthetica", which i've been told is essentially a trapped nerve in the right thigh. The report concluded that "nerve conduction studies of the upper limbs are within normal limits, with no evidence of entrapment syndrome or brachial plexopathy... EMG examination of the limb musculature reveals normal rest and volitional appearances, with no remarkable spontaneous activity, e.g. fasciculation potentials or neurogenic MUAPs seen to suggest neurononpathy/anterior horn cell dysfunction".

Like I said I wasn't twitching at the time though, if i was and it had picked up the fasciculations would it have meant something entirely different and more sinister? Also, since then (in the last 2 months) my left wrist had slimmed down and at times I get tingling in my ring finger and little finger as well as discomfort and tightness in my left arm (there's also tingling in the left elbow). When I say my wrist has slimmed down I mean the following (just to be clear), the muscle in my forearm (under-arm not on top) ends abruptly approx 2-3 inches before the wrist, this happens when I clench my fist. So it's a stright line from my wrist to that point, before the forearm muscles (under the arm if that makes sense) begins. On the right arm this isn't the case, there's a natural curve from the wrist to the forearm. My left wrist feels a little tight, like there's tape wrapped around it.

I've had a series of blood tests done (latest of which was approx 3 months ago) for muscle wasting, etc, and it was normal. About 10 months ago I also had blood tests done for Lupus, muscle wasting, uric acid, lymes disease, etc. Everything was normal except uric acid which was high (i already have gout but with medication those levels are normal now at 425) and low vitamin D (which is also normal now at 64). My ESR (for inflammation) is also now normal at 9, it was raised a number of months ago but don't know what the number was.

I've read things on the internet where people were diagnosed with minor issues and it turned out to be ALS or other MND and the anxiety is ruining my life. I'm simply constantly scared because my body doesn't feel right. Last week or so i've also noticed some unusual sensations in the left side of my face (like the skin is been stretched downwards). I've also had a burning sensation in my left forearm and when my left wrist or left thigh (left thigh hadn't had any symptoms until the last 2 weeks or so) gets cold or hot it takes longer for the temperature to come back into line with the rest of my body. Please help me, what's wrong with me? Do i have ALS, MND, PLS, MS or some other neurological disease?
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4 Comments Post a Comment
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Avatar_f_tn
Hi there,

Here`s one thing I can tell - do NOT post this story on any of the ALS forums, as they will fire back at you like you won`t believe. Trust me, I`ve done it.

You`ve had multiple EMGs and neurologist exams, and everything has come out clean. Thank god, right...well, not necessarily. And this is where I completely understand your situation, as this is where the anxiety comes in. It will do crazy, crazy things to you. Many of your symptoms can be explained by anxiety, such as the twitching and the perceived weakness (which is drastically different from clinical weakness). The atrophy you talk about could be actual atrophy, from a completely unrelated condition, could be perceived, or could simply be weight loss for another reason altogether.

To address one of your points you make a couple of times, it is not necessary for fasciculations to be picked up on your EMG. Your fasciculations absolutely sound to be benign. If they were not, regardless of whether or not they were happening exactly when the needles were inserted, the testing would have picked up other changes suggestive of active denervation, such as fibs or positive waves. Which none of the tests obviously did. If you haven`t ever researched benign fasciculation syndrome, I strongly suggest you do. There are some great sites on the internet with lots of information.

Beyond any of this, I`m not sure what to tell you. You may have something going on, but it doesn`t sound to be either neurological or life threatening. So, I would probably take guidance from my GP if I were, as he or she can point you in the right direction. You might want to get checked for auto-immune disorders, which I know often have symptoms that mirror various neurological conditions.

Good luck!
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Avatar_m_tn
colls22, thank you for taking the time to read and reply. I've already had blood tests for auto immune diseases like Lupus, rheumatoid arthritis, etc, and they came back as normal.

I guess what scares me so much is that I don't simply have twitching and nothing else (like BFS). I can't help but feel scared at what's happening. I mean i'm in my mid-twenties. All the symptoms (including anxiety) have led me to quit my job, strain my personal relationships, etc. I mean I can't even remember the last time I met up with friends... maybe once a year ago. I know my body and I just don't feel right. It isn't normal that when I walk my right leg feels numb and my hip weak, i wake up everyday with numb fingers, etc. I just feel as though I can't cope with this anymore. In the space of a 16 months my life has been completely turned upside down.

I mean I finished uni with a degree and masters and got a promising job with opportunities to work my way up. I was already with the woman of my dreams and I had dreams for the future. Within 16 months I've been forced to quit my job so am really struggling financially, the whole issue has practically given my fiance a nervous break-down (i'm pretty sure i've already had one!), i've completely isolated myself from my friends,etc. It literally is a case of my life being dominated by 2 inter-changing emotions: anxiety and depression. I just want to be able to identify what is wrong with me, get better and live my life, but at the moment that is nothing more than a pipe dream and I don't know how to cope.
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Avatar_m_tn
colls22, thank you for taking the time to read and reply. I've already had blood tests for auto immune diseases like Lupus, rheumatoid arthritis, etc, and they came back as normal.

I guess what scares me so much is that I don't simply have twitching and nothing else (like BFS). I can't help but feel scared at what's happening. I mean i'm in my mid-twenties. All the symptoms (including anxiety) have led me to quit my job, strain my personal relationships, etc. I mean I can't even remember the last time I met up with friends... maybe once a year ago. I know my body and I just don't feel right. It isn't normal that when I walk my right leg feels numb and my hip weak, i wake up everyday with numb fingers, etc. I just feel as though I can't cope with this anymore. In the space of a 16 months my life has been completely turned upside down.

I mean I finished uni with a degree and masters and got a promising job with opportunities to work my way up. I was already with the woman of my dreams and I had dreams for the future. Within 16 months I've been forced to quit my job so am really struggling financially, the whole issue has practically given my fiance a nervous break-down (i'm pretty sure i've already had one!), i've completely isolated myself from my friends,etc. It literally is a case of my life being dominated by 2 inter-changing emotions: anxiety and depression. I just want to be able to identify what is wrong with me, get better and live my life, but at the moment that is nothing more than a pipe dream and I don't know how to cope.
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1831414_tn?1318862548
I too have had similiar symptoms! And I'd drs cant define it on a test and your not grossly disoriented nuerological they treat you as a hypopocondriac! Maybe Lyme disease since it can be inaccurate with a blood test sometimes and can cause irrational thoughts anxiety , twitches in face legs hands and weakness through limbs, I suggest a spinal tap as well as that's what I'm going to have since all of my tests and kris are negative too. The spinal flud shows a lot of autoimmune, viral infections, and neurological markers. Good luck!
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