Weakness, messed up gait, 31F

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needHelp

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Aug 26, 2023
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Learn about ALS
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NY
Hi all, feeling lost and would appreciate the help.

My main symptoms are:
* weakness in left leg, clinical weakness diagnosed by 2 ortho, 1 Gp and 1 PT in hip flexor and dorsiflexor. This affects my gait, I feel the weakness the sec I statt moving, my left foot feels right all the time, same as my left pelvic floor. No pain (if I walk too much, pain is 2/10 burning above knee and groin). It feels like my knee buckles/looks up when walking due to my weird gait.. I walk slower now.
* widespread twitching
* hyperreflexia
* anxiety and depression as a result of the symptoms
* I had full body screaming cramps 3-4 times, last one a month ago.
* tightness in left leg, like my muscles are being slightly pulled even at rest.
* weakness and fatigue on left side including arm leg and face.
* no sensory no pain


Tests:
* blood tests and MRI of brain, cervical and lumbar are clean.
* emg in August showed denervatio in the arms. Left leg wasn't tested.
* emg last month was clean other than:
1. F wave showed lower numbers for peroneal on left leg
2. Motor NCS showed ulnar slowness on left side, sensory NCS is normal.
* clinical - hyperreflexia. I think the rest is fine. The neuro didn't find weakness while other doctors found 4/5 weakness in dorsiflexor and hip flexor in left leg.


Some background:
All started following an infection in May. For 2 months I had numbness on the left side (arm leg face) widespread pain, sciatica like pain in left leg, CTS like pain in left arm, weakness and full body fatigue.
All this resolved and I'm left with weakness on the left side since July.
Gait changes started around October.
I would say it's getting worse slowly.
I don't have good or bad days, each days it's the same as the day before and maybe slightly worse.

I still workout 3 times a week (pilates) but I feel the difference in the strength.

Could this be the start of ALS?
Does it sound like UMN signs?
Could it be that the symptoms are still mild and the emg missed it?

I'm 31 so age ofcourse plays a factor and doctors have been dismissive. Never had anxiety before.

Thank you for the help!

(previous thread here )
 
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A small update
Just left the podiatrist office and he said i definetily have weakness in left leg and to go backt o neuro.
all doctors are finding weakness 4/5 except for the two neuros i saw.

Any tips? Anything that could help? Im desperate and tired.
 
Not knowing what kind of infection you had, I would see an infectious disease specialist who can run labs and examine you to see if you might have a residual infection or postviral syndrome that is contributing to these issues. You might also benefit from PT to build the muscles back up.

Certainly there are other neuromuscular conditions besides ALS that are worth exploring; that's what neurologists are trained to do. But ID insight might help inform the differential.

No, I don't think you have ALS or anything like it.
 
Thank you for the reply, that's reassuring.

My main concern is PLS as the symptoms I'm showing can be considered UMN - brisk reflexes confirmed by neuromuscular and weakness confirmed by other doctors. I've read many anxiety induced posts so I know how this sounds like - but the one thing that I can say for sure is that my weakness in my left leg is constant and getting worse (I measure that by my ability to walk, get up the stairs) and just yesterday I learnt from someone with als that the tightness I feel in my hip flexor and other parts of my leg is basically spastocity. My hip flexor/pelvic floor on the left side is tight 24/7 it hurts.
All is been going on and getting worse since October.

I've been doing pilates for 5 months and I can't say that I'm getting any better. One thing that i did notice not sure if it's related - I do not get sore anymore after workout, my muscles shake during and I feel tired but no soreness (I worked out all my life I almost always get sore as I always try to push myself)

Regarding the infectious disease specialist - it's not a hot thing where I live, I won't be getting much from them.
I suspect it was either lyme or covit that reactivated EBV but no way to prove either.

Thank you so much for the response! It did reassure me..
 
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