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Cc333

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Hello all,
I hate to be a bother to you all but my obsession is taking over. And for that I apologies to you, myself and family. I have been lurking on the forum for over a year now and i finally gave in to making a post...hopefully to get some insight.

My body started feeling different/off/lightheaded 2017/2018. I always chalked it up to allergies. My excuse for everything. The off feeling never went away and I would tell myself if it was serious then something would have happened by now. My way of coping, i guess.

February 2019 my mom went to the ER(pneumonia/she's fine) and it really messed me up. Never seen my mom so helpless and the thought of losing my mom killed me inside. My body went crazy the day she got to go home. My Symptoms at the time - random twitches/tight throat/resting my head on shoulder/awkward tight feeling in upper chest/zaps tingling all over body/non stop pulsating feeling in head/my collarbone is not even - left side sits lower than the other/when walking i would feel unsteady, like I could tell the ground was uneven if that makes sense...also thought i was dying especially when I got my 1st panic attack. Never experienced one before...Was told I have depression/anxiety. I fought hard that I didn't bc im a "man" and "tough". I can now honestly admit that i have it...im not tough.

I have seen:
ENT/Neurologist/orthopedist/rheumy/family dr.

After a plethora of blood test only thing to come up is HLAB 27(mom has ankylosing spondylitis) my symptoms did not match up to AS - according to rheumy.

EMG: done on left top of hand between thumb and pointer finger along with right calf muscles(multiple areas) - all normal.
NCS: also normal.
Cat scan: head was clean
Mri: cervical spine showed minimal neck issues on the right side. Did not explain left arm issues and begnin lesions on neck. Was told they are normal. Ppl have them all there lifes and never notice.

Through out all this my main worry became MND/ALS/PLS and all the other MND's that relate to ALS. It has taken control of my thoughts for a year.
After my last visit with my nuero(discussing emg results) we did the clinical exam again and all was good, she suggested I probably have Functional Neurological Disorder when I told her i felt some discomfort/odd sensation in my left elbow when performing strength test.

Symptoms continue - body twitching or fascilations/compared to right arm (dominant, my left arm is weak(shoulder girdle/shoulder blade/shoulder/elbow/wrist/ring finger and pinky finger) - it feels limp/light like its just a lifeless arm/an unstable sensation/i think there is atrophy on shoulder girdle. I always cary my arm like its in a sling or in my pocket.
Right ankle feels loose, like the ligaments/muscle on the out side of my ankle/leg arent firing as one unit. My toes feel loose too and they are less resistant to pressure. I can still walk on toes/heals. Passed the clinical strength exam and reflexes(twice). 1 normal EMG.
This was hard to post. I know its selfish i was just hoping you could provide some insight.
 

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lgelb

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I am sure it's hard to post this, and I'm glad that you did. But you know the answer already.

You don't have ALS. You might benefit from seeing a shoulder specialist and asking about a PT evaluation, focused exercise, improving your bed/chair, etc.

If you had clinical atrophy, someone on the list would have seen it. If you had clinical weakness as a result of a neurological problem, it would have manifested by now.

Judging by your build, you might have diabetes, pre-diabetes, other endocrine issues, hypertension, and/or other conditions that can manifest in some of the ways you have described. A good internist, perhaps in concert with a dietician and/or exercise physiologist, can help you maintain optimal physical health, which is valuable at any age.

If ALS has been in your thoughts for a year, it's time to stress-test those thoughts in counseling and work on a plan that allows you to focus on your life's work and happiness -- not a disease that you don't have.

Best,
Laurie
 

Cc333

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Thank you for your words Laurie, means a lot!

With being 28, I know the chances are very slim but then I think it may be another form of ALS like PLS. What keeps me reeled in is when I use my left arm - everything feels awkward with a weak sensation. As if the muscle/ligaments that whole the shoulder/elbow/wrist are weak. Same with the right ankle.

When i asked my neurologist if this could be a shoulder issue she mentiond the MRI of neck and EMG/NCS would have shown something - mentioning it could be FND.

I hate that i posted those pictures...they tested me for diabetes and didn't have it. That was also 40 pounds ago. I use to be into lifting weights(especially bench press) Benching 275 pounds 8 reps by 4 sets then 225 pounds 12 reps by 4 sets so i thought maybe i had hurt myself back then. The thing is i obviously do not work out anymore so i dont know what could be causing these issues. Besides the strenth tests that i do daily. I pretty much sit at my office qnd sit at home.

You are right about seeking help for the anxiety. Im looking into it.
 

Nikki J

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If your neurologist raised the question of FND you should explore it. It is not code for you are crazy but a real diagnosis that has some specific signs. It is also treatable. It can cause or coexist with anxiety of course and you should treat that as well. There may be an FND clinic at one of the big teaching hospitals in Dallas
 

Cc333

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Thank you for the feedback! I am looking into it.

I guess my question is does this sound anything at all like it could be PLS/ALS/MND?
Compared to my dominant right arm - the left just feels awkward/less coordinated. I have to really focus hard to use it. If i do have something wrong with my shoulder, would that cause the awkwardness/coordination issues? (Exam wise nothing has come up)
Also, on my right ankle on the pinky side, the foot feels like its hanging and when I plantar flex, my foot goes further down then my left. Like the ligaments and muscles are not working to flex downward on that side its a loose feeling. I can heel walk and toe walk. When i curl my toes they are weaker then my right.

It seems to me that after the EMG things have slightly progressed.
 

Bestfriends14

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Your question has been asked and answered already. Please continue to work with your doctors.

Best of luck to you and take good care.
 

Cc333

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Just wanted to update...had an MRI of my left shoulder that showed bursitus and tendonitis. Havent met with the ortho for the full report but could this be the cause of my left arm issues/awkwardness mentioned above?
 

lgelb

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Cc333

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Laurie, thank you for helping me up to this point! It really means a lot. I just cant wrap my head around my symptoms. Last Thursday I did some jump squats and i was able to perform them but the next day my right ankle felt looser then before. And today it continues to feel that same way. When i walk its like there is less resistance when I take my step and feels loose. When I plantar flex its like it gives instead contract as a unit. Same feeling with my toes. From the heal to the back of my calf also feels stiff. This is also the leg that I had and EMG of that came back normal. This does not feel normal so I dont know what to do/think.

Also my muscle twitching is body wide but mainly in the areas that are affected most- right ankle and left arm.
 

lgelb

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The mind plays tricks. And if your exercise regimen has been affected by your concerns, as you acknowledge, all the more so. When you stop working out, there can definitely be changes in your body. I would consider resuming workouts under PT supervision (working your way back up) if there is no medical reason not to; you could consult your doc on this point.
 
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affected

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PALS don't feel any different at all - they don't like joints are loose or whatever. They are totally surprised that they simply can't do things when it feels like it should simply work. This is great news when comparing to your symptoms.
Please follow the advice and work with your doctors as twitching means nothing at all. I wish you the best.
 

Cc333

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So any looseness would point away? The looseness/unstable/light limb sensation seems to be affecting the hip and knee as well...I had ACL surgery 10 years ago on this same right leg. And when I walk on my heels I get this sensation that it wants slap down. This progressed after doing jump squats a week ago.

My orthopedist really didnt help with my right leg issue but I will be starting PT next week. I just feel like its slowly getting worse instead of better.

Again I apologies for my selfishness in posting on here. I hate that its come to this.
 

Bestfriends14

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Your symptoms point AWAY from ALS, not to.

Any other questions at this point, really need to be brought to your doctor, not dying people and their tired caregivers.

Best of luck to you and take good care
 

lgelb

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See how PT goes. It may be darkest before dawn. Still no reason to think about ALS.
 

Cc333

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Im hoping to start soon on both PT and seeking counsiling...Im just having a tough time letting go of these thoughts. Especially when I feel the looseness in my right ankle/toes. Like its barely hanging on by the muscles and ligaments.
At least now I know my shoulder has tendonitis and bursitis so that can explain my shoulder symptoms. But my elbow and wrist also arent 100%.
Bestfriends you are right. I am meeting with my Dr next thursday. Im hoping I can do another EMG. With my ongoing symptoms a 2nd normal Emg would put my mind at ease.
 
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