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Tiber2011

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Joined
Jun 21, 2013
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21
Reason
Learn about ALS
Country
US
State
Il
City
Chicago
Background: new and stressful job. I'm a 28 year-old male with no other health problems, but with a history of depression plus hyper-mobility in joints. I pray for you all now every day.

1st week of March, had a bad back spasm. Felt like a burning bulge. Went away but left my back feeling sore, than a week later I had spasms and fasiculations in other parts of my torso. Went to ortho doctor, put me on physical therapy,

During physical therapy, I developed pain, especially with hamstrings behind knees. Wouldn't go away. Kept getting worse.

Saw 3 neurologists - had full 3-part back scan on a high-powered machine and brain scan on a brand-new enclosed machine. Had EMG-nerve conduction study. My left leg was fasiculating during the tests. No signs of MS or ALS. Had bloodwork done.

Going to see a 4th (MS specialist) on Tuesday.

Continued to feel some tingling in certain fingers and/or toes, or body parts. Currently I feel like a tingling/snapping in the palms of my hands and bottom of my feet on occasion.

Yesterday, I felt my right pinkie twitch when my arm was extended. Have also felt a snapping in left foot little toe.

Have felt tongue twitch only twice, over 2 months ago. I was nervous those days, though. My legs still feel hot and heavy with burning pain sensations, especially after I start my day and get up.

However, I can walk. I've carried a big box straight up over my head with arms outstretched just to see if I can on Sunday. I even tried running down my driveway, and I could as of Sunday.

Now, 6 weeks after PT, it hurts to exercise my left left and the right sometimes is sore. I get stiff, achy and weak feelings, especially while lying down or standing. I can't really stand up in one position for more than 3 minutes because then I feel a tight, painful feeling behind the knee and in the calf. It's like a shin splint with pain in the thigh.

I can sit and feel relatively ok. I cannot sleep the whole night through. I cat nap. I sleep on my back - might irritate an arm and make it spastic.

Went to the last neurologist; one of the best neuromuscular in the city at a University hospital. He did autonomic tests on me and stated I "probably" have "small fiber neuropathy." He said he ruled out MS and ALS, too. He believes I have Elhers Danloss.

My right eyelid has been twitching a lot through this. I've had floaters in my eyes since I was a very little boy, but they seem to have gotten a little worse lately. Went to my regular ophthalmologist and another, both didn't mention anything about neuro diseases and said I don't have RD.

I usually sleep on my back now. Last night, I slept on my left side, and I woke up with my right thigh in pain. I did an MRI of my left knee this Tuesday. I also sometimes feel tightness in the armpit regions, and occasional achy pain in upper arms and forearms. Knees and ankles snap a lot.

I have felt spastic tightness in thighs and arms, but that's not always present. I still get fasiculations in calves and front of legs, and occasionally in the shoulder area. Once, while looking at my right hand on the mouse of a computer, I saw my middle finger seeming to move sideways on its own.

I talk fast now, sometimes choose the wrong word or blend a word, but I can eat and drink.

I get a neuropathy-style burning pain in the right foream. Sometimes my left foot tingles.

When I sit down, it feels like I'm sitting on my pelvic bones now.
What could make my arms feel tight and legs in pain? MS? Stress? Hypochondria? I don't do any physical activity lately for fear of pain in the legs.

Should I do another brain and back MRI? Another EMG?
 
way back in 1977 I had a terrific burning sensation in back that developed into severe back pain. long story short had back surgery in feb 1978, three reptured discs all pain gone
 
Thanks, Pearshoot.

Today my right upper arm, when his, resonates like a funny bone into my fingers.

I did the back MRI after I began physical therapy. I practically had to beg another DR for the order. I kept telling the 1st one "Why do you suspect it's x when it could be y, unless you had internal imaging?"

I wonder: could the physical therapy have fixed a ruptured disc, if it was minor, than the MRI would have been clean?

Could an EMG/nerve study been conducted badly?

Could all these burning pains, fasiculations, twitching and such be caused by weak glute muscles?

This has been going on since March 9. I can still get myself up off the ground without use of my arms. I can hold my arms above my head; I can pick up something and hold it straight ahead of me (fatigue will set in soon).

I have to stand up in a wedding tomorrow, and I'm deathly afraid.

In may, I had to go to an event and I was on my feet all day. By the day of the event, I got tingling in my left foot, with pain/tightness/tingling going up my leg. Almost sure it was going to give out.
 
You mentioned small fiber neuropathy. I was tested for that with two small skin biopsies of my leg. I believe that only 1 lab in the country performs this test but I could be wrong. No lab in my network does the test so it was sent out to a lab named Therapath.
 
This is an Als forum, you don't haveAls or Any symptoms of Als .
 
military parade you stand on feet for long periods of time, always had tingling in feet quit trying to convince yourself you have als. go away and quit dr goggleing
 
My apologies; I did not mean to offend anyone here. I'm looking to gain more insight and answers, and I thank you all.

It's just that I am not sure if I went to the dr too soon? Would something have shown in April and May if symptoms suddenly came on in March?

My legs feel weak, have twitches and fasiculations in them, and my arms are both spastic. One arm has the right pinkie moving on its own.

I feel my hip bones when I sit on a hard surface now, too. Since April, I've felt the leg issues, but everything has gotten worse in the past few days.
 
Look for something other than ALS. Clearly, you don't have it and we aren't doctors and can't diagnose you. Good luck.
 
Like all the previous posters before me have replied you.
Take ALS off the table and focuse in other things. I'm not a Doctor but your symptoms definitely don't sound like ALS to me.

So, go and see a real Doctor so he/she can make a correct diagnosis of what you might have.

Good luck.
 
Hi,

Your symptoms sound quite a bit like mine..It may not be ALS but it is not fun that is for sure! I had a virus and infection when mine started, did you? My doctors are tentatively diagnosing me with Post Viral Fatigue or CFS/ME. I had the same issues with PT. I was really hoping PT would help and all it did is make it so much harder to walk after for days. My husband even said that I was walking worse and I could hear my foot slapping the ground after, ugh. It has improved some now. My GP is sending me back to my rheumatologist and I think they are going to try and treat me for the chronic fatigue fibro issues. Also, I may start acupuncture. If that does not help I will go back to the neuro, but I had an EMG a few weeks ago and it was normal. So, it seems to me to try something else and not focus on something I hope to not have. You may want to try and do the same. Good luck and do not give up if you feel like your symptoms progress, keep going. I have a friend whose daughter had a neurological illness (not ALS) and was only diagnosed after 7 years and going to Mayo..
 
no offense taken. those that have problems think we are doctors. stay in the medical arena and if and when diagnosed with als you will be welcomed back with open arms.
 
Thank you for all the replies. Again, I don't mean to offend.

I just feel as though the pain in my legs is getting worse literally by the day.

It's just that I am not sure if I went to the doctor too soon? Would something have shown in April and May if symptoms suddenly came on in March?
 
Asked and answered.

Go back to your doctor to discuss your increasing symptoms. We are not doctors.
 
tiber...depression is a terrible thing.....get yourself checked out for that,,,,do it,,,,,johnny
 
Low serum Uric acid levels
 
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