So worried

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jaglady2021

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Hi, I am 40 years old and have had strange things happening for years off and on. It started in 2011 with sharp stabbing in my underarms that came and went. Slightly dizziness a year prior off and on where I felt like I was leaning to one side more than another, but it subsided and happens sometimes. Then neck pain off and on through out the years even prior through out early adulthood started in mid 20's. Early 20's severe lower back pain haooened one morning and not sure how but one day I woke up and couldn't move neck and back. Went to hhe ER was told after an xray I must have pulled a muscle and was given a shot ans eas sent home.

The pain lasted for over a year then went away, but around 2016 slowly the low back pain returned and I have a few good days then lost of bad days. Woke up at end of 2016 with both legs cramping severely and they felt freezing cold. Then after a few hours they had a really hot sensation going down both legs then went back to freezing cold that lasted for a few weeks then went away. Pain still there.

Twitching started sporadically in legs and then twitching started in back and arms, sometimes I get them in my face, tongue, eye lids etc. Been to all sorts of doctors, tests for autoimmune diseases came back negative but have a positive ana. Had thyroid checked ans was normal, all blood tests normal. Went to neurologist in March 2018 had mri of brain, with and without contrast all normal. April of 2018 had emg and ncs and Dr said normal except for bilateral lumbar radiculopathy in both legs. Had mri's of neck, low back shows bulges and disc protrusions in C6-7 &L5 S1.

Recently had mri in Nov 2019 said same thing but now some mild to moderate foraminal stenosis in parts of neck and lower back along with the protrusions and bulges. I also get sporadic pins ans needles feeling in hands and and fingers and a weird tingling sensation, like a cold water dropped on me, in random places. I even have sharp or tingling eye pain and sharp pains in head like on top of scalp or back of scap, that ive had since teen years.

Lowback pain now goes to sides of legs too and around hips to groin at times. My last spine dr seemed to dismiss me and say even though mri shows bulges and protrusions, it doesn't show that its pinching anything but could be the reason for my pain, which doesn't make sense since the emg showed pinched nerve affecting both legs.

My questions are 1. Even though the twitches I was having before the emg was sporadic, would the emg still have detected als, if that were the cause. 2. Was the emg done too early since the twitches weren't as frequent as they are now 3. I have radiucular type like pain from neck down both arms to hands, ans twitching and I had that pain prior to the emg and ncs, would yhe emg ans ncs have detected als if it was the cause? 4. My tongue twiches sometimes or sporadically and has sharp pains in it at times, is that how some bulbar presentation occurs, and does it cause jaw or ear pain? I feel like some days I can't pronounce words but then I'm fine afterwards. 5. I have pain off and on around my collarbone area and seems like pain is radiating from my neck, been having that pain for around 6yrs, could that be part of als too? Sorry for all the scattered questions, I'm just going out of my mind snd freaking out.
 

ShiftKicker

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Hello-

Have a read of this link: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms It should reassure you.

Your symptoms have been going on for 9 years and seem to be primarily pain related. An emg would have picked up something if ALS was on the table. You will have to look elsewhere for the cause of your pain and twitching. Twitching is one of those things that brings people to this forum because of Dr Google, but is such a general symptom. Just like having a cough doesn't immediately make you think lung cancer, twitching does not mean ALS. Twitching could mean anything and is only concerning for ALS if accompanied by a whole spectrum of other symptoms- none of which you report.

All the best
 

jaglady2021

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Hi, thank you for your response. Im sorry for the typos and tried to edit before posting but ran out of time, hope you were able to understand what I meant. I appreciate your reassurance. I did forget to ask if chronic neck cracking or cracking in other areas and stiffness in fingers that come and go and in other areas are related to als? Reason I'm mentioning it is because I've read that some with als had similar symptoms so I just wanted to ask here.
 

Nikki J

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No cracking is not an ALS symptom and as Fiona said your entire description doesn’t sound like ALS. The EMG backs that up

good luck in finding answers
 

lgelb

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I am sorry for your pain. I would go to a regional spine center for a complete evaluation. If you've already visited one, I'd try another.

There are many therapy types and procedures that may help you, but identifying the source of the most troublesome problem is important, and takes a true specialist.

Best,
Laurie
 
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