Symptoms last 3 weeks

[Lmn010]

32 y/o male.

Three weeks ago I had stabbing pain in my hand in the fingers that spread to my other hand and both feet. Was just intense stabbing pains in all different fingers and wrist. Originally looked up peripheral neuropathy and was settled it was that. Went to a primary who laughed me off and then a neuro who took it seriously and did a comprehensive blood test for auto immune and other vitamin and markers. Waiting on labs still.

Since then the symptoms turned to fasciculations in my left calf mainly but some also in my right calf and a few in my arms. I still have my strength but I am in my own head about this after reviewing all ALS symptoms. These fasciculation have been constant 24/7. A few days later I developed twitching and some stiff muscles in my arms which I woke up today and they were mostly gone. I also have had some very intense stabbing pains deep into my quads occasionally in the last few weeks.

I then went on a 4 day stretch where I couldn’t sleep and was on about 5 hours sleep in this time and almost went into psychosis. I would lay in bed for 8 hours and not sleep. I finally was able to sleep and woke up drenched in sweat heart pounding and couldn’t breathe. Called EMS and my vitals said oxygen 100 and ekg normal. I still can’t sleep at all with tingling in my calves.

I also feel like I can’t breath as well as before.

Before this I had almost 0 ALS symptoms. Played tennis twice a week and lifted 3x per week. Some normal fatigue here and there but always felt fine. Always super agile with great reflexes. I know EMG’s are necessary but I’m waiting on my blood work before I take one.

Thank you

 

[ShiftKicker]

Hello-

Please make sure to read here: Read Before Posting

Twitching absent the hallmark symptoms of clinical weakness/muscle failure would mean your symptoms are pointing to something else. Along with pain and what sounds like pretty severe sleep disturbance, a neurologist would not be considering ALS as a possibility. Keep working with your doctors to figure it out, but ALS would really not be on the radar here.

Take care

 

[Lmn010]

Thank you for your reply.

Bloodwork came back and negative for autoimmune markers. Still very concerned as the fasciculations have been mostly on left leg and constant. Plus twitching and tensing in arms.

 

[ShiftKicker]

Your best bet is to keep working with your doctors and to show them what you are talking about. The people here can only provide the most basic of information- contained in the "Read Before". As stated above, you declare symptoms not at all related to ALS/MND, so to focus on ALS due to twitching/tension, and to ignore everything else is not really a good idea and would not lead to answers about what is causing your symptoms.

Take care

 

[Lmn010]

So an update:

Both hands constantly having sharp cramp like pains in fingers and palm where I notice atrophy. Having fasciculations in my right leg too and cramping in both hamstrings and quads on and off. Along with sporadic twitching in my neck chest and back. Three weeks ago I had no indications whatsoever to even go to a doctor and was playing tennis and working with my hands. Also loss of dexterity in hands.

My question is how can this progress so fast?

 

[ShiftKicker]

Hello and sorry you are still struggling with your health. Please return to your doctor for answers about what direction to look. This forum is specifically for those with ALS and their caregivers and are unable to provide you with diagnostic help other than the information you have already been provided.

Please take care

 

[Lmn010]

can someone please give me some guidance. It feels like my hands are losing fine motor skills and they cramp and hurt 24/7. They look bony and like split hand. I have fasiculations in my left calf 24/7 and some in the right plus twitching on my upper body. I have awful fatigue. My body has never done this. My left hip hurts from walking funny I believe l.

I had an EMG done but it was not done by a neurologist it was at an orthopedic place. It came back saying everything is normal. He stuck the needles right in my calf that was twitching and hand. He gave it a bump with his finger and didn’t have me flex. My neurologist who ordered that test now wants to do MRI of brain and spine. I feel like I have exact Als symptoms. Scared and no insurance so paying out of pocket for all this. Can someone look at my EMG and tell me if it’s assuring or just could be a false neg

I have no one else to turn to at the moment

 

[Nikki J]

If your neurologist ordered the emg then they must be satisfied with the examiner.

Your report looks perfect and fwiw the tracing looks nothing like the abnormal ones from my emgs

You do not have exact ALS symptoms. Shiftkicker already told you it didn’t sound like ALS

It is extremely unfortunate you do not have insurance. You need to pursue this issue because you never know what could happen. If you are poor NJ has expanded medicaid. If you do not qualify then you should look at aca for next year if you can not get it through work or a partner

 

[KimT]

Did your neurologist talk to you about cramp fasciculation syndrome? It's a benign condition but usually treated with Valium or a muscle relaxant.

Your EMG would show something if it were ALS.

 

[Lmn010]

Hi, so yes I have heard about BFS and he mentioned it could be that. I am just experiencing so much pain in my hands. I was a healthy 32 y/o male with no issues before this ever. What is concerning me is my hands seem to be falling apart. Thenar muscle and palm side showing pretty obvious atrophy. When I hold anything or even just rest I’m getting constant cramps in my hands all over including palm and fingers. It hurts just to do anything. It hurts while I sleep. I also have the cramps and pain in my feet from it but less so.

I truly would like to trust the EMG but it’s hard. All I can say is I have had constant facsicatioms in my left calf constantly for almost a month and he put two needles in there to test and it was “silent” at rest. Would it show something even if he’s not an expert at EMG’s? As I said he didn’t have my flex my muscle but seemed to poke it or possibly angle the needle in multiple directions I’m not sure. He looked in 20 muscles and they were all silent at rest. I am just lost and seriously doubting the test. I hear so many people say the EMG is only as good as the examiner. He is experienced with EMG’s but not for ALS. He knew to look for sharp waves and abnormalities he said and would do the best he could.

 

[Nikki J]

Emgs are emgs. They see what they see. Like having an xray to look for pneumonia and the radiologist sees cancer Emg doctors don’t do different emgs for different diagnoses. The technique is the same. 20 muscles is a lot! Silent at rest means no acute denervation which is a vital part of an ALS emg.

I recently learned from a neurology resident that in the US you have to do at least 200 emgs supervised before you can do them solo and bill for them. So anyone doing an emg here has done a lot before they even start practice. Anyway it isn’t hard to see spontaneous activity. I am not an electrophysiologist but I could see it on my own emg

 

[Lmn010]

He did indeed know what he was doing. Can anyone offer any explanation on why some people are asked to flex and others aren’t ?

Awaiting blood work for CPK, Aldolase, and a bunch of thyroid markers. MRI’s coming Thursday. I don’t really know what to think since everything besides my EMG seems to point towards it

 

[KimT]

Perhaps he saw that there was no acute activity. You had a lot of muscles tested.

Cramp Fasciculation Syndrome is different than BFS. You can have terrible cramps.

 

[Lmn010]

As far as my new blood results everything was normal. T3 was right at the bottom of range at 77 with a range of 71-180. CPK was 67, Aldolase 4.1

My MRI was moved to next week. I’m mentally in a terrible place and my symptoms are pretty rough. Hand/foot cramps which are pretty much constant and more painful than typical cramps (sharp). Fascics in left calf and now in right calf. And some general twitching in upper body. I feel very stiff on my left leg when I walk. It’s just crazy to me how before 6 weeks ago I had 0 symptoms, no twitches cramps at all. There was literally no buildup and my friends are shocked at all this. I’m just thinking out loud how it could affect all these muscles so fast. It would have to have been almost dormant as I had no trouble doing things before or cramps.

I have a new neurologist appointment next Thursday for a second opinion. I just don’t understand how an EMG in my calf would show clean even if the examiner was not a trained neuro. He was still experienced. I am hoping that everyone here is doing okay and appreciate the engagement as I don’t have much help at the moment.

 

[KimT]

Magnesium helps my cramps. Worth a try.