Very scared of possible ALS

[Jeffkwv]

First of all, I want to say that I have browsed these forums a lot the past few days and you guys are amazing people with huge hearts. Thank you so much for responding to people's fears.
So, here's my concern. About two years ago, maybe a little longer, I started experiencing twitching and cramps in my right leg and feet, sometimes also in my left leg, feet, etc. This twitching would also sometimes occur in other parts of my body. This twitching is all the time too, noticeable at rest.. Laying down, sitting, not usually while standing.
Another problem I have is terrible cramps when I fully flex a muscle. It's like it will get stuck and it doesn't matter what muscle it is but if I use it forcefully it cramps and takes a while to release, and it's painful. I saw my PCP who did a couple quick tests in his office, checked strength, etc.. Said most likely not and I have nothing to worry about. That was about 8 months ago.

Since the twitching and cramps started they have always been present with no cease.. I'm now noticing the cramps more in like my neck and sides. I've done a pretty good job over the last couple years telling myself I'm fine but now it's becoming impossible and I'm a nervous wreck.

I've been weight lifting for several years and have been in decent shape. I haven't exercised in about 7 or 8 months because of pain in my hip, and the cramps and stuff. After I saw my doc again last Wednesday he said it would probably be a good idea to start trying to exercise again. This is what has me a nervous wreck now.. I tried exercising again.

I did 1.2 miles on a treadmill in about 22 minutes which is awful for me. I got light headed, dizzy and tired, I felt like I was going to pass out. I got off the treadmill and rested a few minutes and decided maybe I'll try some air squats and push ups. I did 10 of each and felt like I was going to pass out again. My muscles felt weak, twitchy and crampy. Every time I try to exercise or exert my muscles they feel tired, twitch, cramp and lock up.

This has me scared to death. I made another appointment with my PCP after reading these forums and I'm going to ask for a referral to a neurologist. I've read the faq on this forum and honestly it gives me hope but I still get these creeping feelings of dread. I left work 2 hours early today, feeling like I was going to cry. I don't know what this is and it's scaring me to death. I feel weak.. I know ALS is failure to do something but I also don't know what "clinical weakness" is.

My doc has done some blood work and all my vitamin levels are OK except vitamin D which is just a little low, not low enough to cause my symptoms.

I'm very grateful for any responses.

Also, I forgot to mention, sometimes the cramps occur in my feet and neck with no stimulation, no flexion, nothing, it'll just happen. My fear is that this is the actual beginning and now I'm just waiting on some part of my body to fail.

 

[lgelb]

Many of us have cramps that kick in for no evident reason, though keeping track of hydration and diet can yield valuable clues. Regular lifting without proper stretching, for example, is a recipe for irritated muscles. Nor is exercising after several months away really a fair test of what is happening. I would try working with a conditioning trainer as well as your PCP and I would expect a reassuring neuro consult in terms of ALS, because it doesn't present as you describe.

Best,
Laurie

 

[Jeffkwv]

Many of us have cramps that kick in for no evident reason, though keeping track of hydration and diet can yield valuable clues. Regular lifting without proper stretching, for example, is a recipe for irritated muscles. Nor is exercising after several months away really a fair test of what is happening. I would try working with a conditioning trainer as well as your PCP and I would expect a reassuring neuro consult in terms of ALS, because it doesn't present as you describe.

Best,
Laurie

Even if the muscle fasciculations are 24/7 now? They just happen constantly and keep me in a constant state of panic.

And thank you very much for your reply. My uncle keeps telling me that if I've had these fasciculations for two years now and haven't started having some real trouble with mobility I probably have nothing to worry about. But they're all the time, and I do sometimes feel pretty weak.

Thank you again.

 

[KarenNWendyn]

Your uncle is correct. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. It doesn’t matter if you twitch 24/7 or if has gone on for 2 years or 10.

“Feeling weak” is not the same as true clinical weakness which is assessed by a physician on physical exam. I don’t feel weak yet I can not walk or stand up from a chair.

 

[Jeffkwv]

Your uncle is correct. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. It doesn’t matter if you twitch 24/7 or if has gone on for 2 years or 10.

“Feeling weak” is not the same as true clinical weakness which is assessed by a physician on physical exam. I don’t feel weak yet I can not walk or stand up from a chair.

Thank you for your response, it eases my worries a bit. I'll try harder to listen to my uncle and stop trying to concentrate so much on this. I'm very grateful you would take time out of your day to respond to my concerns.

 

[Bigshawn44]

Well I have had similar symptoms for about a year. I have bodybuild and power lift since I was 19 and I’m about to turn 41 this month. Mine started in the legs and continued to progress into upper body with the constant twitching. The upper body u can’t see twitch as much as the lower body but I can feel it and the EMG shows it. Over last 6 months my cardio conditioning has declined like yours and I get dizzy when doing cardio. I also can’t perform much strenuous weight lifting due to lack of energy and it takes me a day to recover after each workout. I had a muscle biopsy done recently and found that I have PMA progressive muscle atrophy. Unfortunately in the last 2 months I have found it has started to affect my lung muscles and throat muscles. Hang in there as my drs told me to stay busy as much as my body will let me to keep my conditioning. I’m not trying to scare you but sharing my symptoms which seamed similarly. PM me if needing someone to talk to.

mod note: I moved some of the text (requoted) from this post to Bigshawn’s thread in the newly diagnosed section so others can get to know him.

 

[lgelb]

To be clear, Shawn, the muscle biopsy would not be diagnostic (though it could be suggestive) for PMA, which is a motor neuron, not a muscle disease. I trust also that you had a second opinion after the PMA diagnosis. While your dx is not the topic of this thread, we also like to be precise for those not yet diagnosed.

Also, the advice in MND is not to exercise to exhaustion, as the motor neurons that have not yet died, only have so much "current" left.

Best,
Laurie

 

[Jeffkwv]

Well I have had similar symptoms for about a year. I have bodybuild and power lift since I was 19 and I’m about to turn 41 this month. Mine started in the legs and continued to progress into upper body with the constant twitching. The upper body u can’t see twitch as much as the lower body but I can feel it and the EMG shows it. Over last 6 months my cardio conditioning has declined like yours and I get dizzy when doing cardio. I also can’t perform much strenuous weight lifting due to lack of energy and it takes me a day to recover after each workout. I had a muscle biopsy done recently and found that I have PMA progressive muscle atrophy. Unfortunately in the last 2 months I have found it has started to affect my lung muscles and throat muscles. Hang in there as my drs told me to stay busy as much as my body will let me to keep my conditioning. I’m not trying to scare you but sharing my symptoms which seamed similarly. PM me if needing someone to talk to.

I'm not sure how to PM someone on here, but I would like to talk to you if able. Thank you, maybe you could pm me?

 

[Jeffkwv]

To be clear, Shawn, the muscle biopsy would not be diagnostic (though it could be suggestive) for PMA, which is a motor neuron, not a muscle disease. I trust also that you had a second opinion after the PMA diagnosis. While your dx is not the topic of this thread, we also like to be precise for those not yet diagnosed.

Also, the advice in MND is not to exercise to exhaustion, as the motor neurons that have not yet died, only have so much "current" left.

Best,
Laurie

I'll try to take it easy for a bit but keep moving. I had a few friends of mine pull some strings at the hospital and they were able to get me an appointment on the 22 with a neuro who has specialties in EMG and nerve conduction studies. Let's me skip the PCP all together. I'm still keeping my appointment with him, as well, I guess to keep him updated. Thanks everyone for your replies, I truly appreciate it. I'll keep y'all updated, if you would like.

 

[Nikki J]

Neither ofyou have seniority to private message the other. If Shawn initiates it you may visitor message. ( those undiagnosed are otherwise not allowed to messaged the diagnosed)

shawn you said elsewhere you have cardiac issues including aortic stenosis and other health problems. The dizziness seems likely to stem from something other than mnd. Hoping, as Laurie said, that you have had 2 neuromuscular specialist opinion. Everyone should and if you have other medical issues as stated it is even more important

 

[KarenNWendyn]

Mod note: some of Bigshawn’s posts were moved to a separate thread to avoid hijacking the current thread.

 

[Jeffkwv]

Hello everyone, thought I would give an update.

Well, I saw the neuro. He did some strength tests on my limbs. He didn't really look at any of my limbs, just tested reflexes and strength. I kept my clothes on the whole visit (long sleeves, and long pants). I told him the twitching had been going on for about 2 1/2 - 3 years now. Me saying that kind of biased his examination. He said that if I had had these symptoms for 6 months it would be a different story. He explained BCFS/BFS (Benign Cramp Fasciculation Syndrome) and said that it was more common than people think and that with these symptoms going on with 0 clinical weakness he could detect and normal reflexes we could pretty much write ALS off.

Fast forward 2 weeks and this didn't please me, I'm very well aware of the fact that I have health anxiety and so is my PCP and the Neuro. SO I booked myself another appointment with the same neuro (I should mention he runs the ALS clinic in my town and is generally well regarded by all the people I work with at the hospital, which does bring me some peace of mind.) I explained to him my fears and I told him a bit more about my symptoms.. at the first visit there were a bunch of med students in the room, and one of the med students did a physical examination of his own in addition to the doctor's. Anyhow, second visit was just me and him and my girlfriend. I told him about my muscles shaking when I use them, how when I type all day at work my fingers are completely exhausted and shake from even mild use. My tremoring all over my body, etc.. etc.. he could see the fear in my eyes and said we could schedule a NCS/EMG which is exactly what I wanted. He said we could do the whole right side of my body. He also said that after all this comes back normal I need to get my anxiety under control.

So, next visit do the NCS/EMG and everything came back as normal as it could be. I was skeptical about the EMG though.. he tested about 8-10 different muscles, but he only took a TOTAL of about 5 minutes to do this. Not 5 minutes per muscle, 5 minutes period. The NCS with Rep Stim took about 2 hours. Anyway, I wasn't skeptical at first and was actually quite relieved and felt a lot better mentally. I had a great couple of weeks then I mentioned the EMG I had done, yada yada and how long it took in a group I'm a part of for BFS. Apparently EMGs generally take much longer and one muscle alone can take 10-20 minutes. So, I was a bit disheartened. In an effort to make myself feel better and following the advice of several people with BFS and my PCP I decided I would start back weight lifting again and to kinda take it easy and make sure my body has a chance to get used to it. So, a week ago I gave it a go. I did some upper body work and a bit of lower body stuff (won't go into specifics). I was completely drained afterwards but was happy, cause I could do it. Next day my fasciculations were all over the place and wild and in spots I had never had them before, and they haven't stopped. My arms twitch constantly now, when they hadn't before it would just be sporadic. Neck.. back, my forearms twitched so hard my fingers shut on me. Day after that my left ankle (one of the first spots I noticed fasciculations and cramping) would cramp up and get stuck at the slightest bit of inward rotation.. if that makes sense. Now, my throat is twitching and my right eyeball is twitching like crazy.. almost stuck shut a couple times. Needless to say this has me in another downward spiral. I can see all of my symptoms getting worse, and when they get worse with exercise it really scares me. I still try to take solace in the fact that the neuro and the PCP both still think I'm fine and that, even though the EMG was very short and basically done to shut me up, that it still didn't show anything weird.

My tremors are much worse as well, this combined with a very strong gag reflex (new within the past two weeks) and the constant throat twitching has made me make another appointment with my PCP. I'm going to ask for a referral to a different Neuro and see what I can do from there. I realize my HA makes none of this better, and I know that it's very possible I'm doing this to myself. My girlfriend is a Psychologist/Social worker and has done a lot of breathing work and stuff with me and made me promise to get an appointment with a cognitive behavioral therapist in addition to the PCP visit for a neuro referral. Despite this, she also agrees that I should get a second opinion, especially after the exacerabation of all of my symptoms after exercise and when she saw me gag twice, for literally no reason, while walking to get lunch with her the other day. The one thing that actually makes me feel a little better about this thing though is that today I had a followup ultrasound today on a thyroid cyst I had (it was drained during biopsy a few years back, so it should have been very small) but the ultrasound tech told me the largest measurement of it this time was 1.6CM, which is about .5CM larger than it was when they did the biopsy. I figure that, the gagging and strange throat feelings I've had here lately can be attributed to that. The spreading and worsening fasciculations (am I spelling that right? This place doesn't seem to think so.. anyway) after moderately strenuous exercise are still giving me some concern. BUT! I'm managing my anxiety well, the breathing exercises really do help to slow the rate of the twitching (but it still occurs everywhere) and I've started on a lowish dose of Buspar, which seems to be helping my anxiety a bit. And, as an update to the title of this post I'm not "very scared" anymore. I'm only somewhat scared, regardless of the outcome it's gonna be what it is. I enjoy my girlfriend day to day and try to keep my mind occupied. Which is what I would suggest ANYONE in this section of this forum should do.

Thanks everyone for taking the time to read and for any reassurances I'm most likely to get from you wonderful people. I'll post another update with what the PCP says and with what I hear from any future visits to any other doctors.

 

[Nikki J]

There is no way one muscle should take 10 minutes to emg. If someone really experienced that they had a trainee but even then I doubt it. I can tell you that it took about 5 seconds after the emg inserted a needle for her to start calling out abnormalities ( she was dictating results) when mine was abnormal. I have also had a research doctor do a full body emg in under 30 minutes

twitching after exercise is not uncommon

 

[Jeffkwv]

I also wanted to add.. For anyone reading this who is scared of possibly having ALS. When I said that he said "if it were 6 months it would be a different story" I mean that, he would have taken this far more seriously, and probably wouldn't have been so light hearted and jovial, and probably would have scheduled my EMG/NCS right then and there. So please, don't freak out if you read that. His attitude would have been different. He wasn't as thorough with his exam and didn't see a need for any further testing because my symptom length and my normal strength and reflexes basically said he didn't see a need for invasive testing.

Me insisting is what caused him to do the testing.

And thank you for clarifying the EMG results. That was definitely causing me some anxiety.

 

[lgelb]

Have you had your thyroid levels checked recently, given the size of the cyst? Fluctuating or abnormal levels can cause the issues you describe. I can see why you're scared but this doesn't sound like ALS at all. I would also ask about electrolyte and metabolic panels.

Instead of using the PCP as a conduit for a second neuro, I would be exploring systemic explanations.