Fibromyalgia/ALS/something else?

[Epocka]

I am a 32 year old male. Issues began 6 months ago. Started as stiffness on one side of the body that quickly spread to the other side. During the first several months, the stiffness was much worse during the morning and resolved as the day went. My limbs were falling asleep much easier during that period as well, including a sensation of reinnervation and tingling after it resolved - just like a healthy person would experience, but during that time, that would happen much more frequently.

During the first three months or so, I had insane bowel problems - diarrhea, constipation. That has gone away. I also had visual disturbances, tinnitus in one ear. Also gone now.

About four months in, I started having breathing and swallowing problems (such as liquid going up my nose or solid stuck in my throat) - those are intermittent, so I believe that is a good sign in favor of it not being ALS.

Muscle fasciculations are present randomly all over my body, mostly random but notably under my right eye, which has been bothering me persistently for about a month now.

- There have been increasingly more muscles that are involved in stiffening that causes me pain when I use that part of the body.
For example, in my right shoulder/right side of neck. No pain when I am in normal position, but turning my head either right or left causes me muscular/tendon pain in the affected place.

More and more muscles keep adding to the pool of muscles affected like this. The pattern is generally:

- The muscle becomes very noticeably stiff
- I start feeling sensations such as burning, or prickling
- The muscle gets added to the pool of affected muscles causing me pain

In some cases this is bilateral, for example it was like that in the case of the ulnar areas of my both hands, my lower torso, or most recently - my tongue. I feel a burning sensation on both sides of it.

Now these are not intermittent - once a muscle gets affected by this process, it is problematic forever. I can sometimes get it to not hurt by moving that portion of the body a lot over the day but that same pain eventually comes back in that same particular place.

I have not observed weakness or muscle wasting.

Tests I have had done:
- Brain MRI (5 months ago, clean)
- Blood, Diabetes (negative)
- Blood, Thyroid (negative)
- Cervical spine MRI (2 months ago, shows protruding disks, but no myelopathy - my doctors were not concerned)
- Specific blood tests (ANA, RF, Vitamin B12, Vitamin E, Anti-ACHR, Ceruloplasmin, Lyme Disease, SOX1 antibodies, Paraneoplastic syndrome) - all negative

I have had an NCS which came back normal.

My neurologist claims a working diagnosis of functional neurological disorder and treats it with Trazodone (which after a month has not yet helped, things are getting worse), but says that he does not exclude the possibility of a rare neurological disease and that all we can do for now is wait and see how it develops. Last time he saw me was a month ago though, and since then things have progressed quite a bit.

I am patiently awaiting the next appointment, but in the meantime, can anybody share whether they had a similar experience? I am particularly concerned about ALS, however I did not have an onset of issues typical of ALS at all - I can't say I have weakness in the sense of being unable to do things. Rather, my muscles get tired very easily. Inability of performing certain movements is rather caused by the pain I described, but if I suppress the pain, I can perform the movement.

 

[johnsalmon]

I am particularly concerned about ALS, however I did not have an onset of issues typical of ALS at all - I can't say I have weakness in the sense of being unable to do things. Rather, my muscles get tired very easily. Inability of performing certain movements is rather caused by the pain I described, but if I suppress the pain, I can perform the movement.

similar but not exactly the same - food and drink down the wind pipe problem swallowing and voice changing some time has problems forming words - have the same pains as fibromyalgia in the arms neck and shoulder and legs not in the joints but the muscle- so far all blood tests ok catscan ok but having more detailed blood tests as requested rheumatologist and a more detailed mri by neurologist I like you are concerned of ALS however ALS is a rare disease as are most in MND classification and syndromes that point to mND also point to a lot of other less rare conditions and this is why it is so hard to diagnose MND's can come on fast or come on slow Stephen Hawking is a good example .

when the doctors have trouble diagnosing our condition we tend to self diagnose and diagnose with the worst diseases we can think off ( this is human nature) and with google it is even more easier to diagnose the problem!!??

The trick is to work with your doctors if you are worried about MND's then tell the doctor and allow him to explain why it is not or why it may be

 

[BlueBells]

Hello @Epocka

Welcome to the forums.

It shouldn't be long before someone with a bit more helpful suggestions will pop along.

Meantime, have you done the free test on here? It might be well worth it, it was an eyeopener for me.

@sunkacola has something somewhere on here he directs people to, so if I can locate that, I'll put it in this thread for you, if he doesn't beat me to it.

It's a friendly group here, so do come back

 

[sunkacola]

@sunkacola has something somewhere on here he directs people to, so if I can locate that, I'll put it in this thread for you, if he doesn't beat me to it.

Here it is: My advice for managing fibromyalgia (especially for newcomers)

Hello, @Epocka , and welcome to the forum. You give a lot of good information in your post, but I don't see any questions, which is why I did not reply. I am not sure what you are looking for. If you do have questions, or would like advice or suggestions, feel free to ask.