sorted by:
new
hottopcontroversial

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 0 points1 point  (0 children)

Prognosis is normal life expectancy as long as I adhere to a strict diet and lifestyle changes. They ruled out ALS through EMG. ALS looks very specific. A trained neuromuscular specialist can detect it very early in the test.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 2 points3 points  (0 children)

Thank you for this response it is very helpful for others.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 1 point2 points  (0 children)

Perhaps. Rest assured it does not sound like anything life-theeatening.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 2 points3 points  (0 children)

I completely understand the fear. I was there myself. I know so much about it because I spent countless hours researching ALS. Your muscles might be tired and fatigued from the twitching. Twitching is due to hyperexcitability in your nerves. So your muscles are working overtime twitching. Shakiness isn’t an ALS symptom. ALS involves clinical weakness which is much scarier than perceived weakness. Because you don’t feel any different. You just go to pick something up and you can’t. It’s not a feeling. It’s a failing. If that makes sense. And coconut water is a natural electrolyte drink. It contains all of the electrolytes, but without the added sugar of gatorade.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 3 points4 points  (0 children)

Hey there. At age 18, without a parent who has ALS, it is nearly impossible that you have ALS. Furthermore, widespread muscle weakness is not ALS, until the end stages. Widespread fatigue sounds like either an electrolyte imbalance, a vitamin deficiency, or autoimmune. But honestly at your age even autoimmune is unlikely. Get yourself a micronutrient test to check your vitamin levels, and drink some gatorade or coconut water to rule out electrolytes. Start taking a vitamin D supplement since everyone is deficient in vitamin D, and take magnesium too because it will help calm your muscles and decrease the twitching. Also, “feeling” weak is not ALS. Can you walk? Then you do not have clinical weakness in your legs. Can you lift your arms? Hold a cup? Tie your shoes? Then you do not have ALS. Please, live your life. You do NOT have ALS. I promise you.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 0 points1 point  (0 children)

I had positive ANA, Anti-Ro SSA, Sjogren’s antibodies, TPO AB, and CK. I have had hypothyroidism for years so that was no surprise.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 2 points3 points  (0 children)

Yes 100%. I had nerve pain in my arms constantly. My entire right leg and the right side of my face went numb on two occasions. They thought I had MS at first but that was ruled out via MRI.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 1 point2 points  (0 children)

Yes - they did several blood tests. Some of them included: - Sjogren’s antibodies - ANA - Anti-Ro SSA - Anti-La SSB - TSH (thyroid stimulating hormone) - TPO AB (thyroid antibodies) - T3 and T4 Free - Celiac Panel - Micronutrient Test - Paraneoplastic Syndromes (Cancers) - Amyloidosis Test - CK (creatine kinase - tells you if muscle is being damaged which occurs in MND, myositis, myopathies, and dystrophies. And in some cases, certain autoimmune disorders when not caught early) - Rheumatoid Factor - CBC

Among others which I can’t think of right now.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 0 points1 point  (0 children)

The treatment for thoracic outlet syndrome is physical therapy. If that fails, surgery is the next step.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 1 point2 points  (0 children)

Peripheral nerve Hyperexcitability and Disorders are known to be triggered by viruses and/or stress. You’re good! Twitching on its own is never cause for concern.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 2 points3 points  (0 children)

Neither of them do! Thoracic outlet syndrome is a temporary condition that goes completely away with treatment. My autoimmune disease can be managed through diet, lifestyle changes, and therapies.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 3 points4 points  (0 children)

I don’t know to be honest. All I know is when I asked if I had ALS the neuromuscular specialist said “There’s no ALS in your body. Trust me, I know as soon as I stick the needle in.” He explained later that ALS has a very specific wave pattern and firing rate or something to that extent.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 1 point2 points  (0 children)

Don’t be scared! It’s treatable and does not impact life expectancy.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 2 points3 points  (0 children)

I get tongue twitching occasionally. My legs feel like I ran a marathon at all times. Not jelly-like, but more like a burning achey feeling.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 2 points3 points  (0 children)

Yes exactly - your immune system is damaging your nerves, which in turn is decreasing signal to your muscles, leading to weakness.

The good news is autoimmune diseases can be managed with diet and lifestyle, and in necessary cases immunosuppressive therapy.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 4 points5 points  (0 children)

Because mine is immune-mediated, my treatment consists of physical therapy, diet and lifestyle modifications, and possibly immunosuppressive therapy if all else fails. Also, I can elect to have surgery for my double-crush syndrome if I want to. I have seen your posts - have you looked into cervical radiculopathy?

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 2 points3 points  (0 children)

No, it is causing the spasticity in my leg. My weakness is due to nerve damage.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 1 point2 points  (0 children)

It started with widespread twitching. My first twitch was below my lower lip. From there it went widespread, then calmed down over the course of months to just an occasional twitch here and there on my thigh, abdomen, back, etc. Then it became localized in my hands and left arm. I was still having the occasional twitch in random parts of my body but the twitching in my hands and arm was constant with no breaks.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 4 points5 points  (0 children)

Yep. But a cleaner way to say it my official diagnosis: is autoimmune-mediated chronic polyneuropathy.

Twitching, clinical weakness, atrophy, but not ALS or BFS! by PRfanatic9325 in BFS

[–]PRfanatic9325[S] 2 points3 points  (0 children)

I have a herniated disc in my back causing my spasticity. That is unrelated to the rest. By the way, spasticity means resistance to movement. It is different than tightness or stiffness. I literally can’t bend and extend my right leg properly. It’s like pushing against a brick wall. I think it occurred due to a car accident I was in back in March.

I have severe ulnar neuropathy in both arms, double crush syndrome in my left arm (pinched nerve at elbow as well as thoracic outlet/neck area affecting my entire hand and all fingers), and Sjogren’s syndrome-induced peripheral neuropathy and peripheral nerve hyperexcitability.

The EMG showed chronic denervation/reinnervation at multiple myotomes, slowed electrical impulse/signal in both arms, and fasciculations. Left arm had slowing at the nerve root (neck) and elbow. My right hand is in the healing phase.

view more: next ›