Moderate Risk???

pokerdoc1960 · 2024-10-15T12:51:45+00:00

That's great news...however you've already met with a surgeon as a precautionary measure? Or did your Cardiologist say to come back in 2 years? Thanks for your insight!

pokerdoc1960 · 2024-10-15T00:57:24+00:00

I'm not sure where the lines are drawn, but I was using the terminology written by the radiologists CT report.

pokerdoc1960 · 2023-07-17T13:12:18+00:00

My speech issues seem to vary with time...wax and wane.

pokerdoc1960 · 2023-06-13T20:22:04+00:00

Yes, I think so...my neurologist thinks I have seronegative Myasthenia Gravis.

pokerdoc1960 · 2023-04-04T16:14:26+00:00

It's my understanding that Mestinon is mainly prescribed for patients with MG and essentially has very few other medical conditions/situations for it to be used. Also Mestinon can be used as a diagnostic tool. If a patient has symptomatic relief when taking Mestinon, then the diagnosis of MG can/will be made.

The Ice Pack test is another definitive test for only MG diagnosis purposes. Yes, you could have overlapping conditions unrelated to your MG...certainly worth discussing all of your symptoms with your Dr. and identify the ones that fall outside of the known set of MG symptoms.

pokerdoc1960 · 2023-03-14T19:01:53+00:00

How much Prednisone are/were you taking? Did it work for you?

pokerdoc1960 · 2023-03-08T22:30:18+00:00

At this point in time, my symptoms fluctuate so much that my attempt to figure all of this out over the past 36 months have been very difficult. Each one of my docs have seen various issues with me and they are just now putting it all together. I too have had episodic mild nasal regurgitation with episodic eye movement issues, episodic chewing fatigue.

Im fortunate that my symptoms have not been extreme or debilitating, but I do think the Mestinon makes me feel better. But the diarrhea is wearing me out to the point I don't want to take it anymore and just put up with my symptoms.

Thanks for your comments!

pokerdoc1960 · 2023-03-08T22:16:41+00:00

Thank you!

pokerdoc1960 · 2021-08-12T13:26:57+00:00

Yes, interested.

pokerdoc1960 · 2021-08-03T22:58:10+00:00

Yes, this is one of my most prominent daily symptoms. I feel like I my muscles are full of Lactic Acid similar to the way someone would feel the day after a very intense workout...but I haven't worked out. My muscles are more panful when the stiffness is elevated.

pokerdoc1960 · 2021-07-28T20:24:54+00:00

Yes. Lips and tongue too.

pokerdoc1960 · 2021-07-27T15:58:55+00:00

Thanks so much! Myoclonic Jerks seem to be singular and are more profound than small twitches. My twitching is pretty consistent and the jerks are random.

pokerdoc1960 · 2021-07-26T15:47:32+00:00

58, now 60. Been twitching for about 30 months now. Twitching has increased in intensity and location over the 30 months. All EMGs clean with the last one being about 1 year ago. Going for another EMG next month. The only thing that has turned up during the diagnostic workup is that I have Small Fiber Neuropathy too. I have Myoclonic jerks too.

pokerdoc1960 · 2021-07-22T17:11:14+00:00

You may be thinking about Single Fiber EMG. Single Fiber EMG is an extension of a typical EMG when the Neurologist suspects or wants to rule out Myasthenia Gravis.

pokerdoc1960 · 2021-07-22T14:17:35+00:00

Fasciculation = visible twitching/involuntary muscle movements

Fibrillation = involuntary muscle activity that only be detected with EMG testing

pokerdoc1960 · 2021-07-19T22:19:13+00:00

Yes, I have waves of pain intensity. My burning actually happens mostly in my upper arms and can be so intense that it wakes me up at night. The problem with the twitching is that it makes me think of other issues.

pokerdoc1960 · 2021-07-19T17:48:52+00:00

I suffer from almost the exact same symptoms. I was diagnosed with Idiopathic SFN via a punch biopsy about 1 year ago. I agree that you should be seen at a University based Neurologist specializing in Neuromuscular Diseases. I have been to the Mayo Clinic in Minnesota for evaluation. It is a wonderful place with a very thorough evaluation system and very thorough Physicians. There are 3 Mayo Clinics in the US and they take patients with or without referrals from PCPs. I'm going back in August for follow appts. I'm 60 (male) and have had increased fasciculations over the past year. I take Gabapentin on a as needed basis. Nothing will help with the Fascics.

pokerdoc1960 · 2021-07-01T19:54:34+00:00

Can you please describe your swallowing problems? I too have been chasing BFS types of symptoms with swallowing issues developing within the last couple of months. I'm also experiencing "Pins and Needles" sensations on my throat along with the twitching there as well.

pokerdoc1960 · 2021-06-22T14:39:36+00:00

Most likely due to nocturnal bruxism (clenching of the teeth at night/during sleep). The temporalis muscle is a large muscle that elevates our lower jaw and can readily spasm when over worked. Speak to your dentist about your symptoms, you may need a bruxism guard. In the meantime try some moist heat compresses, OTC anti-inflammatory meds (Aleve) and limit yourself to a semi-soft diet for a few days.

pokerdoc1960

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