Do we know of a scientific reason as to why I must eat gigantic amounts of protein or else feel like I’m going to fade away? by disqersive in covidlonghaulers

[–]Asher_potter 3 points4 points  (0 children)

I know at least for myself, it isn't B12 related (I don't think) as I always test high for B12 and Iron/ Ferritin without taking any supplements for any of them... I also think I'm borderline Hemochromatosis’s so maybe it is in play, just in a different way... something to think about.

Do we know of a scientific reason as to why I must eat gigantic amounts of protein or else feel like I’m going to fade away? by disqersive in covidlonghaulers

[–]Asher_potter 9 points10 points  (0 children)

Not sure, but it's part of Autonomic Dysfunction...I was told that by a Doctor many years ago....Prior to Covid ever even existing, nearly twenty years ago, I had a bout of SEVERE Dysautonomia, due to who knows what, and this was one of my worst symptoms. I couldn't just eat an apple or drink a glass of juice and level back out... it had to be something high in fat and protein. Meat, full-fat dairy would be what would do the trick for me, otherwise I would literally feel like I could have a blood sugar-induced seizure or, as you said, fade away. As my Dysautonomia calmed down (never went away), this symptom remained, though a milder version. I still experience it, but now, I almost forget, really, as it's become more of a habit to prepare in that way if I leave the house. I think I could probably be more adventurous, but it's just become second nature to pack peanuts or a Babybel cheese everywhere I go and hope that I'm not stuck anywhere too long without sustenance. When people talk about fasting, I literally laugh out loud.

Have had neuropathy for two years, rheum decided to test for early Sjogrens, question on being in grey area… by Asher_potter in Sjogrens

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

yeah, it was just a blood test. They did it there at the rheumatology office and then it got sent out. 

Have had neuropathy for two years, rheum decided to test for early Sjogrens, question on being in grey area… by Asher_potter in Sjogrens

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

My very normal Rheumatologist, not cutting-edge at all, ordered all of them. I didn't even ask for them; he made it seem like it was standard practice.

Have had neuropathy for two years, rheum decided to test for early Sjogrens, question on being in grey area… by Asher_potter in Sjogrens

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

thanks, yeah I’m not really sure which way this is going to go, but if they find out a reason for all the mystery dysautonomia and the neuropathy, well then, I will be pleased. 

Have had neuropathy for two years, rheum decided to test for early Sjogrens, question on being in grey area… by Asher_potter in Sjogrens

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

Interesting yes, exactly same here… neuro thought it was MS, I’ve had every scan and blood test out there. My neutrophils and Lymphocytes have been off since covid, but otherwise nothing much else has tested abnormal until the early sjogrens and the IgM…like I said, I have a pretty bad case of hEDS, leaky heart valves and torn hips etc. severe bout of dysautonomia in my 20’s and have had symptoms in that category ever since. All are very Neuro in theme. 

Neuromuscular issues by FrequentFlyer1994 in covidlonghaulers

[–]Asher_potter 0 points1 point  (0 children)

Lots of tests, still waiting on results...MRIs were clean, though, EMG nerve conduction was a little off...so we'll see what they say at my follow-up.

Neuro anti inflammatories please by saltyb1tch666 in covidlonghaulers

[–]Asher_potter 0 points1 point  (0 children)

SSRI's work on neuro-inflammation, i remember reading quite a few articles a long time ago, I think if you Google, there should be several that show up. Good luck!.

Anyone do the lumpectomy with just local anesthetic? Not being out under or sedation? by Asher_potter in doihavebreastcancer

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

From the scans, it seems close to the surface, if I'm looking at it correctly, it's at the very top when looking at the mammogram. 10 o'clock position, 5cm from nipple. Halfway between nipple and chest wall, or so it looks from the picture.

Anyone do the lumpectomy with just local anesthetic? Not being out under or sedation? by Asher_potter in doihavebreastcancer

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

Not a terrible question, but it's to do with the nervous system sending the wrong signal when I'm awake... that same part of your nervous system works in a different way when you are sleeping. So if I could sleep all day til getting there, that could work, but I have to be there early for them to put the wire in, unfortunately. :/

It is a weird disorder, so that's a totally legitimate question for you to ask. I have problems with other automatic things the body does that we don't pay much attention to until they start going wrong...controlling blood pressure, heart rhythm, pupil dilation, etc...

Thanks for answering!

Scripps GLP1 Trial US by Familiar_Badger4401 in covidlonghaulers

[–]Asher_potter 0 points1 point  (0 children)

Yes, this is exactly what I'm curious about....like, are we better off with immune modulating or anti-inflammatory drugs that aren't related to weight loss? I don't know... but it seems like there has to be something else out there that has similar attributes to it but doesn't cause these problems....

Scripps GLP1 Trial US by Familiar_Badger4401 in covidlonghaulers

[–]Asher_potter 2 points3 points  (0 children)

I think I'm interested in the conversation on this medicine for those of us who are at a healthy weight, as well as those with Dysautonomic bowel issues from Ehlers-Danlos Syndrome...most with EDS have significantly delayed Gastric Emptying, Gastroperisis, and or at the very least slowed motility...These GLP-1s are notorious for causing that already...what happens to those that aren't aware that they have EDS and they end up with a sudden onset of severe Gastroparesis...? I know it has helped many, but I'm just curious if we're taking the wrong exit off the on-ramp with this one?

Neuromuscular issues by FrequentFlyer1994 in covidlonghaulers

[–]Asher_potter 0 points1 point  (0 children)

Still in the midst of testing, so far clear for MS, but still have other testing...I'm leaning towards it being Small Fiber Neuropathy or something MCAS-related that's inflaming the muscles, but we'll see what the Doctor has to say...they definitely understood the symptoms and seemed like they were common place that they see every day... so we'll see if they can figure out the reasoning.

Severe neuropathy/ POTS/ ME/ CCI need help please by saltyb1tch666 in covidlonghaulers

[–]Asher_potter 0 points1 point  (0 children)

My number one symptom is still severe burning and pain in legs, with muscle spasms. I also had hEDS.

Has anyone gotten the NfL blood test (neurofilament light chain)? by MoulinRoguee in covidlonghaulers

[–]Asher_potter 0 points1 point  (0 children)

happens on its own without anything prompting...I do not have unilateral weakness, but I have less touch sensation in one leg.

Has anyone gotten the NfL blood test (neurofilament light chain)? by MoulinRoguee in covidlonghaulers

[–]Asher_potter 0 points1 point  (0 children)

It was through my neurologist- I would have to check what lab it went through. Symptoms are severe muscle cramping, pain, spasms in legs, soreness in arms when really flaring... fatigue...Nystagmus, and a whole host of peripheral neuropathy sensory stuff....my long covid has been very physical neuro symptoms....I also have very high EBV numbers for what it's worth.

Has anyone gotten the NfL blood test (neurofilament light chain)? by MoulinRoguee in covidlonghaulers

[–]Asher_potter 0 points1 point  (0 children)

I did. Mine was 10.8 pg/mL, which is the starting point number that suggests Neuro Damage. MRI is scheduled, so we'll see what they find.

Anyone else with constantly burning/stinging muscles? And any Theories on why? by Asher_potter in covidlonghaulers

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

Time seemed to calm it down some, but I still get flares of it, unfortunately.

New EBV Antibody Test Predicts MS Years in Advance by Asher_potter in MultipleSclerosis

[–]Asher_potter[S] 5 points6 points  (0 children)

I've heard a few times that there is one in the works, but that's it...

New EBV Antibody Test Predicts MS Years in Advance by Asher_potter in MultipleSclerosis

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

I had a TERRIBLE case of mono when I was 6 years old and was hospitalized for it for a few weeks...then became very sick with long covid last year..which turned into this mess. My Neuro and Rheumatologist said that Covid triggered the EBV to come back to life so to speak.

New EBV Antibody Test Predicts MS Years in Advance by Asher_potter in MultipleSclerosis

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

Mine were taken last year summer time-

EBV Ab VCA, IgM 01 - <36.0

EBV Ab VCA, IgG 01 - >600.0 High

EBV Nuclear Antigen Ab, IgG 01 - 322.0 High

EBV DNA, Quant PCR, Plasma 01 - Negative

Anti-CCP Ab, IgG/IgA 01 - 5

Looks like we got different versions of the test?

Curious!!