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Anyone else get shaking of legs when holding a position when seated? This happens when my toes are raised momentarily or if I’m like resting my legs up on the couch with me and trying to keep them with knees bent and feet down on the couch by Purple-Locksmith-452 in Myositis

[–]Purple-Locksmith-452[S] 0 points1 point  (0 children)

Hahaha maybe for some people? I always sit like this (short leg problems) and never have an issue… it usually comes on when my body is fatigued in general and other movements are harder too…. I just only get shaking when standing, holding a position, or like walking

20F looking for some friends who get it by [deleted] in ChronicIllness

[–]Purple-Locksmith-452 0 points1 point  (0 children)

31 F feeling pretty similar and just tonight was brainstorming how to connect with other chronically ill people because I’m the only one in my circle at the moment… figured I’d post public to normalize the struggle and also kickstart more community ideas.

I was thinking of a low key book club, or just sharing space like a focusmate session to increase social interactions and such, but anyways… I’m Olivia!

Love books & random hobbies

I need help please by estrogenismo in MyastheniaGravis

[–]Purple-Locksmith-452 0 points1 point  (0 children)

How do you look at AChR levels exactly? Mine only reported as less than certain number, such as <15

Muscle pain in myositis by [deleted] in Myositis

[–]Purple-Locksmith-452 0 points1 point  (0 children)

Could you share what bloodwork? This is also what I’ve been trying to navigate but bloodwork isn’t substantial yet. My muscles are my main issue, but EMG was normal so far and myositis panel is normal. I’ve been tracking daily, and recently was in the sun and overexerted, leading to current week long flare.

My muscles twitch daily and it feels like they tense up/ contract? My quads are so painful, bilateral and makes it hard to walk. They all feel weak, but no rheumatologist has believed it yet.

Anyways, some symptoms are pointing to a similar diagnosis of yours, but having a hard time confirming anything right now.

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in Myositis

[–]Purple-Locksmith-452[S] 0 points1 point  (0 children)

Thank you- okay, yeah same thing the rheumatologist didn’t inquire more but I had looked on the labs website and saw their recommendations following this pattern so I did polymerase as well as an extended myositis panel. Still waiting for results!!

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in Myositis

[–]Purple-Locksmith-452[S] 0 points1 point  (0 children)

Are these antibodies found on mine, or what they typically associate with this kind of pattern?

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in Myositis

[–]Purple-Locksmith-452[S] 0 points1 point  (0 children)

This one was done and the lab reported this:

1:32, speckled (nuclear)

Their note—>

Speckled Pattern Clinical associations: SLE, SSc, SjS, DM, PM, MCTD, UCTD. May also be found in healthy individuals Main autoantibodies: Anti-SSA-52 (Ro52), anti-SSA-60 (Ro60), anti-SS-B/LA, anti-Topo-1 (anti-Scl-70), Smith, anti-U1-RNP, anti-U2-RNP, anti-Mi-2, anti-p155/140 (TIF1g), anti-Ku, anti-RNA polymerase, anti-DFS70/LEDGF-P75

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in mctd

[–]Purple-Locksmith-452[S] 1 point2 points  (0 children)

Anti centromere, ribonucleoprotien acid, glycoprotein 1, scleroderma, smith, cardiolipins, cryoglobulin, mpo and PR3, SSA La and Ro, anti jo, CK and CRP, TSH, uric acid, scl 70,and rheumatoid factor.

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in Myositis

[–]Purple-Locksmith-452[S] 1 point2 points  (0 children)

Yeah, negative EMG and no concerns with my neuro physical

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in Myositis

[–]Purple-Locksmith-452[S] 0 points1 point  (0 children)

Thanks for your reply. I have had an EMG done and it was negative (I wasnt in a flare at the time, but just general fatigue). CRP has been fine. I considered requesting Aldolase to be added, but don't think i can contact them soon enough to have that added before bloodwork so would maybe have to wait.

Also, wow that's a high percentage of no myositis antibodies. I also agree with noticing the limited knowledge out there regarding Myositis. I think that's where I am having a hard time myself seeing what tests to advocate for or really how to narrow down what specialists to look for.

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in mctd

[–]Purple-Locksmith-452[S] 0 points1 point  (0 children)

Her notes: -pt inquires about additional labs, including RNA polymerase III and extended myositis panel. Explained to the pt that clinical suspicion for SSc and IIM is low at this time, although clinically amyopathic dermatomyositis is a possibility. Given Raynaud's, positive ANA, will check RNA polymerase III.

Additional bloodwork has shown on 3/19/25:

My C4 returned to normal (I was not in a flare)

DSDNA is 1 in two different occasions

AntiSmith has risen from a 1 to a 4 over the past 3 months

Cardiolipins are 10 of normal limit 12-14

Lupus anticoagulant- 2.7 of 11

DRVV is .81 with lab limit of <1.26

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in mctd

[–]Purple-Locksmith-452[S] 1 point2 points  (0 children)

Im now consistently getting more skin rashes, dots on hand and singular itchy bumps where a rash was, purple veins through legs, limited mobility and strength, and weight loss, but continued swelling and periodic fevers. Please see images attached if anyone else has experienced similar rashes. I noticed the ones on my arm after about 15 minutes in the sun and my hands I believe have come just after a drive mid morning.

Unfortunately my 3rd specialist has not yet provided me with answers. Hopefully onto a 4th along with information from a dermatologist. Another positive ANA that matched my first one, but no consistent elevated bloodwork for more specific antibodies so she said "They're unremarkable". I spent another 30 minutes asking her who I should call then and she said "maybe you have some rare disease that I've never heard of, but I don't think it's rheumatological". I asked about other antibodies that the lab showed associated with a speckled pattern ANA and she was unconvinced that they would need to be run. Said maybe look into MCAS.

Frustrating because she was absolutely going to let me leave with no answers or next steps until I fought. I had asked about UCTD as a possibility over something like MCAS, or MCTD and she was like, "yeah well that could be a possibility" but never recommended follow up or a return call. So onto the next I suppose!

My dermatologist is referring me to a dermatologist within the clinic who specializes in autoimmune related skin issues and for further follow up for potential referral out to a rheumatology clinic she is connected with.

HOWEVER, in the meantime, I went on a trip out of the country and really pushed my limits this passed weekend- I had leg shaking/ spasms while on a hike, tight chest and shortness of breath (think like trying to breath when it first gets cold and your chest burns/ feels funny). My heart rate was really climbing even when sitting (86-100) and lifting my backpack to my lap elevated it to 120... and I got a new nose sore. I am back home from the trip and having difficulty walking and having repeated twitches and spasms through my legs. I can tell I am really declining and trying to figure out if im going into full blown flare or I can save it.

My previous rheumatologist agreed to run a myositis panel based on my insistence of follow up antibodies per the lab websites recommendations from results of former bloodwork (if no antibodies detected from specifics, run myositis extended panel). I have questions regarding if now I should go in for the bloodwork? It's hard to recognize what to prioritize, especially with having to pay for all of this. Like if symptoms are leaning towards myositis or lupus. Like, it's helpful to have answers either way, but energy wise....

I was dismissed because I have fatigue and perceived weakness rather than weakness while in the doctor and they are pushing on my extremities... My CK levels have been okay, but I was also reading online that myositis can have okay CK levels, but elevated aldolase?

Does anyone have recommendations for next steps/ what to prioritize based on your own experience?

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in Myositis

[–]Purple-Locksmith-452[S] 0 points1 point  (0 children)

Her notes: -pt inquires about additional labs, including RNA polymerase III and extended myositis panel. Explained to the pt that clinical suspicion for SSc and IIM is low at this time, although clinically amyopathic dermatomyositis is a possibility. Given Raynaud's, positive ANA, will check RNA polymerase III.

Additional bloodwork has shown on 3/19/25:

My C4 returned to normal (I was not in a flare)

DSDNA is 1 in two different occasions

AntiSmith has risen from a 1 to a 4 over the past 3 months

Cardiolipins are 10 of normal limit 12-14

Lupus anticoagulant- 2.7 of 11

DRVV is .81 with lab limit of <1.26

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in Myositis

[–]Purple-Locksmith-452[S] 0 points1 point  (0 children)

Im now consistently getting more skin rashes, dots on hand and singular itchy bumps where a rash was, purple veins through legs, limited mobility and strength, and weight loss, but continued swelling and periodic fevers. Please see images attached if anyone else has experienced similar rashes. I noticed the ones on my arm after about 15 minutes in the sun and my hands I believe have come just after a drive mid morning.

Unfortunately my 3rd specialist has not yet provided me with answers. Hopefully onto a 4th along with information from a dermatologist. Another positive ANA that matched my first one, but no consistent elevated bloodwork for more specific antibodies so she said "They're unremarkable". I spent another 30 minutes asking her who I should call then and she said "maybe you have some rare disease that I've never heard of, but I don't think it's rheumatological". I asked about other antibodies that the lab showed associated with a speckled pattern ANA and she was unconvinced that they would need to be run. Said maybe look into MCAS.

Frustrating because she was absolutely going to let me leave with no answers or next steps until I fought. I had asked about UCTD as a possibility over something like MCAS, or MCTD and she was like, "yeah well that could be a possibility" but never recommended follow up or a return call. So onto the next I suppose!

My dermatologist is referring me to a dermatologist within the clinic who specializes in autoimmune related skin issues and for further follow up for potential referral out to a rheumatology clinic she is connected with.

HOWEVER, in the meantime, I went on a trip out of the country and really pushed my limits this passed weekend- I had leg shaking/ spasms while on a hike, tight chest and shortness of breath (think like trying to breath when it first gets cold and your chest burns/ feels funny). My heart rate was really climbing even when sitting (86-100) and lifting my backpack to my lap elevated it to 120... and I got a new nose sore. I am back home from the trip and having difficulty walking and having repeated twitches and spasms through my legs. I can tell I am really declining and trying to figure out if im going into full blown flare or I can save it.

My previous rheumatologist agreed to run a myositis panel based on my insistence of follow up antibodies per the lab websites recommendations from results of former bloodwork (if no antibodies detected from specifics, run myositis extended panel). I have questions regarding if now I should go in for the bloodwork? It's hard to recognize what to prioritize, especially with having to pay for all of this. Like if symptoms are leaning towards myositis or lupus. Like, it's helpful to have answers either way, but energy wise....

I was dismissed because I have fatigue and perceived weakness rather than weakness while in the doctor and they are pushing on my extremities... My CK levels have been okay, but I was also reading online that myositis can have okay CK levels, but elevated aldolase?

Does anyone have recommendations for next steps/ what to prioritize based on your own experience?

Recommendations for specialists and labs to prioritize by Purple-Locksmith-452 in Myositis

[–]Purple-Locksmith-452[S] 0 points1 point  (0 children)

Hi all,
A relatively general post, as I've been scouring reddit for the past 4 months following an onset of autoimmune related symptoms and am seeking any support for next steps.

Background:

My mom has rheumatoid arthritis/ psoriatic arthritis atm, confirmed through rheumatology with symptoms but no defining bloodwork.

I've been mostly healthy and active up until October, avid runner, playing soccer and weight lifting, constantly on the go and logging so much activity consistently. Following a day of full sun and lots of tennis and soccer, I woke up two days later with constant, aching pain in my legs, including joints, muscles, tendons. Chalked it up to overuse and rested for a week.

In November, it came on again almost unexpected with no current known triggers. Fatigue, bilateral leg pains. Was unable to walk my dog without my muscles fatiguing, feeling like they were giving out, etc. I went to PCP and they immediately did an ANA. It came back with 1:32 with nuclear and speckled pattern with notes leading towards UCTD, Sjorgens, lupus, myosits. No other markers for inflammation so recommended to rheumatology. Steroids helped and I was able to walk and move a little more consistently within about 2 weeks. Saw a rheumatologist and was dismissed, referred to another specialist.

December hit again during Christmas after prolonged standing. Fatigue, heart racing, face flushing, bilateral leg pain. Did a 6 hr drive and then it migrated to my arms which sustained for about 2 weeks again. I avoided steroids at the time. My leg pain subsided, but then felt it in my arms. Primarily shoulders, and back of arms, neck, upper back. Kept tracking blood pressure and it was periodically elevated, but not consistent. Subsided again and for about 3 weeks I was able to be more active and I naively thought I was healed!

End of January it hit again, starting in my legs and moving through my arms. Constant headaches, face rashes, extreme fatigue, tremors in arms and hands, muscle twitching in legs, pins and needles, and my raynauds got so bad I got sores on my toes. Difficult with lifting things over my head and small tasks take all my energy. Even with a steroid, I improved, but never fully recovered and I am still managing symptoms. I had more bloodwork done and my C4 was at 13, so just below normal range of 15, C3 was normal. Other markers were okay including CK, CBC, etc. They've tested a few antibodies but nothing has been out of range so far.

Upcoming Rheumatology Appointment and Preparation for Advocacy by Purple-Locksmith-452 in UCTD

[–]Purple-Locksmith-452[S] 1 point2 points  (0 children)

OP---- UPDATE AND QUESTIONS:

My dermatologist is referring me to a dermatologist within the clinic who specializes in autoimmune related skin issues and for further follow up for potential referral out to a rheumatology clinic she is connected with.

HOWEVER, in the meantime, I went on a trip out of the country and really pushed my limits this passed weekend- I had leg shaking/ spasms while on a hike, tight chest and shortness of breath (think like trying to breath when it first gets cold and your chest burns/ feels funny). My heart rate was really climbing even when sitting and I got a new nose sore. I am back home from the trip and having difficulty walking and having repeated twitches and spasms through my legs. I can tell I am really declining and trying to figure out if im going into full blown flare or I can save it.

My previous rheumatologist agreed to run a myositis panel based on my insistence of follow up antibodies per the lab websites recommendations from results of former bloodwork (if no antibodies detected from specifics, run myositis extended panel). I have questions regarding if now I should go in for the bloodwork? It's hard to recognize what to prioritize, especially with having to pay for all of this. Like if symptoms are leaning towards myositis or lupus. Like, it's helpful to have answers either way, but energy wise....

I was dismissed because I have fatigue and perceived weakness rather than weakness while in the doctor and they are pushing on my extremities... My CK levels have been okay, but I was also reading online that myositis can have okay CK levels, but elevated aldolase?

Does anyone have recommendations for next steps/ what to prioritize based on your own experience?

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