u/rgk1012

Hi everyone, so sorry for the length!! This group has been very helpful as I am navigating a diagnosis! I posted a few weeks ago asking for tips to advocate for myself at my next PCP appointment after normal AChR & MuSK labs and got so many helpful replies!

I am having a somewhat unique issue of not being able to access a neurologist or neuromuscular specialist (they absolutely will not accept any referrals without a clear existing diagnosis)

After I made that post I saw someone in this group post pictures of their ptosis and I came to the realization that what I thought was just normal wonky eyes for me was ptosis lmao! I documented the change from morning to evening in some pics to show my PCP. I had my appointment yesterday, and I went prepared to ask her about the following thanks to everyone’s help!

1. Trial of Mestinon
2. LRP4 testing
3. Cell based assay- AChR & MuSK
4. Ice pack test 
5. Chest CT

***SFEMG/RNS are not available in my city, and I cannot travel the 5+hrs for those tests unfortunately

She did not feel comfortable prescribing Mestinon as she knows nothing about it, and has not prescribed it in her almost 30 years as an MD. She was unable to order the more sensitive cell based assay labs for AChR & MuSK, but was able to order LRP4! 

She looked at my ptosis photos and agreed that it was ptosis and put in an urgent referral to an eye clinic for the Ice pack test! She said she thinks if the Ice pack test is positive she can get the chest CT covered and then take the positive results from the ice pack test and whatever the results are from the CT & LRP4 to push the referral to my local Physiatry and Neuromuscular center. She said if they deny the referral they will sometimes give her ideas about next steps, like how to prescribe a trial of Mestinon for example. I am really hoping that it does not come to fighting a denied referral!

After she confirmed the ptosis at my appointment yesterday, I decided to try the Ice pack test at home last night. I know this is not a substitute for an in clinic test, but I was interested in others' opinions while I wait for the referral to the eye clinic. I am very much hoping that an in clinic positive will help get me diagnosed! It’s been a long 8 months of having my life turned upside down from my symptoms, and I'd be lying if I said I wasn’t desperate for some answers!

Thank you in advance for reading and taking the time to share your thoughts! It really makes a difference(:

Hi all, I am currently on the journey towards a diagnosis. Whether that will be MG or not is yet to be determined!

I recently got my lab work back and all was normal! I am unable to see a Neurologist without a prior clearly diagnosed neurological condition, so my PCP and I are winging things and I am just hoping for any advice or tidbits of helpful info you all may have for me so I can best advocate for myself in this process. I apologize for the length and I thank you for taking the time to read!!

Since November of last year I have been struggling with an onset of multiple different symptoms but for the sake of length I will only mention the ones I believe may be MG related. I first noticed weakness in my hands and arms that was completely unusual for me, and over a few weeks started to interfere with my life to a point that I could no longer ignore it. My arms feel especially weak and it's sort of difficult to describe but they feel very heavy and the whole arm burns like I just did the most rigorous workout imaginable. I often want to rest all or the weight of my arms on something to attempt any relief. It is much, much worse with exertion but sometimes they feel that way at rest just holding my phone up. It is easier to hold things closer to my body, but lifting anything away from me or above me is a no go. I am an avid birder and would use my binoculars for hours every day and now I can barely hold them up for a few seconds. I can no longer lift pots while cooking, hold my arms up to wash my hair, etc. Things that I have always done with zero issues.

I have constant blurry/foggy vision, a recent sudden onset of occasional double vision which has never occurred before in my life, and eye pain. I had a completely normal eye exam a couple months ago, and have never worn glasses. I have been diagnosed with chronic fatigue for 8 years, but around the time the onset of weakness occurred It became worse than I ever thought possible. It's an indescribable exhaustion.

I have had quite an extensive amount of labs and other tests to rule things out since my symptoms began in November. In addition to these labs for AChR and MuSK I had an EMG and NCV of my right arm and both were normal, though I do know that they don't hold much weight in regards to MG. I also have a brain MRI with and without contrast to rule out MS scheduled in a few weeks to help further add to the growing data pile.

From what I have researched I should be considering talking to my doctor about the following.

LRP4 testing

Cell-based assay testing

Repetitive nerve stimulation (RNS)

Single-fiber electromyography (SFEMG)

Chest CT to evaluate for thymoma

Trial of medications

Anything else to add?

Hi everyone, I was hoping this community could be of help. I'm not sure whether this order will also test for the MuSK antibodies along with AChR. Google is telling me different things about the meaning of 'reflex'

I had these labs done 3 weeks ago, and I am driving myself a bit crazy waiting for the results to come in 😅 really hoping this one will test multiple antibodies and I wont have to have more labs done

Keeping those babies nice and snug!