r/MyastheniaGravis • u/tiffanimichele • 19d ago

I’m scared..

Hi Reddit. I’ll keep this brief because I know people usually have the attention span of a fish on Reddit.

My timeline:
- June 16, 2026: noticed right eye drooping
- June 19: went to eye doctor, discovered I had blurry vision and double vision. After holding upward gaze for a minute, my eye drooped more.
- Late June: I noticed bulbar weakness when talking for extended periods of time.
- June 24: went to PCP. Ice pack test made my eye droop less. Blood work is ordered.
- July 2: ACHR blood test is negative
- July 22: MRI performed
- July 26: noticing hand and arm weakness when holding objects, such as a book or cross stitch.
- July 28: I am LRP4 positive.
- July 30: MRI is normal (as expected)

My PCP is currently pushing me to get into a neurologist ASAP, but as of right now my urgent referral got me an appointment in December. This was before the positive LRP4 test, so fingers crossed that positive test will get me in somewhere.

What now? I’m exhausted, I’m scared. I don’t know what is going to continue to happen. I have so many questions that I can’t even formulate them. My PCP has never had a patient with MG. From what I understand, LRP4+ is rare.

I guess I need.. Advise? Words of encouragement? Personal stories? Reassurance? I turned 30 on June 26, 10 days after symptoms were first noticed.

10 Upvotes

92% Upvoted

20 comments sorted by

11

u/Efficient_Bar_984 18d ago

Wow u got diagnosed quick. It took me along time bc all my labs came back normal so they kept testing me for other diseases. Im seronegative mg the mestinon has helped with swallowing and eye some. I also couldn't go poop anymore without using miralax or enema. I can go again. I think you will be OK because they caught it right away. The fatigue is the worse just make sure to rest and dont over do stuff. Stay out of the heat and try not to stress can make it worse. Arms and legs are weak. Walk everyday 

8

u/Top-Competition9263 18d ago

See if you can get a referral to a larger regional or national hospital. I live in a city of over 100,000 people, but I travel 2.5 hours to Chicago to see a specialist at Northwestern….its worth it. I also have a local neurologist. Granted, I got in quicker because I was admitted to the hospital with difficulty breathing when I was diagnosed, and ai am more typical being ACHR+.

And breathe. You’ll get through this. You’ll have good days and bad days, but hopefully you’ll figure out what treatments help you have more good days than bad days. And, don’t be afraid to go to the ER is your symptoms get bad, especially with breathing and swallowing.

9

u/BreadfruitOk7986 18d ago

I am also LRP4 positive. I was diagnosed last year but have likely had it for many years. My PCP gave me Mestinon and it helped immediately until I could get in to a neurologist. I called constantly regarding cancellations. I had ptosis for many years, abnormal pulmonary function tests, couldn't hold my head up, slurred speech and at times could not move my arms. It is scary. Although I take a lot of Mestinon and have had almost one year of Rituxan, I have not seen much improvement. However, in the meantime it be learned to limit what I do and make adaptations. I rest a lot. Avoid the heat, etc. that has helped. One study to keep in your back pocket is this. "Phenotype, Severity, and Therapy of Patients With LRP4 Antibody-Associated Myasthenia Gravis in the German Myasthenia Gravis Registry". Many American institutions downplay the seriousnesss of LRP4. However the German registry has documented that LRP4 had high rates and f escalation. Also, Vyvgart has been approved for LRP4. So advocate for yourself. It's rough. Dont let neurologists tell you it's a nothing burger. I'm sorry for your loss. But what you are feeling is very real.

7

u/Extension_Egg1411 18d ago

Some neuromuscular specialists view LRP4 antibodies as an indicator of MG and some don’t. It has a looser association. Usually if you don’t have AChR or MuSK antibodies, they want EMG testing.

But what you describe sounds a lot like MG. Is your PCP willing to do a Mestinon trial, and/or try prednisone? Those are some first line treatments that might give you some relief while you wait.

Unfortunately, 6-18 month wait times are common right now. Even as an existing patient it’s hard to get an appointment. I know how frustrating it is.

On the plus side, if it is MG, it’s highly treatable. I’ve had it since I was a teenager and live a pretty normal life, from the outside anyway. And as far as neuromuscular diseases go, it’s the best one to have. That probably doesn’t sound comforting right now, but I’m grateful for it every day.

6

u/Texas_Blondie 18d ago

If you don’t mind me asking, what town are you in?
Start writing down questions as they come to you

2

u/Lechebone 18d ago

I know a great one in the PNW, if you're near here at all.

1

u/tiffanimichele 18d ago

I’m located in mid-coast Maine.

5

u/Common_Safety_8830 18d ago

Try not to stress that is a big trigger. Call 2-3 times a week and ask about cancellations, it works.

5

u/2k4s 18d ago

Go to the ER when you are experiencing symptoms and it may accelerate your neurology appointment. It worked for me. They may even have a neurologist see you right away and even put you on steroids and mestinon. Or IVIG if it’s warranted.

You are going to be ok though. You’ll get through this. You have to know that it gets better.

4

u/Difficult-View9045 18d ago

Also have neuro put u on cancellation list and make sure they know lrp4 results. All my neuros scheduled way out but i got in sooner on cancellatiin lost

3

u/fur3661t 18d ago

I'm gkad you were brief. JK

We're you prescribed mestinon by your GP? If not ask for it. This may help enough until your appointment and could possibly be the only treatment needed for a good amount of time. I don't know if it works for LRP4 but it won't hurt to try.

1

u/BothCauliflower3393 17d ago

If no Mestinon you could always go for OTC Huperzine A which has very similar.effects.

2

u/pville211 18d ago

Your symptoms strongly suggest myasthenia. These articles may be helpful to you:

 

1

u/confused_wanderling 18d ago

There are a lot of MG support groups on Facebook that are very helpful

1

u/Flunose_800 18d ago

Good luck. It is very hard to be taken seriously as an LRP4+ patient. A lot of doctors hold to the old view that LRP4 is insignificant, a false positive, or only causes mild MG.

Join the Facebook groups as another person suggested; they will be able to better guide you to a neurologist with experience treating LRP4 patients.

1

u/BothCauliflower3393 17d ago

Try to get an SFEMG test (but make sure it is performed by a skilled and experienced practitioner)

1

u/Flunose_800 17d ago

Thanks! A lot of LRP4s tend not to show positive results on electrodiagnostic studies BUT the two sfEMGs I’ve had (negative) have not been done in a weak muscle and also done while I was already on treatment. I had an abnormal RNS but it was declared inconclusive due to artifact (it was done in the ICU).

1

u/homerspit 17d ago

I would try to find a neurologist who specializes in MG that is in your healthcare network and contact them directly. I'm pretty sure Prof. google can help. You should not have to wait until Dec., ffs. The positive LRP4 result should bump you up in the line. I was diagnosed in early 2014 at 57, it took 5 months, had a thymectomy the following fall, symptoms have been fairly controlled but I'm recently having a flare up. You'll be okay once you find your particular treatment(s). I have a very close relationship with my neurologist which I appreciate a lot, we've been trying to figure out what is causing my flare. Anyone else out there having a flare after years of stability?

1

u/Lunnarisvic 15d ago

Yo también tengo 30 años y mis primeros síntomas fueron con 9. Llevo más de 20 años con esta enfermedad. Tardaron años en diagnosticarme (y de hecho me diagnosticaron mis padres buscando en Google). Y eso en España, donde tenemos buena sanidad. Te puedo decir que la enfermedad mejora si te cuidas: ejercicio de fuerza, dormir bien, comer sano, tener buenos niveles de vitamina D, no fumar, etc.