I'm not certain. I think for me it has waxed and waned throughout my adult life, and I just didn't know it. My symptoms are far worse with this exacerbation, making diagnosis easier, I am sure. This round has been more than 2 years.

My second neuro told me it would typically taper off, but I feel he is not correct. The statistics do not bear that out.

You may have worsening MG in which case you need to talk to your doctor about that as soon as you can. Keep in mind tho that heat worsens muscle weakness in MG greatly and can make youe overall condition worse. If I get into a hot tub I turn into a jelly fish..I just have no muscle tone at all. You truly need to extract yourself from the heat as it is exacerbating your symptoms no matter what else is going on.I have walked out to a car on a hot day and literally not been able to get back up the porch steps.

My caution is to get yourself in cooler circumstances. If you can borrow another AC or visit someone with one or get fans and wear a wet shirt and get water on your hair so you can get evaporation going...please do something to extract yourself from the heat. An icey drink at the same time helps too or being in a pool that is not hot.

I did fairly good in Phoenix last time I visited in August by always being in air conditioning and going straight into a van with AC for travel and staying hydrated.

You very well might have worsening symptoms but it is a good idea to extract the heat component so you don't have that influence coloring the mix. Some people wear cooling vests. I hope you can cool down soon. It really makes the weakness so much worse in most of us. Marie

Marie

The heat has a major influence on our symptoms. I live in Florida too, and the heat is cumulative-- I went outside for 10 mins this evening and barely got back inside and melted into a puddle. My MG came to a head last summer -- I couldn't talk, see and complete fatigue- that's when I found I had a thymoma. So yes, I do believe it builds, and can become exacerbated really quick. Time to check in with your neuro--please be careful!
Be well,

I hear symptoms taper with a thymectomy and treatment, but who knows. I am going to request a thymectomy if the SFEMG comes back positive while i have great insurance to cover all of the treatments and surgery. My neuro sent me up there in 08 for this, but they didn't feel my symptoms were too bad then. I don't want to wait until it's too late (crisis) before I have the surgery.

Just to add, I know it's not smart to not have AC in the car, but it's not going to be a cheap fix. It's leaking freon and won't stay recharged for more than a day. I work at a call center so it's cool at work and I just keep cold water in the car and drive with the windows down. For our doctor's appts that are hours away, we use our brand new Versa that DOES have AC :) .

Strizzlow, when is your SMFEMG? Or repeat test, I should probably say. Do I remember correctly that they are repeating a test they did previously? I've been thinking about you often, and keeping you in my prayers. I hope hour symptoms turn around quickly with the prednisone!

Perhaps I misunderstood my neuro, but he seemed to be telling me (in a roundabout way) that my progression over the next three years will tell me what's in store long-term. I have an appointment with him on the 29th and I will ask again. He also wants to start me on an immunosuppressant which has so far been avoided.

I was 3 years out from diagnosis and thymectomy (thymoma) when I had my crisis. I am worse now then in the beginning.

Don't you already have an MG diagnosis with positive AChR and EMG?

Thymectomy has helped many with symptoms but just like 1 immunosuppressant for all, thymectomy doesn't work for everyone. If my thymus was enlarged, I would definitely have the surgery. Thymoma can occur later with hyperplasia and it is also not always be seen with CT.

I am very heat intolerant. The South is not kind to those with MG. Last summer I went to Colorado for 2 months to escape the Texas heat and humidity. Sadly, this summer I am not very stable and need more frequent plasmapheresis so have to stay near my medical facility.

-sherry

Erica, I only took Prednisone for about 5 weeks at 10mg (last does was 4 weeks ago). i know that is too low but my doctor wants me to wait until I go to Mayo so it doesn't skew the results. I see Dr. Kennelly at the Mayo Clinic on August 20th. I also thought I was in the clear for years since my symptoms were mild, but now that I look back I could see there was some mild progression. For example, when I would do the dishes, I felt like I would drop the glass from my left hand. I shrugged it off. My right foot gets weak sometimes and I think it's because the foot I use to brake and push the gas when I drive. I've had that off and on since 2010 looking back through my medical records. Once I got the crazy wavy vision in April, we thought it was something outside of MG, but nothing is coming back. I hope the steroids work out but I have to be honest and say I haven't tried a significant dosage to see results. I also had shoulder surgery in the beginning of February and I think a combo of that, the meds, and college/work stress led to the eye issues and a possible relapse of MG, or atleast I hope it's the MG. That's the purpose for the SFEMG to see if it's generalized from the bulbar symptoms I started with.

Sherry, yes, per the blood test I have MG, but I didn't have a positive SFEMG in 08. As far as a thyoma, I only had one CT scan (in 08) and they didn't see one. I haven't had any additional imaging of the Thymus Gland which is something they may want to check for to see if it's changed. The hospital that I went to to have the CT scan is NOT very good from my experience and others that I know.

Would having the SMFEMG change their treatment plan at all? Mine tested eye muscles and hurt so much that I had tears continually rolling, though somehow I didn't flinch or cry out. If it were me, I would only have them do another SMFEMG if results would change the plan. I just don't want you to hurt unnecessarily! :(

It could take a long-long time for the thymectomy to relieve your symptoms. At least that is my understanding - and it may not even to anything. I made calls to get in to my doctor. Personally, I wouldn't wait until August 20th, I would get back to your doctor and see if you can start titrating up the Prednesone now slowly. It will take months for that to work too, so each day....

Also, I had to up my dose of Mestinon. Talk to your doctor about that too. I also bet the Mayo doctor might put you on Cellcept. It could take a year for that to work - and is a good alternative if the Prednesone doesn't work.

My Neuro also put me on IVIG to help relieve my symptoms quickly until the Prednisone kicks in (hopefully).

It got so bad - very quickly for me. I had trouble swallowing and could only eat a little bit in the mornings. I wish my doctors put me on Prednisone quicker.

My UCLA capped my Prednisone at 40mg per day (I would like to see 60, but maybe later). After a few months, if it works, they will likely start to taper that down to hopefully 10mg per day (at least this is what I have been reading).

Those are my thoughts

Also, try getting more sleep. It may be hard without the AC, but maybe the doctor can help with that too. Don't take any sleeping pills that relax the muscles. No alcohol either.

Thanks for your feedback. I agree with you on taking a conservative approach. I don't want to have a thymectomy if I can avoid it, but if it betters my chances of a better long term prognosis, then I want it while I have good insurance. Any surgery would cost me $100. Plus I have a separate hospital income plan that pays for outpaitent procedures and procedures. I am also covered if I have to be admitted. I'm in a great spot from an insurance stand point so that would be the only reason. What I am really hoping for is to see if they could do the Tensilon test to see if it relieves my eye symptoms. That would make me feel better about treating the MG anyway they see fit.

I have AC at home, but I do take Xanax at night. .5mg to help sleep.