Incidental Findings!?

[Sammantha]

Hello, i have been go for awhile and do not recognize a lot of the names... I had the ct scan done to rule out pulmonary embolism but they found something... a thymoma..... the pulmonologist said that i need to be tested for Myasthenia Gravis but i had the bloodwork done for that over two years ago. He wants me to go back the neuro that i saw at that time. He was also the doc who read my pulmonary function test, weak respiratory muscles...... He asked if i had double vision, droopy eyes, no and no.... He also said that reflexes are not affected in Myasthenia, no matter what i have to go back to a neurlogist....... That may explain why i get sick ALL the time... Hope all is well, Sam

 

[crystalkk]

Sam,

Yes, that is very common in Myasthenia Gravis. Good luck with the bloodwork, you can be seronegative and still have MG.
Hopefully you are getting closer to an answer....

 

[hopingforcure]

Oh Sam that is very possible, I think that the reflexes can sometimes be affected if your MG is progressed enough.. PLease keep in touch we miss you here..

 

[BethU]

SAM ! ... if you have a thymoma, then that's it. You are on the road back to health, I'm sure of it. This shows that the "characteristics" of MG are as variable as ALS symptoms are.

Bloodwork for MG misses at least 10% of patients. And the surgery for thymoma can be very "small" now, and they are practically always benign. That really does explain everything. I don't want to go overboard, but I am so excited for you, that you are so close to the answer.

Register with the MG Association asap. They are a wonderful organization, and have many ways to help. There is a good MG forum (based in the UK) that is very helpful. Don't have the URL but Google does.

I'm so hoping and praying that this is it. Please keep us informed of developments!

 

[Sammantha]

Thank you all sooo much, when the doc said i had a thymoma i smiled so big! He started to say Myasthenia Gravis, and i said i already know all about it! I dont want to jump the gun without a diagnosis, but i was happy... Not to have a mass in my anterior mediastum BUT to have a huge piece of the puzzle that points away from ALS is what i have been waiting for.... Still have not heard from my doc, i will give it another week before i call. Thank you friends! Sam

 

[rose]

Sam ~ What BethU said is my understanding of myasthenia too! I also think that eye droop is not usually seen in sero-negative myasthenia (MuSK-positive Myasthenia Gravis) it fits with the breathing difficulties you've had if your thymus is affected. This is hugely positively g r e a t news ! I know no one wants to have MG, but its treatable, and you want treatable! (hugs)

 

[awieleba]

Sam~

It is great news to finally have something show up after all this time! I am soo happy for you. Please keep us posted.

Best wishes!

april

 

[Zaphoon]

Sam

This news has to be a bit of a relief for you! I'm hoping for the best for you!

Zaphoon

 

[planningguy]

Wonderful news! It looks like things are starting to come together.

Take care,

Robert