Thank you all so much. You cant imagine how this has helped me get thru this deeply hard day. Having this much physical pain with it made it worse. I think I mentioned that with 2 docs doing so many of the various pushing and pulling things on my head to prove neck strength I have this horrible headache.

I started to write earlier as it was all coming up again. When at the end I tried to thank you all I was afraid with the rest of what I said it sounded like I might be saying goodbye in the permanent way. I didnt post it. The good piece is that something turned around and I started to write an email to y daughter and stuff came that I hadnt thought of that afffected the doc visit and what happened. I will share some of that with you later. It made me feel better. Putting it to words helped.

I am really beat even with the big nap I had. We had the last day of sun that could be used for shorts/some tanning today. I wished I was well enough to go out into it. WE acutally set a record for Iowa of 68 degrees! Thank heaven I told my landlord not to put on the AC cover for winter as I would have gotten way too hot.

I am so grateful I have found friends here. Kind people who know what this is like and share. Mates in this journey.

Annie59

Annie, I'm so sorry you were treated in such a horrible manner. I have had bad luck with several neuros. One of the first neuros I saw told my PCP that I needed to be on an antidepressant because my legs were numb! It turns out that I had neuropathy from a bout of mylitis. Another neuro accused me of faking my ptosis! I had to see over a half dozen neuros before I got anywhere. It's hard having to prove yourself when you feel so bad. Anyway, I just wanted to let you know that I can really relate.

Keep fighting for what you deserve!

Annie, Have you ever had a brain/spine MRI?

Had brain MRI that my internist ordered. Mayo said I should have a muscle biopsy and an MRI as next steps if the blood test for myotonic dystrophy was negative. The MD was brought up because my breathing is worse than normal for MG per se. The pulmo there said this is what he susupected. My neuro here refused to do an MRI so I asked my internist and she did it.

But I was disappointed that she didnt order my neck and spine done as if there is something there affecting my midbody it would be good to know.

Annie59

Bluesky, your piece was so helpful. I do have a peak flow meter and tried to do that about 2 weeks ago. After doing it a couple times for 2 days I was worse from the work of it. Now I knw this may sound odd. I was surprised as I hadnt used it since 2006. Alot has changed. The problem was that using it was making me worse. This is what happens to me with breathing tests.

When the young doc used her stethoscope to ck my breathing and I was breaathing irregularly she stopped and said breath normally. I said I am and my duaghter backed me up. But this in looking back means they took the word of the old neuro I saw about the autonomic dysfunc who blamed me for the symptoms.

I know better what I have to do now. A priority is to not lose my mestinon and I did fight for that tho was so sick and out of it that day so I am proud of myself.

Annie59

ALLY: I can not thank you enough! I am AGAIN being sent off as "being far too difficult/complicated" a case for present neuro.

So I get to go see a specialist/research MS/MG neurologist at Univ Medical this next week (Tues).

I got all my medical records/scans/mris and "tried" to begin list of my priorities of concerns but have been putting it off on back burner.

Too heavy a load to process and muddle through.

BUT, You Have Inspired Me to Persevere!!!

So, I will take your wealth of knowledge /experiences and treasure your wisdom.

I know it will help my next visit and presentation.

With all my heart, ALLY, I thank you.

I just had to say thank you all again. Your words and experience and caring have been a blanket that held me for time as I tried to sort this all out. It got me to a better place.

Annie59