Mike's baby sister still slowly working for diagnosis
 

I have seen more incompetent doctors than I care to mention. Rode in ambulance once and driven to ER once. My PCP doctor finally called in a consultant who was knowledgeable. She ordered 5 days of solu-Medrul infusions and added prednisone and time span Mestinon to my meds. Immediately referred me to my third neurologist. He says he is certain it is MG. Referring me to Gainesville MG Clinic. Ordered brain MRI, Ct scan of chest, pulmonary function test, Gillian's of blood tests, and emg. Currently my waxing and waning symptoms are double vision, squinty left eye, arm and leg weakness, difficulty swallowing, nasally speech, staggering, shallow breathing, extreme weakness and bumping into things. I have an appointment with neuro opthamologist at University of South FL in April. Wish me luck.

Hang in there Sis. It is not a easy road.
Mike

Jane,

If you are near the central Florida area, (Tampa) dr Allan Weiss is supposed to be the most knowledgeable MG expert in Florida. I know of several people in our local support group that feel he saved their lives

Lisa

Geez, your family should be a medical study!

Jane, you'll be okay. You sound awful, but at least they BELIEVE you have MG! As if any of us doubted it!!!

I hope you will be on a steroid taper right away. Please consider another treatment. Prednisone can hurt you so much in the long run. It causes more illnesses, such as infections, brittle bones, diabetes, and so much more. I know they had to do the Solu-Medrol to rescue you, but they really need a long-term plan.

Dr. Allan Weiss is great, but he is in a smaller clinic. He diagnosed me and I can't say enough good things about him. 727-820-7701 I'm not certain if they can do a SFEMG there (not that you need one). A SFEMG will probably look fairly normal while on steroids anyway.

Allan S. Weiss
St. Anthony's Neurology Group | Muscular Dystrophy Association

There's nothing like MG. It's so obvious that anyone should be able to diagnose it. No other disease, besides LEMS and a CMS, has fatigable weakness.

I hope you will take really good care of yourself!!! Just because you are on steroids does not mean you are superwoman! :cool:

What else do you need to know? Take it easy in that Florida heat, even though it's not spring there yet! And traveling can be rough on MG. O2 saturation goes down in a plane. An oximeter can be really helpful in general. I know what my normal O2 is and when I'm tanking in part due to those readings.

I'm glad you are finding some good help!!!

:grouphug:
Annie

Thanks so much for your responses I have an appointment at Universith of South FL with a Neuro Opthamologist in April. I had previously asked my PCP to refer me to Dr Weiss in Tampa. However, my new neurologist who I saw on Thursday wants to refer me right away to th MG Clinic in Gainesville, FL. Think maybe I will see what happens with new Neurologist and Gainesville but still planning that trip to Tampa in April. Maybe I should call and make appointment with Dr Weiss. I could always cancel if need be. Decisions? But so thankful to be finally moving forward. Thanks again friends and brother

Jane, If it were me, I'd stick to the plan in place. You may not even need to see a N-O. Being seen right away, especially in your current condition (meaning not stable) is the best plan. Do you live close to or in Florida?

Do you know the MG specialist you are going to see? That's the one point that might concern me. If they are just tossing you to a MG clinic, where a resident or a "regular" neurologist were to see you, that's not what you need. You need a MG expert to help you. Make sure you know WHO they are referring you to. You can easily research the reputation of that doctor once you know.

It just isn't enough to go to a MG clinic. ;)

Hope that helps.

Annie

She is in Panama City.
Mike

[QUOTE=AnnieB3;1237551]Jane, If it were me, I'd stick to the plan in place. You may not even need to see a N-O. Being seen right away, especially in your current condition (meaning not stable) is the best plan. Do you live close to or in Florida?

Do you know the MG specialist you are going to see? That's the one point that might concern me. If they are just tossing you to a MG clinic, where a resident or a "regular" neurologist were to see you, that's not what you need. You need a MG expert to help you. Make sure you know WHO they are referring you to. You can easily research the reputation of that doctor once you know.

It just isn't enough to go to a MG clinic. ;)

Hope that helps.

Annie[/QUOTE
Thanks so much Annie. I've probably really messed up things here, but I want answers SOON. The EMG that was done today did not show MG. The Neurologist said it didn't surprise him that they were often negative. What the heck? Why do the test? Makes no sense to me. Now he mentions Dr. Michael Rivner at the Augusta Medical College where they recently discovered the two new antibodies. Who knows? So I am letting my PCP begin the referral process to Dr. Weiss at the University of South Fl and the Neuro initiate the referral to Augusta Medical. I'll see which happens first and which looks the best and then cancel the other appointment. I have waited months and months for appointments over the last year and a half - appointments that led to nowhere. My PCP seems to be very knowledgeable about mg. Calls to check on me sometimes twice a day. She told me to notify of her immediately of more weakness and we would set up more infusions until we can get an appointment. This hamster wheel spinning is driving me bonkers. OK...vent over.

Thanks, Mike.

Jane, The problem with "more infusions" is that Solu-Medrol isn't that kind of drug. More steroids isn't necessarily better. The drug can make MG patients worse before they are better. They should be trying IVIG or plasmapheresis next, which is why you need an expert (no offense meant to your PCP).

You don't have to see Dr. Rivner in order for the LRP4 to be ordered. Stick with the original plan. ;) Seeing who is available first is a good plan.

EMGs are often negative, especially after having steroids. Duh, doctors. You are in bad enough shape now that going off of all meds just to prove MG is dangerous. Sure, there are the very few patients who test positive on a SFEMG even when on immunosuppressants, but that's like finding a needle in a haystack.

Do you meditate? I don't mean breathing deeply while sitting! There are many guided meditations that can help give you an escape from the stress of MG or doctoring MG. I meditate daily. It's important to either be in a recliner or in bed when a meditating, due to MG. The muscles will be more relaxed/weak.

One of the best meditations is pretending that you're a leaf on top of a tree, in a beautiful and peaceful garden (or a beach or forest or whatever you prefer!). As you float slowly down from the tree, count slowly backward from twenty in your mind. Once you reach the soft ground, you should feel calm and the body light. Meditation may take some practice!

Stress is not good at all for MG.

The other issue that people don't think about with MG is how rough hypoxemia is on the heart and brain. That's another reason why getting help as soon as possible is best. During my crisis, my ECG was showing ischemia. Not good.

And only you can tell if you are truly up to traveling. You may need to check your O2, strength, and blood pressure/pulse before leaving. Make sure you have enough time to rest after the appt./tests.

Have you ever been to Schooner's (Panama City)? It's one of my favorite webcams. Very peaceful. And they do a shotgun (harmless) at sunset.

Schooners Sunset Live Web Cam

Don't worry about what doctor you see. Fate has a way of working things out the way they should.

:grouphug:
Annie

I'm with you all the way Annie. And YES, I love Schooners. Thankfully, we travel in our motorhome and I am able to crawl under the covers in my very own bed and rest away. I do some meditating; however, mostly I find myself just being limp as a dish rag and as brain dead as a pile of poop. And the emg? Prednisone the day before AND I drank a cup of coffee! Duh. As far as Drs.- at this point first come first serve. I am aware that the Solu-Medrol is the wrong answer, but this is the first Dr. who has tried anything. Wish I could find a way to gently educate her, but for now I am thankful, cautious, and frightened of any medical care I can get, OK, can we laugh to keep from crying? Got up to use the potty this am (TMI) and when I stood up I fell headfirst into the bathtub. Ok, it really was funny. Thanks so much!

I like humor as much as anyone. And I do laugh at myself when I fall as well. But being so bad that you fall, frankly, is not funny. A fall alone can injure or kill someone. MG can, too.

What I like about Schooners, besides the beach and sunset, is the fact that it is such a fun place. They do sand castles, have celebrations with bands, and I've never seen anyone hurting anyone else. True community.

I'm not as upbeat lately as I usually am. My mom isn't doing great. I'm her health advocate, and am double doctoring. It's amazing how often doctors make mistakes, keep info from patients, can't speak openly around us, and need a few tries to get it right. Sure, they can do great things. Having the best care is up to each of us. But why do they make that so hard to receive?!

I hope you are able to be seen soon, Jane!

Annie

:Head-Spin:

Annie,
Sorry about your Mom, hope everyone better soon.
Later--Fred

chest pain
 

Funny you just wrote this, but sadly I didn't remember. Had an early morning visit with Dr yesterday morning because the mg was rapidly becoming worse. While driving to my appointment my chest for the first time in my life started hurting and thrice went up to and tightened up my neck. Thought often of pulling car over and calling for an ambulance but I am afraid of these hospitals. Made it to the dr and chest had thankfully quit hurting. Was thrown straight into ekg mode and the ekg came back abnormal. Off I'm sent to spend the next 10 hours at the local stupid hospital. Many tests, no heart attack, no blood clot, no pneumonia, but a high white blood cell count. Diagnosis....myasthenia gravis. Well duh. I sort of knew that but had to be sure. Start more infusions today for 7 days. Was assured by my PCM that she and my neurologist care greatly about me and will not let anything happen to me. Whe lost her voice in tears when telling me how upset she was that I have been so mistreated for so long. Fears that lack of treatment has presented me with an exasperated case that is going to be quite difficult to maintain. She implored me to trust Dr. Jacobs because he has called her three times and visited her once to discuss my condition. The reason he wants me to go to Shands Hospital is they use plasmapherasis ? and robotoic surgery and he wants me seen as soon as possible. Thoughts? I appreciate. I certainly hope your mom is doing better. I feel your stress.

Oh, Jane, how awful! You SHOULD have dialed 911. Next time, do that. Hopefully, you won't have a next time. I still don't find this funny! ;)

Try not to fear a hospital. Sure, they can make mistakes. But they are also very good at helping people.

The doctors need to investigate that high white blood cell count further. I wonder if you broke something during your fall or have a hairline fracture. Please, ask someone to check that out. A high WBC is not a symptom of MG. Have you or anyone else looked your entire body over for bruises or other signs from the fall? If not, someone should.

Your doctor sounds very kind. That really helps.

But she might be wrong about how your MG is. What happens when MG isn't treated well enough, or pushed too far, is that it gets so bad that it takes more time to recover. That's one reason I mentioned that steroids do more harm than good in the long run. I believe that they create "brittle" MG. MG can be made to be stable again. But it does take proper treatments and time. And a MG patient who doesn't push themselves to the limit. Ahem. You are as much in charge of how MG does as doctors are. Probably more so.

Right now, you need to think of yourself as being physically bankrupt. You can't afford to expend/spend any energy. Your body needs a break, probably for months. Take that seriously or you will just be back in the hospital.

Shands is a long trip from Panama City. Can you even handle a trip like that now? Are they the only place close that does plasmapheresis? You may need a medical transport. You really do need a place that has experience with MG!

You can't have a thymectomy in the condition you are in. And it might not help. It could, but you have to weigh the very real risks of surgery against any potential benefits. You need to be stable first, AND decide if that is right for you. Ask a lot of questions. Or ask, "Tell me everything about a thymectomy," and let them do all the talking. You need to rest those muscles, too!

Do you have someone who can be with you if you go to Shands?

I'm sorry that you are going through so much. But the good part is that you are receiving care now. But the rest of the care is up to you. Don't walk far. Don't do very much at all. Use paper plates, etc. so you don't have dishes piling up. Seriously, every little thing in your life needs to be rethought. You can't live your life the way you used to, at least not now.

I hope you will recover soon. We're all here if you need us!!!

:grouphug:
Annie

BTW, get copies of ALL of those records. Doctors don't tell us everything. And they might see a test result as nothing, when it may be a clue to something else.

Honestly working on all of the above. Promise to quit trying to overdo. My brother is the only person in my corner. I think these two Drs have my best interest at heart. One even cried over how I have been mistreated. She gathered up all my records. We will travel to Shands in our motor home and I can sleep all the way in my own bed😎 Oh yes. A can of green beans fell on the top of my foot.two months ago and broke it. I didn't want to stress myself by the follow up appt this week. It no longer hurts but maybe I should have gone😠