My opthomologist wants me to have a Tensilon test. I have diplopia and started to have ptosis when my Neuro started me on a beta blocker for migraine prevention. The migraines just started a few months ago along with numbness and tingling in my hands and feet. I was found to have low b12 and my neuro thinks my symptoms are all due to low b12 (300's). I have been on b12 injections and SL tablets for 2weeks and many symptoms have improved but not the ocular symptoms. At the end of the day my vision is so bad I can barely drive home. I have paper tape in my car to tape open my eyelids if needed. My neuro has not called me back after many messages and I think he feels MG is ruled out since I am seroneg. I live in central Florida. Does anyone know how Shand's:m) in Gainesville is good at MG diagnosis. I am getting frustrated with my current Dr.

Sandy, How close are you to St. Petersburg? There is a doctor called Dr. Allan Weiss who is an MDA Director and probably one of the best MG experts around. His number is 727-820-7701. I highly recommend him.

You could go see him for a diagnosis and then continue getting management from the other neuro.

You could still see a neuro-ophthalmologist, to have additional information.

How much sublingual B12 are you taking? You will probably need a lot more in the beginning, like two 5 mg. tablets twice a day. Your body has a lot of healing to do! It can take as long to heal as you had the deficiency.

I had a severe B12 deficiency back in 1997-1999. I am now on a maintenance dose of 5 mg. twice a day, though sometimes I take more.

The problem is . . . did anyone figure out what the CAUSE of your deficiency was? If not, then doctoring is not finished. Did anyone check you for parietal cell or intrinsic factor antibodies (for pernicious anemia)? The common causes are that, celiac disease and a lack of stomach acid. Has anyone checked you for celiac?

BTW, my "headaches" from my B12 deficiency went away after a few months. It all depends upon what is causing your migraines. It would be worthwhile to keep a diary to see what foods or activities might be affecting them.

Also, I had MG before I had a B12 deficiency. When the B12 deficiency was made somewhat better, I still had symptoms of weakness and shortness of breath. Sometimes doctors think that only one thing could be going on with a patient at once. That's so not true!

MG is not ruled out. And since beta blockers can make MG worse, that should've been a big clue to your neuro!

I'm sorry you don't have a diagnosis yet. Please get an evaluation, if you can, from Dr. Weiss. They do have MDA clinic days, which might be free. So call and talk it over with them. I hope you'll get some help soon, whatever is going on.

Annie

Thanks Annie for the info. I will look into Dr Weiss. St Pete is a bit of a drive but would be worth it for the right diagnosis. I have a colonoscopy coming up and have concerns about what will be used for sedation. I know many drugs cause problems for myasthenics. Another reasonthat getting a diagnosis is so important.

Today I started with new symptoms. I started the day out with significant blurred vision and prosis. Early afternoon I started having slurred speech ; a lopsided smile and extreme fatigue. I called my neuro and have an appointment for Thursday morning. The nurse told me that they don't do Tensilon tests in the office and she was not sure where one could be done. I don't think they have any Mg patients there. I am a bit worried

Sandy, Do you have a hospital near you? If you have MG, it sounds like you are progressing rapidly. The best thing you can do is go to an ER. If it's a larger hospital, they can do a Tensilon test there. They can assess your breathing (are you short of breath?) and do a thorough neurological exam. They can check your oxygen saturation (O2).

Have you ever had slurred speech or a lopsided smile?

MG can progress quickly in those who aren't on treatment yet. The best place for you is in an ER. Give them your neuro's name/number and tell them that he suspects you have MG. Ask them if they can do a Tensilon test because your neuro's office doesn't. Tell them that your symptoms have been progressing in a short period of time. You can tell them - calmly - that these symptoms are not your normal!

No, I'm not telling you exactly what to say! I'm giving some ideas of what to say, since you're new to this.

Don't mess with this, okay? If you can't breathe well, walk well, are generally weak or can't swallow, that's the time to dial 911. Do you have someone who can take you to the ER, be with you and stay there with you? That's always very helpful. Sometimes, they take you more seriously when someone is there with you. Stupid, right?

Okay, don't panic! Just stay calm and get some help now. They can help you in an ER. You can't help yourself sitting at home. I really hope you will get some help soon. It'll be alright. You can handle this! Let us know how you're doing.


Annie

Annie
Thanks for your suggestions. I am doing better today. My breathing and swollowing seem fine so far. I do find I have to clear my throat often, I was thinking due to allergies. Vision still a problem today but fatigue better. I work part time so I am off today and plan to rest. It is comforting to have someone who understands to talk to. Thanks for being there. This time spent waiting for a diagnosis has been a challenge.

I had tried everything to make Shands in Gainesville work for me, but it kept failing. After close to a year of nightmare problems, and with constant support from my insurance provider, I have gone to St. Petersburg. This drive is two hours from my home, in Ocala, but more than worth the drive.

I am seeing a neuro doc in ocala right now but not too happy so far. Did you see anyone in ocala?

Yes, I did. It was about six months after starting with Neuro's up at Shands, and where I had gotten my MG Diagnosis. I wanted a second opinion, but quickly learned through this experience, and going to Shands that it is extremely important to seek out people who have "special interests" in MG. There aren't too many of them in Florida, but if you look on the Myasthenia Gravis Foundation web site, you'll see three main ones listed: one in Jacksonville, one in Miami, and the other in St. Petersburg.

I have to recommend my own neurologist. I did research on the doctor, and talked to patients of his, before I had my own evaluation. As far as good disposition, he is a rare bird. Completely attentive, compassionate, and I never met a doctor I liked more. He did my cerivial fusion. Dr. Keven Boyer, Bradenton Florida. 941-750-0602. He is known for tackling difficult cases in all fields of neurology. He was the A student.... I really hope you can get a DX. I wish you all the best. ginnie