still trying to get diagnosis
 

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.:mad:

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.

worsening symptoms
 

:Sigh::Sigh: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? :cool:

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.

:hug:
Annie

better today
 

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.:hug:

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.

hi Sandy
 

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:hug:

Referred to Mayo Clinic. anyone with experience?
 

Saw my neuro doc today because of worsening symptoms and he is sending me to the Mayo in Jacksonville. My colonoscopy has been postponed until after diagnosis. I have altered my work schedule so I don't work 2 days in a row. I have to decide about cancelling a trip to Italy at the end of may. All refundable except airline ticket. Anyone have any experience with the Mayo?:confused:

Hello Sandy
 

I have experience with Mayo clinic. I went there for DX. It was an intense experience, as they do have you see a number of specialists, one right after the other. If you want a DX, that is indeed a good place to go. In my case they got to the bottom of the problem. I was there for about 4 days. The only thing I didn't like was the last day when they gave me the results. I was still in the hospital gown. I would have rather gotten dressed and felt more together to receive the not so good information. I have an auto immune problem and was referred to Columbia university medical center for years of a trial study.
I wish you all the best in going to Mayo clinic. Expect alot of tests. They were nice to me however, and I am sure they will be for you too. ginnie:hug:

The only thing that I've heard about Mayo, and I'm sure anyone who has the experience can correct me if I'm wrong, is that they do not treat seronegative patients. Thus, is going there, you might still not know for sure if you have it. But, again, it's what I've heard.

Sandy, I think that the worst thing you could do would be to go to a foreign country while you're still undiagnosed. What if you go into a crisis when you're there? I've had that trip over the Atlantic and it is NOT fun for someone with MG. My O2 saturation went into the 70's while up there in the plane.

Don't sweat Mayo. They will do everything they can to figure out what's going on. And they do know that seronegative does not mean no MG. They might not be as "aggressive" with treatments with seronegs but you are not doing well, whatever is going on. You need help pronto.

MG has 3 antibodies now, though only tests for 2: Acetylcholine Receptor Antibody, MuSK Antibody and LRP4 (no test available yet).

http://www.ncbi.nlm.nih.gov/pubmed/21814823

They can do pulmonary function tests, EMG/RNS/SFEMG, rerun a bunch of blood tests and even do their odd little tests like the "stair step" test to see how many times you can go up and down on two steps before you O2 tanks, your pulse goes too high or you fall over. ;)

I hate to say this but I will anyway. Some Mayo neuros can be, well, arrogant. They often don't like intelligent and assertive patients. So try not to go in and tell them what you think is wrong with you. Just tell them your symptoms, when they began and how they progress (i.e., weaker legs when you go up stairs). Obviously share the sleep study results with them. If you've written down your symptoms, that might help too.

I hope it goes well. Rest as much as you can. If you have MG, a trip to Mayo can really wear you out. They do have people to wheel you around if you need that, so don't be shy about asking for it.

I don't know how you guys who have MG can live in Florida. My MG can't take heat/humidity.

Hang in there, Sandy. I'm sure things will go great at Mayo.

Annie

Hmmm... was one of these written by a ghostwriter? :Writting: Or did I miss quotes or something else?

and from September of last year:

:sunchair: :trampoline:

Sorry to remember these types of details about other people and ask the above question, but because of what would happen to me in Florida (some combination of :Sick: :thud: :OuttaHere:), I remember what people write and I'm curious ...

Well, one doesn't have to do with the other. Heat and humidity make my MG rapidly worse, no matter what the geographic location is.

What makes me feel energized is the large energy center, which is on the world energy grid, aka ley lines. There's also one in CA. It energized my SOUL. I wish it would've done the same for my muscles. Think of what a good night's sleep does for you versus a lack of it.

There are also places of "vortex" type energy, such as the zone of silence in Mexico. There is a LOT we don't know about our world.

Or maybe it was the fact that I love the beach, walking on the sand and eating grilled lobster. And that I tried not to go to FL unless it was in the cooler months!

Ghostwriters don't exist on this forum because you can't log in with another name, due to IP addresses, etc. Unless you get the okay to change your nom de plume. Good grief.

Does that adequately answer your persnickety questions? ;)

Annie

(The real, the one, the only, who is always honest and way too worn out for this kind of . . . I'm not sure what. Cross-examination? Sheesh!)

Lots to think about
 

Thanks for the great info everyone. I just ordered a sleep study type pulse ox.
Annie-My sister(RN) agrees with you about the overseas travel. My husband is still having a hard time with all this. He still thinks I can go. I hope Mayo calls and wants to make my appointment for the time we would be gone. My sister will come to Mayo wih me as well. She thinks my husband needs to be educated about myasthenic crisis and what to tell an ER doc. Any suggestions where to get info I could print for him to carry? This group is the best! :grouphug:

Sandy,
Everyone here has given you wonderful advice. I hope your visit to Mayo goes well.

I was seen there several years ago after 6+ years of symptoms. I had a positive experience and fortunately was given options for treatment. I am seronegative, EMG negative, though tensilon test was positive. Treatment recommendations were based off of this positive test and clinical symptoms. I feel that the recommendations were as aggressive as they would have been for someone who was seropositive (i.e., prednisone, IVIG, long-term immunosuppressant).

Had I not gone to Mayo I believe that I'd still be searching for answers today. I hope that your experience there is as positive as mine. Feel free to PM me if you have any specific questions.

Cate

I think explaining inability to do something because it makes you ill is like explaining color blindness. ("Oh hey, but you have to see exactly what I see -- and you call this color by the same name I do so you must have the same experience.")

Even just for heat, I found I had to say "I don't like ..." "I can't" all the time. I'd tell people that technically I "liked" or "wanted" to be in hot places but couldn't if both 1.) I had their attention for long enough and 2.)they might have the intellectual capacity to understand it. (That was rare).

I expected that this might be the distinction you were making. I posted because I can't talk like that and have people get it. I wondered if you deal with sharper people on a regular basis and hadn't been reduced to speaking in the way I must.

The ghostwriting comment was to make light of this distinction, be very silly, and elicit a laugh. Following up on my last post with this detailed explanation is a little more serious than I wanted to be ;) but I feel bad that what I wrote could be interpreted in another manner.

With more specific reference to some of the issues in this thread, you can plug in "can't fly" for "can't be in the heat" above. That's another discussion I've had "fun" with through the years. I've found that people are even less likely to understand that flying can debilitate or kill you than that heat can.

(But yes, despite the fact that I get the distinction, if anyone writes that s/he loves flying -- and that s/he flew with O2 in another post, I may show up with a line or two :D )

I would recommend seeing a neuro-optomologist. I had faster results of MG going that route than through a neurologist. Also ask for a single fiber EMG, the diagnostic test for MG in seronegative patients.

Good luck
kathie

thanks
 

Thanks all for the great suggestions. I have been able to talk with 2 people with MG in my area. They have been very helpful. Also special thanks to Annie. I am feeling better and better about all this. Now just have to wait for Mayo would call.
Sandy

I agree with Cait's (Kathy's) post about seeing a neuroophthalmologist

I had my first appointment at Mayo scheduled with the neuro-ophthalmologist and then had a neurology consult with a neuromuscular specialist later that day. The neuro-ophthalmologist is the one that performed the tensilon test. The fact that that test was positive really helped things to move along with the neurology appointment.

I hope your appointments go as smoothly.
Cate

One thing I learned through the process of getting diagnosed (I am also seronegative), is that waiting on a referral can make for a long wait. If you haven't, I would encourage you to call and check on how the referral is progressing. Things get lost and forgotten. Our emergency is not always their emergency.

I was very excited to see you were considering seeing Dr. Weiss as I have heard so many good things about him. Most notably his ability to see you quickly and his openness to LOOK at your signs and symptoms and diagnose you. Did you ever call him?

I have not called Dr Weiss's office yet but have been considering it. My insurance (Tricare) is very restricted and I would need the referral. I have talked to the office staff and they asure me it is moving along. I plan to call every day until it gets sent out. I started taking Huperzine A yesterday and it seems to help my breathing and weakness; not my ocular symptoms though. I have cut my work schedule down to 2 days a week as well. Thanks for all the support and good ideas. This is a stressful and exhausting process.:grouphug:

Just from personal experience I was told there was nothing wrong with me by many Doctors, Including the Neurology department at the Cleveland Clinic. I failed the Single Fiber EMG test at the Neuro Clinic in Florida and the doctor there seemed baffled after I was postive through the blood test. Bottom line, I have mild symptoms and the blood tests from multiple labs throughout the years that say I have it. Don't give up and hang in there.

Sandy, ER care is so damn iffy. Call your insurance company and say that your doctor is dragging his feet. Ask the lovely people at TriCare if they would rather have you die or get a diagnosis and treatment. Maybe even record the phone calls :eek: Good grief!!! Then ask if you can go see Dr. Weiss. If they say "No" then ask if you can quote them on that. This is just all silly. BTW, I'm being sarcastic. Don't make enemies of your insurance company!!! Well, maybe except for the asking if they'd like you to die part.

If you can get in to see Dr. Weiss - even if it's a stop gap measure until you can see someone at Mayo - do it! Dr. Weiss is exceptional. They do have, like I've said before, MDA day where the visit is free (at least I think it still is). If the receptionist can't help you, ask to speak to his nurse, who is also amazing.

I just searched TriCare. Guess what? Dr. Weiss is totally covered under them (see below). Work the system. As you can see, he's on page three.

http://hmd.humana-military.com/ProvS...Addr=&AddrZip=

You need someone to evaluate you now. No more waiting for them to deem you worthy of care. Though do dial 911 if you get bad, okay?

:hug:
Annie