SFEMG today
 

Well I had my long awaiting SFEMG today (I am seronegative). The doctor said he would have the results to the neuro-optomologist by next Monday. He did not tell me they were abnormal but he shook my hand when I left and wished me the best of luck and said that he hoped these tests results would get me the treatment I needed to feel better. So I kinda think I know the results already. I will call the neuro-optomologist next week to be sure. Then I need to make a plan on how and what to tell my daughter. She will be turning 15 in 2 months.

I would appreciate any advise or feedback on your experience on what and how much you told your children. And as always thanks everyone for your very needed support and sharing of personal experience.
:grouphug:
kathie

Kathie, I think the doctor who did the SFEMG got it right: the point of a diagnosis is so that you can get the right treatment. Your daughter already knows you're sick. Now she can know that the sickness has a name and a treatment plan attached to it, and that the prognosis, while never certain, is clearer. Those are good things.

I have seven children, ages 9 to 23. I don't believe that my illness has been emotionally traumatic to them. In general, the rule for explaining difficult things to children is to tell them the truth, but to tailor the level of details you give to the child's readiness to hear them.

I'm seronegative too, and it took 15 months for me to get a diagnosis. When I finally got one, we all rejoiced. It wasn't that I was happy to be sick, but I was happy that we could now proceed with a treatment, that my symptoms wouldn't be dismissed as "merely" (as if!) psychological, and that it wasn't something worse, like ALS. Those are things worth celebrating!

Abby

I kept a health problem that I had a secret from my son when he was studying abroad. He came home for a visit. He was very hurt that I had been withholding information from him. I think that I would talk to her about it honestly and openly. She may be relieved to find out that it is not something worse like ALS or who know's what she may have thought up by now.

Hi, Kathie
Good luck with everything. I was also tested seronegative too. I just had a Nerve conduction, EMG, & SFEMG tests done Monday and have a follow-up on Wednesday. Then they called Tuesday and want me to come in earlier for my appointment so maybe I'll have a diagnosis then. It's pretty bad when I'm hoping to have a Disease just so I can move on and not be stuck not knowing. My symptoms are getting worse so maybe it showed up in the tests.
Good luck with everything
Bob

Bob, Celeste and Abby, Thanks for the support. I have to say I feel more comfortable now and confident that I will get further productive treatment. The doctor that did the SFEMG was very nice and very knowledgeable. He talked about additional treatment options besides mestinon such as celllcept, IVIG and plasmaphoresis. He mentioned that my neuro-optomologist may direct me to a neurologist for further more aggressive treatment. If so I think I will want to go back to the neuro that did the tests. I like his manner and how well he explained everything. I did find out that my appointment did not get bumped up for a cancellation (originally suppose to be June) but that they bumped me up because of my worsening symptoms. The whole staff seemed to be very compassionate and professionals. I feel like I am finally finished the run-around and have met the group that can competently and compassionately treat me. I always think things happen for a reason and that this is the way it was meant to be to find the right doctor,

Bob, I hope things go as well for you. I share your relief in knowing that a diagnosis is finally at hand. Let us know how you make out.
Thanks again
kathie

I'm so happy for you!!! I would go back to the Neuro you like. It means a lot to me. I have a Neuro-muscular Dr I see about every 6 months and don't think I would want to see him more regular. His bedside manner is horrible but he knows his "stuff".

Best to you
Mike

Kathie, I'm glad it went well. I do hope you will get the best treatment you can, for you really need it.

I hope you will too, Slash.

Annie

Well, my EMG & SFEMG came back negative. He wants me to go to the Cleveland Clinic for more testing. I asked him about a Tensilon test & said
he couldn't do it there. I guess I'm gonna ask them about it when I go to Cleveland. I'm about 40 some miles away so it shouldn't be to bad. Hopefully I can get some answers. Still seems like Myasthenia Gravis is the most likely candidate. Going through this makes me appreciate some of the little things in life that we all take for granted.

Thanks everyone & good luck

Bob, Sorry your diagnosis is delayed. Do you have an appointment for Cleveland yet? I hope you do not need to wait to much longer.

best of luck,
kathie

Haven't heard anything yet. Maybe they're looking over the tests I already had.

Have an appointment at the Cleveland Clinic tomorrow! Hopeful that I get a diagnosis. Also have an appointment with another Cleveland Clinic Neurologist next month that has an office in Twinsburg, Ohio which would be a lot closer drive for me or if someone else has to take me. Seems like the other doctors don't believe how bad my symptoms are getting, or if I really have Myasthenia Gravis. With a diagnosis I'll at least know what I'll be facing. Have been testing my hand/arm strength with a hanging scale by holding in one hand & pulling with the other. In the morning I can pull up to 20-25 lbs., an hour later 10-12 lbs. then down to about 5 lbs. or less. That's after just sitting around doing nothing.

So sorry Bob that you are still in diagnosis limbo. Hopefully between the two specialist, you will get a diagnosis soon.

kathie

Thanks, hopeful they figure it out. The worse part is getting hassled from my employer. They want me to get a release for work, but it has to be with no restrictions or fill out FMLA papers again. I don't see them giving me a back to work release when I can barely walk, talk or use my hands. I wouldn't be able to climb the ladder to get in the Loader at work anyway, let alone drive it safely. The 1st Dr. put an estimated return to work date on the FMLA papers & an Undiagnosed condition. They said after the Cleveland Clinic appointment I have to have either a return to work or FMLA papers filled out again. The merry go-round keeps going 'round. Hopefully the Clinic will see how bad I really am and will help me out so I don't lose my medical benefits.

I am lucky that I have a desk job and use a computer all day. It allows me to be more functional longer. When I am bad, the hardest part is walking to meetings and the bathroom, and talking slowly so I don't slur my words and dribble. I am less productive than I was but not so that my employer has complained. They know I have difficulty walking, some days more than others. I use a lot of vacation and sick days but have been able to remain working. They know I have a medical condition and use all my personal time for doctors and test. And I take a lot of pills. Even when my arms get weak, I usually can use my hands to type slowly. They have not asked what is wrong and I have not told them. I think they think I have cancer since I had abdominal surgery last year and that is when all the MG symptoms got so bad. I think that makes them more tolerant of my situation. They probably think I am dying rather than have a chronic degenerative disease. People watch with intent as my feet drag and my eyes go weird. They often ask with great interest how I am doing.

Is it possible to transfer to a desk job at the company where you work now? You probably do not want to do anything drastic that might jeapordize you health benefits.

Unless something drastic happens, like remission, I know I will eventually end up on disability. I am trying to get myself in a financial situation where I can live on disability income.

Try to find out your rights and make a Plan B so that your employer is not stressing you out so much. I did that and I am able to relax more about my situation.

Best of luck and keep us posted.
kathie

My primary Dr. gave me slip not to drive heavy equipment & work sent me home saying I had to be 100% no restrictions, so they're not going to let me do light duty work, even though one of the truck drivers is doing light duty right now in the office on Workman's Comp. They pretty much make up & change the rules as they go.

Have an appointment with the EMG lab at the Cleveland Clinic 3/22/13 for EMG/Nerve Conduction studies & Repetitive Nerve Stimulation. The Neurologist there said my previous Neurologist couldn't have done a SFEMG on me because he said there's only a couple of places that can do that test. He's also going to test my arm & leg. I also notice my condition worsening somewhat lately. Have been having some trouble swallowing (especially hamburger, which I love) & choked a few times on my saliva. Also noticed my voice getting a lot softer & harder to talk, and that I'm not able to whistle anymore. When I try to whistle it seems my tongue isn't coordinating. I guess it's just another symptom to deal with. I'm off work right now until I get a diagnosis, medicated and then I'll take it from there. If that's not enough, now my dog who has Diabetes, looks like he's starting to go blind. I'm almost more worried about him than myself.

I know how you feel I have a dog that is 16, blind and deaf. I carry him out and pick him up and bring him in. He lives with me on our lower floor so I am with him 24/7.
Mike

Yeah, he's always there when you need someone. It's mostly in his left eye it's looks like it's a blueish-white cloudy film on his eye. I notice when I throw him his toy or a treat he has trouble seeing it. If I get diagnosed and have to get on Disability I'll at least have time to take care of him.

Bob, There is only 1 neuro in a 90 mile radius of me that does an SFEMG. I had to wait months. You are lucky to get an appointment so soon.

Be careful on the choking. I had to switch to mostly fish and only meats cooked to tender in a stew or casserole.

I am sorry about your dog. My dog has been my constant companion. She is by my side constantly and seems to sense when I feel weaker. She just sits on my lap and will not leave while I rest on the recliner.

Best of luck
kathie

Kathie, I sent you a friend request - I think that you and my MG hubby go to the same neurologist and neuro-opthamologist, based on your quotes. Would love to chat privately. Check your profile for the request.

Done with the Neurologists. Nerve Conduction test & EMG negative so they say nothing could be wrong with me even though my condition is worse. They're trying to say it's all in my head. Did go to a Rheumatologist who said there's diffidently something wrong and it's not just in my head. He did a way more thorough exam, strength testing, asked more questions & actually listened to what I had to say. Also have been getting a tremor in my right thumb and hand, losing sense of smell & taste, slow gait & short shuffling steps, and small unreadable handwriting. From what I've looked up it sounds more like it could be Parkinson's than MG. In the meantime I back working as long as I can & hopefully get a diagnosis sometime soon.

I am so sorry you are going through this. Does your rheumatologist have any suggestions? Did you go to a neuro at a big teaching hospital?

so sorry
kathie

Seen a Neurologist at the Cleveland Clinic who told me since nothing showed up in my Nerve conduction test & EMG that there wasn't anything wrong with me and there was nothing else he could do for me. The Rheumatologist took me off my cholesterol medication, had me do more blood work and after a month he said he might have me get a muscle biopsy done. He and my PCP are the only ones that would take the time to listen to & believe what I had to tell them.

I'm still learning about MG and other neuro-muscular diseases. I think that what the doc said above is just plain cruel. It takes almost no time to 'google up' the fact that these diseases aren't fully diagnosable.

Why would a supposedly educated, compassionate doc make such a comment? Good luck to you slashman.

Maybe he had so many patients to see or didn't have the time to do the investigation work. They probably just want the patients they can easily diagnose. At least my Rheumatologist listens to me and seems like he really cares about finding what's wrong instead of treating me like another number.