[cait24]

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.

kathie

[Stellatum]

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

[southblues]

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.

[slashman48]

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

[cait24]

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

[pingpongman]

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

[AnnieB3]

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

[slashman48]

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

[cait24]

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

[slashman48]

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