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Jun 30, 2015 · Myasthenia Gravis in Brain & Nervous System

I just found this in my drafts from June 7th In on my way to Mayo clinic now for my follow up with neurology and hope to see rheumatologist.

My dog was confirmed to have Lyme disease and so I hope to have that test run. Perhaps chronic Lyme disease is the answer.

I’m bringing a CT from the dentist showing some degeneration in the jaw cartilidge because of…inflamation. Inflamation is a Common denominator.

I read about amyloidosis

>

Jun 13, 2015 · Myasthenia Gravis in Brain & Nervous System

I’ve had a lot of anxiety with this. I had my follow up appointment at
Mayo- it was with neurology- I had contacted them thinking I didn’t need my
neuro visit…that I needed follow up with rheumatology. They said I
needed it

Drive down the day before, stayed at a hotel then went to my appointment in
the morning only to hear the doctor say “I don’t know why we have this
appointment when I could have told you anything in the phone. I can’t
interpret any rheumatology labs”. She tried calling that dr multiple times
and when she finally got through they said the de was in Rome for the
week. My neuro mentioned to the nurse that the rheumy’s notes weren’t in
the system. She told them to look into the missing notes and to call her.

I walked over to rheumatology and asked for another rheumy dr to review the
labs. I guess that couldn’t be done since the dr notes were missing. I was
given the direct # for the rheumy nurse – left a detailed msg and stated
that I drive to town and would wait in the building until they returned my
call.

Went to the Patient experiences department and filed a complaint. I have my
employer and short term disability people waiting on answers in addition to
my own need for answers (and husband). He said he would have the dr call
me Monday.

The nurse never called on Thursday or Friday. Unprofessional.

Now I wait

Jun 6, 2015 · Myasthenia Gravis in Brain & Nervous System

Anne,

Thank you for you response to my post. I am not on statins and never have
been. On day two of my appointments last week I was told that i do not have
MG but that it is something autoimmune. I have seen 70 labs posted this
far to my Mayo Clinic app and my abnormal tests results are in reference to
proteins and inflammation.

I return to Mayo On the 11th to meet with my neurologist – no follow-up
visit has been scheduled with my rheumatologist. Locally I’m used to being
able to email my doctors so it is a challenge to not have the option of
submitting questions electronically.

I know that I need to return to work but admit that I’m concerned about how
my symptoms will respond to the stress of it. I don’t know if it is a
symptom or a response to the pain which impairs my cognitive function.

Patience has never been one of my strengths.

Deanna

May 24, 2015 · Myasthenia Gravis in Brain & Nervous System

I have my initial consult at Mayo in Rochester, MN Tuesday and will be heading there tomorrow. I am surprised with how nervous I feel.

My symptoms began a few years ago with what I thought was arthritis in my hands. I’ve never tested positive for any inflammatory conditions and the pain has spread to most of my body. I have muscle weakness, fatigue, and now when I smile my cheek muscles quiver visibly. I’ve been nervous to think much about it since I have an aunt who died from ALS. I finally saw a neurologist who tested me for one thing only- Myasenthia Gravis (MG). I had never heard of it.

I tested positive and he stated he feels it’s a false positive. Still, he started me on a prescription for it. He also told me the pain I have would have nothing to do with MG. I asked him, since he felt it was a false positive, what else would we test for- he shrugged his shoulders and said he isn’t God and to feel free to get another opinion.

That leads me here. I have fears- what if I leave with no answers? What if I sound neurotic openly sharing all of my symptoms? What if I have to live with this pain for the rest of my life? What if I lose my job because the pain is impacting me at work? What if I’m told it is all in my head and no one believes in me?

My nephew has doctored at Mayo for years because of a rare disease he has and they have been so very wonderful. My head tells me to trust these professionals and the process. My head tells me that whatever I have isn’t life threatening and to stop feeling sorry for myself.

I guess I’m just venting- exhaling all my fears and nervousness then struggling to deeply inhale self-courage, the confidence to articulate what I am experiencing and the belief that someone will hear me and seek answers on my behalf. After all, the unknown might very well be the most frightening experience in all of this.

If you are still reading this, whoever you are, thanks for listening. I just closed my eyes and sent good wishes to you on your personal journey. You are not alone.

Blessings…