Response to Zizzle about LDN & a update

mzh · Post by **mzh** » Sat Mar 29, 2014 7:52 am

Praying for you Joe. Here's to getting your meds adjusted properly and quickly.

JFR · Post by **JFR** » Sat Mar 29, 2014 11:08 am

Hi Joe,

I am in the midst of a move to another apartment in Brattleboro, which, along with 2 days without any internet service that just got restored, doesn't leave me much time to respond, but I think about you a lot and wish things weren't so hard for you.

love,
jean

Pat · Post by **Pat** » Sat Mar 29, 2014 12:15 pm

Praying for you, Joe. I really feel for you. Hang in there!!!

Pat

ant · Post by **ant** » Sun Mar 30, 2014 9:06 am

Dear Joe,

Just read these posts. Thinking of you and good luck with this next stage of the long journey......

The key to coping with any chronic illness lies in acceptance of what is and allowing ourselves to adjust

So true and well put. As others have said, you have great strength of mind and character.

Best wishes, Ant

Jeanemcl · Post by **Jeanemcl** » Mon Mar 31, 2014 9:16 am

Joe,
I enjoy your posts and love your spirit. Thinking of you and prayers coming your way.
Jean

Zizzle · Post by **Zizzle** » Mon Mar 31, 2014 9:37 pm

Well, Joe,
Our conditions seem to be more related than I suspected. They can overlap! The Johns Hopkins Myositis Center just published this in their most recent newsletter:

Myositis and Myasthenia Gravis Case Study

Objective: Myositis and myasthenia gravis (MG) are both autoimmune disorders presenting with muscle weakness. Rarely, they occur simultaneously in the same patient. Since the management of myasthenia gravis differs from that of myositis, it is important to recognize when patients have both diseases. We reviewed the cases of 6 patients with both myositis and MG to identify clinical features that suggest the possibility of co-existing MG in myositis patients.

Methods: We identified 6 patients with dermatomyositis or polymyositis and MG. We reviewed their medical records to assess their clinical presentations, laboratory findings, and electrophysiological features.

Results: All 6 patients had definite dermatomyositis or polymyositis by the criteria of Bohan and Peter as well as electrophysiologic and/or serologic confirmation of MG. Among overlap patients, 5/6 (83%) had bulbar weakness, 2/6 (33%) had ptosis, and 1/6 (17%) had diplopia. Fatigable weakness was noted by 5/6 (83%) patients. Treatment with pyridostigmine improved symptoms in 5/6 (83%) patients. High-dose steroids were associated with worsening weakness in 2/6 (33%) patients.

Conclusions: Prominent bulbar symptoms, ptosis, diplopia, and fatigable weakness should suggest the possibility of MG in patients with myositis. A suspicion of MG may be confirmed through appropriate electrophysiologic and laboratory testing. In those with myositis–MG overlap, high-dose steroids may exacerbate symptoms and pyridostigmine may play an important therapeutic role.

Kari · Post by **Kari** » Tue Apr 01, 2014 10:17 am

Hi Joe,

It is so good to see a post from you, even though your news are not great. I admire your spirit, and your seeming ability to focus on the silver linings. Couldn't agree more about how important attitude is in dealing with chronic conditions. Wishing you all the best.

:bigbighug:

Love,
Kari