New to this group

Hello @nmenonk2022, Welcome to Connect. Getting an official diagnosis must have been a very good feeling. I'm glad it gave you some closure knowing the diagnosis. It might be even more comforting knowing you are not alone.

Do you mind sharing what you were diagnosed with so that we can connect you with other members sharing the same diagnosis?

Hi John
I was diagnosed with Inclusive Body Myositis. This decease affects all the long muscles in one’s body.
I just went through my OT at Mayo and Dr Shah indicated that there are trials with monoclonal therapy on-going and that the results may be available next year for FDA type approval.
It is interesting to note that this type of therapy is available in Europe at this time with reservations about the effect.

Can you tell us what were some of your significant symptoms? I would like to compare it to my non-classic Small Fiber Neuropathy.

I had the drop leg syndrome and knee buckling at random times. I lost almost all the muscle definition on my legs and arms as well. I was privy of sound balance when walking and difficulty to get up from normal (21 inch) chairs

I still have issue with balance, standing up from a normal chair. It is difficult to lift my arms above my shoulder level.

What does "privy of sound balance" mean to you? I'm having trouble with that one. Am I to understand that your arms are effected as well?

marcia115---I am new to this group. I had a tooth pulled, and have had nothing but problems, I have had
a headache for 4 weeks, sorta like a tention one. they took blood and my sedimentation is high so they
put me on prednisone, I have to have another blood test tomorrow.
Has anyone had this problem?

@nmenonk2022 There is another discussion on inclusion body myositis that you may want to check out.
https://connect.mayoclinic.org/discussion/inclusion-body-myositis/
Have you been getting any ongoing physical therapy to help improve your balance and standing issues?

@marcia115 I understand that you’ve had a bad headache for 4 weeks. Did it start just after you had your tooth pulled? Have you seen your primary care doctor to check for infection? And did the dentist recheck the area in your mouth?
You have a very general question and this group is for those with an autoimmune condition so you may want to ask your question in the Just Want to Talk Support Group. Link below. I’m sure that you will get some good answers!
https://connect.mayoclinic.org/group/other/
What self-care was suggested after the tooth was pulled?

This may be an infection. Was your tooth pulled because of pain? You may still havre some infection there and usually are given antibiotics if this is the case.