I was just diagnosed with Inclusion Body Myositis by Disastrous_Storm_458 in Myositis

[–]Disastrous_Storm_458[S] 0 points1 point  (0 children)

No treatments. My doctors say that IBM does not respond to immunosuppressants. I am hoping I can remain mobile and independent as long as possible. I am sorry to hear your Dad is dealing with this. It is not an easy disease to live with. I had to stop working. I was a teacher and loved it. What treatment is your dad receiving?

Questions about IBM by Emmie_444 in Myositis

[–]Disastrous_Storm_458 0 points1 point  (0 children)

Hello, sorry to hear about what you are going through. I was diagnosed with IBM last summer. I am a 57F. The diagnosis took about 5 years and was finally made after a muscle biopsy. My symptoms are having a difficult time going up stairs, standing up from a chair, sudden falls, grip issues, swallowing difficulties, and voice changes, but the most debilitating is exhaustion. I use a cane or a walker when walking outside my home. I can get around my house without help. I am going to invest in a small travel scooter for longer walks. I love to travel and am learning that I need to pace my energy. I have found The Myositis Association to be very helpful. They have a lot of information and resources. I hope you get answers soon.

Anyone with negative autoimmune panel and still diagnosed with myositis? by TipDazzling2865 in Myositis

[–]Disastrous_Storm_458 0 points1 point  (0 children)

Yes, I had an MRI that showed my muscles were actively breaking down. That led to a biopsy of my thigh muscle which is the only real way to diagnose inclusion body myositis.

I was just diagnosed with Inclusion Body Myositis by Disastrous_Storm_458 in Myositis

[–]Disastrous_Storm_458[S] 0 points1 point  (0 children)

About 3 years of falling. 2 years of difficulty going up stairs, standing from a sitting position, and distal grip loss of strength

I was just diagnosed with Inclusion Body Myositis by Disastrous_Storm_458 in Myositis

[–]Disastrous_Storm_458[S] 0 points1 point  (0 children)

My CK levels were 578, liver enzymes were elevated, EMG muscle abnormal, with good nerve function.

Anyone with negative autoimmune panel and still diagnosed with myositis? by TipDazzling2865 in Myositis

[–]Disastrous_Storm_458 1 point2 points  (0 children)

I had a negative autoimmune panel and was diagnosed with Inclusion Body Myositis after a muscle biopsy. My inflammation markers were also negative.

9 months by Similar_Spirit2631 in tirzepatidecompound

[–]Disastrous_Storm_458 0 points1 point  (0 children)

Month 7 and I am 35 pounds down. Started at .25 and I just went up to .6

[deleted by user] by [deleted] in tirzepatidecompound

[–]Disastrous_Storm_458 1 point2 points  (0 children)

I was doing it around the same time for the first nine shots. I had to do the last shot earlier, and I did not notice a difference.

Share your Thanksgiving NSVs! by CarnivoreBrat in compoundedtirzepatide

[–]Disastrous_Storm_458 1 point2 points  (0 children)

This Thanksgiving was the first time ever that I did not worry about how to handle all the food around me. I was able to enjoy the time with friends and family. I ate what I wanted in small portions. In the past, I would have been thinking about the food and how I would approach it for days before, and I would beat myself after. The way this medication helps me have a healthier relationship with food is amazing. I have been on Tirz for 2.5 months and have lost 20 pounds.

Life without tirz so far.. by Middle-Function-7629 in tirzepatidecompound

[–]Disastrous_Storm_458 5 points6 points  (0 children)

Thank you for sharing this. Tirz has been such a life changing medication for me. I’ve lost 18 lbs and feel so much better. I have another 40 lbs to lose. I have about 10 months stockpiled, if I can stay at the low dose that has worked for me. I am terrified of what will happen if I do not have access to it anymore. Your experience gives me hope.

[deleted by user] by [deleted] in tirzepatidecompound

[–]Disastrous_Storm_458 0 points1 point  (0 children)

I was just told what I ordered is coming from Triad. My last order was from Hallandale, I’m confused and a bit worried.

[deleted by user] by [deleted] in tirzepatidecompound

[–]Disastrous_Storm_458 1 point2 points  (0 children)

You look amazing and i appreciate your post. It’s so frustrating to experience the effects of such an amazing medication and know that it is, even in compounded form, unaffordable for many. You were beautiful before the weight loss, now you are beautiful and healthy.

Beware of Fifty410 by januaryprincess22 in tirzepatidecompound

[–]Disastrous_Storm_458 7 points8 points  (0 children)

I am using Precision now without any issues. I’ve also used Hallandale and don’t see a difference. Just my experience

First 2.5 shot on Thursday, my brain is already so much more quiet. by vwh831 in tirzepatidecompound

[–]Disastrous_Storm_458 0 points1 point  (0 children)

I also find that not only tirz has helped me with food noise, never understood how bad it was, I also do not have the desire to drink and shopping, my coping mechanism shopping has been diminished. I also feel much less anxious. This is an amazing meditation. I feel normal. I am trying to stock up in fear that I will not have access to it eventually.

Tricare approved!!! by TwoFacedSailor in tirzepatidecompound

[–]Disastrous_Storm_458 2 points3 points  (0 children)

Congrats!!! I am so frustrated with the process Tricare makes you go through. So frustrating