Kristie Marie
@mrsmidgemaisel.bsky.social
We both learned the hard way when our doctors should have told us when they diagnosed us what to avoid. An ER doctor put me in Crisis when I had a blood clot in my jugular vein…along with sepsis from it. So that was fun!
January 23, 2025 at 4:51 AM
We both learned the hard way when our doctors should have told us when they diagnosed us what to avoid. An ER doctor put me in Crisis when I had a blood clot in my jugular vein…along with sepsis from it. So that was fun!
I have Crohn’s disease and when I was first diagnosed and didn’t know I was getting IV magnesium and it kicked my ass! I walked in the ER and let with a walker because I was so weak from the magnesium…
January 23, 2025 at 4:24 AM
I have Crohn’s disease and when I was first diagnosed and didn’t know I was getting IV magnesium and it kicked my ass! I walked in the ER and let with a walker because I was so weak from the magnesium…
My mother is adopted also and my doctor dx as Congenital MG. I’m the only one in my family with any autoimmune diseases. They say it is not autoimmune but it turns into Generalized MG.
January 23, 2025 at 12:51 AM
My mother is adopted also and my doctor dx as Congenital MG. I’m the only one in my family with any autoimmune diseases. They say it is not autoimmune but it turns into Generalized MG.
Congenital MG?
January 22, 2025 at 11:05 PM
Congenital MG?
I can’t tell anymore what is what. I have Crohn’s, Lupus, MG, Ankylosing Spondylitis, Fibromyalgia…I’m always in pain and can’t tell what is what…
January 22, 2025 at 11:04 PM
I can’t tell anymore what is what. I have Crohn’s, Lupus, MG, Ankylosing Spondylitis, Fibromyalgia…I’m always in pain and can’t tell what is what…
Honestly, if the 2 doses of IVIG didn’t work…likelihood of the 3rd will not. I’d just go straight to Plex instead of wasting the time.
January 22, 2025 at 10:59 PM
Honestly, if the 2 doses of IVIG didn’t work…likelihood of the 3rd will not. I’d just go straight to Plex instead of wasting the time.
I hope everything works out well for you and the new doctor in Washington.
January 22, 2025 at 10:58 PM
I hope everything works out well for you and the new doctor in Washington.
I hate idiots like that. So, as you probably know the best ones to go to are neuromuscular specialists vs a neurologist. I had a neuro say I didn’t have MG but it fit me to a T. I asked for Mestinon to try and he noticed the improvement and sent me to a neuromuscular doctor. I’m Sero.
January 22, 2025 at 10:44 PM
I hate idiots like that. So, as you probably know the best ones to go to are neuromuscular specialists vs a neurologist. I had a neuro say I didn’t have MG but it fit me to a T. I asked for Mestinon to try and he noticed the improvement and sent me to a neuromuscular doctor. I’m Sero.
Willing to listen to you? I’m taking it as you’re Seronegative?
January 22, 2025 at 10:28 PM
Willing to listen to you? I’m taking it as you’re Seronegative?
I’m going to miss 2 IVIG infusions because of the stupid PA needing clinical crap and my appt is 2/19. They can’t get me in sooner. Probably end up in the ICU. Insurance is a joke…she not maintaining well if she’s having that issue and only on that.
January 22, 2025 at 10:28 PM
I’m going to miss 2 IVIG infusions because of the stupid PA needing clinical crap and my appt is 2/19. They can’t get me in sooner. Probably end up in the ICU. Insurance is a joke…she not maintaining well if she’s having that issue and only on that.
Is this your first infusion?
January 22, 2025 at 10:22 PM
Is this your first infusion?
Just take breaks. Don’t over exert yourself. You’ll pay for it.
January 22, 2025 at 10:16 PM
Just take breaks. Don’t over exert yourself. You’ll pay for it.
IVIG makes me feel like utter crap for days. I haven’t moved from the couch but to take my dog out and go to the bathroom. Just don’t have the energy. Feel…sluggish…my vision is blurry and I took my Mestinon ER at 11…shouldn’t be this blurry.
January 22, 2025 at 10:15 PM
IVIG makes me feel like utter crap for days. I haven’t moved from the couch but to take my dog out and go to the bathroom. Just don’t have the energy. Feel…sluggish…my vision is blurry and I took my Mestinon ER at 11…shouldn’t be this blurry.
Good. I hope you stay ocular. Some start ocular and then progress to Generalized MG. I did.
January 22, 2025 at 10:11 PM
Good. I hope you stay ocular. Some start ocular and then progress to Generalized MG. I did.
It’s a load of shit “you’ll be fine”!
January 22, 2025 at 10:10 PM
It’s a load of shit “you’ll be fine”!
Tell me about it. I come downstairs and go back to sleep every day. Slurring speech, double vision…Frankenstein walk…fun life we live!
January 22, 2025 at 10:09 PM
Tell me about it. I come downstairs and go back to sleep every day. Slurring speech, double vision…Frankenstein walk…fun life we live!
Tell me about it. I had to get a port. Mine is from bad veins from IV drugs and having Crohn’s disease also. I’m glad I have a port now because I get IVIG every 3 weeks and my veins blow with an IV within an hour and I don’t want to have to go through an hour or so trying to find a vein every time.
January 22, 2025 at 10:07 PM
Tell me about it. I had to get a port. Mine is from bad veins from IV drugs and having Crohn’s disease also. I’m glad I have a port now because I get IVIG every 3 weeks and my veins blow with an IV within an hour and I don’t want to have to go through an hour or so trying to find a vein every time.
Hi. Do you still have questions?
January 22, 2025 at 10:05 PM
Hi. Do you still have questions?
What infusions? I could possibly help depending on what it is.
January 22, 2025 at 10:00 PM
What infusions? I could possibly help depending on what it is.
I’m sorry for your loss. I have MG and know the complications of the disease. She was a little cutie.
January 22, 2025 at 9:59 PM
I’m sorry for your loss. I have MG and know the complications of the disease. She was a little cutie.
If you’re on any IV drugs for MG or Cellcept…you can not donate.
January 22, 2025 at 9:58 PM
If you’re on any IV drugs for MG or Cellcept…you can not donate.
Just because you do not have the antibodies in your blood does not mean you do not have MG.
January 22, 2025 at 9:56 PM
Just because you do not have the antibodies in your blood does not mean you do not have MG.
Is she on Mestinon?
January 22, 2025 at 9:56 PM
Is she on Mestinon?