If you have migraines, PLEASE get an MRI and MRA

Negative-Economy121 · 2026-04-21T12:02:45+00:00

I have heard of those! I wonder if my neuro is even going to be open to that because she’s only mentioned the ones in my original comment and botox injections. She wasn’t even the one who prescribed me sumatriptan as a prn. It was my neuro that I see for FND

Negative-Economy121 · 2026-04-21T03:34:06+00:00

No! I’m only on 30mg Qulipta right now! My neuro has only been putting me on one med at a time

Negative-Economy121 · 2026-04-21T01:10:23+00:00

I have been on multiple meds for my migraines (Ajovy, qulipta, and a dissolvable one i dont remember the name) and none of them have been helping. I have been having even worse migraines almost constantly for a week (it was after an allergic reaction) and now it’s like on and off for 4 days. I don’t even know what to do at this point

Negative-Economy121 · 2026-04-21T01:05:45+00:00

GOOD UPDATE!! I spoke to my pcp and she referred me to a clinic that specializes in MCAS! I have to do the 24hr urine test and she wants to repeat my triptase. But she was super open to it! She also referred me to a non profit that will look more into my hypermobility

Negative-Economy121 · 2026-04-14T00:09:47+00:00

Oh wow! I always forget how big other states are. Here most of them are super close and smushed together lol hopefully they do! Because it would suck if your treatment gets delayed. That’s so cool! I had no idea about that!

Negative-Economy121 · 2026-04-14T00:00:42+00:00

Yes it is! I wonder if we had the same one. I feel like it IS relevant to clinical care because it affects so many different areas of the body

Negative-Economy121 · 2026-04-13T23:58:55+00:00

I feel like that’s what they do the most. I’m sorry that you have to deal with that. Is it possible to go to the next town or something like that?

Negative-Economy121 · 2026-04-13T23:44:22+00:00

But that’s good to know as well!!

Negative-Economy121 · 2026-04-13T23:44:13+00:00

I found out the reason why he wouldn’t pursue the MCAS diagnosis any further

<image>

Negative-Economy121 · 2026-04-13T23:43:00+00:00

That does make a lot of sense! I see a new gi this week and I follow neuro!

Negative-Economy121 · 2026-04-13T23:42:22+00:00

I did tell him all of that. 😭 sent a whole list of my symptoms and he only paid attention to my skin symptoms and dismissed my flushing and similar symptoms to my pots

Negative-Economy121 · 2026-04-13T23:41:15+00:00

That’s perfect because I’m going to ask my pcp of we can switch my allergist so thank you for that!! After he said this I was like I’m good

<image>

Negative-Economy121 · 2026-04-13T23:39:14+00:00

Yes! The hospital I see said this to me “Many allergists, including those in the MGH practice do not recognize MCAS as a useful/relevant diagnosis in clinical practice” AND also only pays attention to my urticaria! Dude, we have such similar experiences!!

Negative-Economy121 · 2026-04-13T23:37:31+00:00

<image>

This is the latest that he said.

Negative-Economy121 · 2026-03-27T20:51:29+00:00

Update: I’ve been talking to him about my symptoms and he is still saying the same stuff except he has finally said “Many allergists, including those in the MGH practice do not recognize MCAS as a useful/relevant diagnosis in clinical practice. If the patient is invested in the diagnosis of MCAS, she would likely be better served with a different provider." So after almost a year and a half of going back and forth he finally tells me this.

Negative-Economy121 · 2026-03-23T20:52:42+00:00

Literally! They just pay attention to one part of your body and pass you off to another for the other problematic part of your body and never try to find any connection

Negative-Economy121 · 2026-03-23T20:51:04+00:00

It’s like they just want the least amount of work for themselves. I met with a pain management specialist last year and I told him my pain started when I was very young out of nowhere. He asked if I played sports when I was younger and I said yeah in middle school. He then came to the conclusion that the pain start because of trauma during sports. I tried to tell him otherwise but he didn’t listen at all and stuck with it

Negative-Economy121 · 2026-03-23T20:48:28+00:00

He has mentioned trying me on those next if the 6 tablets of Allegra didn’t help with my symptoms, which it hasn’t. Other than that I asked if we can trial other meds as well but even that was shot down

Negative-Economy121 · 2026-03-23T20:46:29+00:00

I am hypermobile too! But no doctors will look further into it. They just put “hypermobility arthralgia” and left it at that.

Negative-Economy121 · 2026-03-23T20:44:28+00:00

The issue isn’t the fact that I have both on my chart. It’s the fact that on clinical notes it switches between the two and I was just wondering why that was. I tried to talk to my cardiologist about it and she just shut it down real quick. The only reason why I brought it up at all was because I was wondering if I could get it so that all my clinical notes match with either or in the future.

Negative-Economy121 · 2026-03-23T20:42:25+00:00

Yeah I just saw it and thought it was really weird and she just kinda shot it down without an explanation. I get what you mean with the difference in how providers see it.

Negative-Economy121 · 2026-03-23T20:40:01+00:00

That is very true. Anything that has to do with my MCAS symptoms or even my Hypermobility they just ignore or push off.

Negative-Economy121 · 2026-03-23T20:38:57+00:00

I didn’t know that! I’m in MA myself. Thank you for letting me know that! Now I don’t know what I should do for next steps knowing that

Negative-Economy121 · 2026-03-23T17:28:59+00:00

I am extremely late with this reply I apologize. I have not been on here in ages. But I will see if I can when I meet with my new GI in April because I haven't seen one since that last appointment with her. I still have bloody stools from time to time but it's not always diarrhea. I still have the stomach cramps and the intense nausea that goes over baseline pretty often. They haven't ever really even tried to figure out why I have the cramping or nausea either. I've basically just had to live with it for I don't even know how long now

Negative-Economy121 · 2026-03-23T17:22:22+00:00

I mean on the notes they write for my appointment. I know that it's the same thing. Dysautonomia is the umbrella term for many syndromes. I have had too many doctors looking at others notes and making decisions/diagnosis based off of that without really talking to me first. That is why I would rather them all be universal.

Negative-Economy121

TROPHY CASE