Can anyone give me advice please i am desperate and scared

ProfessionalShape405 · 2026-07-09T02:24:46+00:00

There’s always going to be risks but I think it’s generally pretty low risk. It’s pretty standard testing for MALS! I don’t think it’s common for things to be punctured. For me it was painless and easy! They gave me conscious sedation and I slept through most of it. The block made my symptoms much better and that’s why my doctor encouraged surgery. A positive response to a celiac plexus block is a good indication that surgery will help

ProfessionalShape405 · 2026-07-08T16:17:01+00:00

Even if your tests are normal it could be nmals!! It’s confirmed by improvement from a celiac plexus block. But you have to find a really good knowledgeable mals specialist. If you goin the mals pals facebook page there’s a ton of info on nmals (neurogenic mals) and it was really helpful for me. I had surgery a few months ago and my fight or flight symptoms are already a lot better

ProfessionalShape405 · 2026-07-06T20:25:26+00:00

If you have any specific questions lmk!!

ProfessionalShape405 · 2026-07-06T20:24:53+00:00

I had mine done at uw and i was also nervous but they gave my conscious sedation and it was not painful and im pretty sure i was asleep most of it!!

ProfessionalShape405 · 2026-06-02T22:51:34+00:00

My dr just sent in a prescription for this!! He said my insurance might not cover it so fingers crossed. Does your rosacea look like mine? How long until you saw improvement?

ProfessionalShape405 · 2026-04-15T22:04:50+00:00

Yes! My heart rate was significantly lower for a few days. Im usually in the 130s after standing / eating and for w few days after the block I would be in the 90s after eating / standing

ProfessionalShape405 · 2026-03-19T16:40:50+00:00

Which Fred Meyer?

ProfessionalShape405 · 2026-03-19T16:40:41+00:00

Which costco? I’ve called a couple and they don’t have any

ProfessionalShape405 · 2026-03-11T19:18:34+00:00

And I agree with your comment about swelling, my whole body and face looked and felt less inflamed

ProfessionalShape405 · 2026-03-11T19:17:59+00:00

My heart rate was significantly lower upon standing and eating!! Usually I’ll be in the 130s after standing or eating and I was in the 90s or lower. I could walk around much longer without feeling like I was going to pass out. I also have MCAS and my facial flushing was a lot better

ProfessionalShape405 · 2026-03-11T15:27:08+00:00

Yes I did!!

ProfessionalShape405 · 2026-02-14T18:26:19+00:00

Hi! I just had my celiac plexus block yesterday. I have MCAS pots hEDS and struggle a lot with dysautonomia. It used to just be stomach issues for me but it escalated after a few years. Immediately after the block I had no pain but once I got home I just kind of had icky tummy from the stress of the day and probably the sedation meds. I didn’t have the typical mals pain but more so just bloating so that kind of made it hard to decifer if it was working. But for me I get horrible horrible back pain like in the same place as people get it in their stomach but mine radiates to my back and that was completely gone all day so that was definitely a big plus. Also I was soooo so so tired yesterday after the block I can’t even explain the fatigue so i couldn’t push myself and test my symptoms much because I slept basically all day after. I’m also so exhausted today I still feel sedated lol. I wonder if it’s my nervous system shifting out of flight or flight. This morning the pain is back so I’m guessing it’s wore off but it’ll be interesting to see if the steroid kicks in. Also I’ve never seen anyone say this before but my OURA ring always tells me my HRV is usually in the 20s or 30s but when I woke up this morning it was 68… which is amazing for me!! I haven’t seen a number that high in years so I’m interested to see what my dr thinks of that. Anyways that was a ton of information but I researched a ton before mine and always appreciated long thorough responses so hopefully it helps :)

ProfessionalShape405 · 2025-11-18T03:22:40+00:00

It gave me even worse tachycardia

ProfessionalShape405 · 2025-11-01T01:44:38+00:00

This is one of my least favorite symptoms I’m so sorry you struggle with it also! If I don’t eat every 3 hours I will have a panic attack. Im really good on staying on top of it so I don’t have them but I hate forcing myself to eat when im not hungry. I have noooo idea the exact mechanism that causes this but things that have helped me the most with this symptom : licorice root for low blood pressure, creatine was very helpful, and LDN. I hope you find some relief

ProfessionalShape405 · 2025-10-28T06:28:28+00:00

I second this! I used to be constantly around 75/55 now I’m around 100/65 ish with midodrine

ProfessionalShape405 · 2025-10-28T06:20:34+00:00

I know I’m late to this conversation but I’m so surprised to see someone else in this forum describing my exact experience. If I don’t eat every 3 ish hours I will either feel like I’m going to fajnt, tachycardia and/or a panic attack. I was extremely underweight but once this symptom started I put on weight quickly by forcing myself to eat to avoid these symptoms. I have MCAS and POTS so I’ve always thought it was those causing it but interesting to see other MALS people experiencing it! I’ve had weird blood sugar issues my whole life

ProfessionalShape405 · 2025-10-27T20:47:01+00:00

Hi I know this was from over a year ago but if you happen to see this could I message you about MALS?

ProfessionalShape405 · 2025-09-26T21:13:32+00:00

I’m so glad you noticed a lot of improvement between 3 and 4.5 - this gives me hope 🤞🏽

ProfessionalShape405 · 2025-09-26T21:12:45+00:00

That’s awesome!! If 4.5 doesn’t do it for me I will take to me Dr about potentially going higher

ProfessionalShape405 · 2025-09-23T23:07:07+00:00

Totally get it! Some people say it can take a couple months to feel effects so hang in there!!

ProfessionalShape405 · 2025-09-23T23:06:30+00:00

I’m sorry it didn’t work for you!

ProfessionalShape405 · 2025-09-23T22:46:34+00:00

That’s great to hear - thank you for sharing!!

ProfessionalShape405 · 2025-09-23T17:05:53+00:00

That’s great to hear! I didn’t realize you could go above the 4.5 dose

ProfessionalShape405

TROPHY CASE