See above. I responded to steroids seemingly at first but then they seemed to stop working. Do I still have hope that anything else would work to actually repair the nerves? We think it’s autoimmune mainly due to onset after a flulike virus, autoimmune hair loss,relapse remitting, young female and ruling everything else out.
Does anyone diagnosed with MALS have pain closer to the belly button instead of higher up? Did anyone with that type of pain get better after surgery from that pain?
I’m a 2nd year PhD student in BME 28F. My particular advisor has not been great but I love my program, research and lab mates.
The real problem has been my declining health. I have been chronically ill for 18 years but the last 4 have been the worse ever and I feel I am getting worse. I started my PhD because I felt I’ve always been sick and I’ll never get better but now I feel I can’t fit either my sickness or research around each other. I work with cells in month long experiments and I can’t really afford to take off if I have an important doctors appointment I waited months for or bad flare or even vomiting but I kind of have to. I loved cell work in the past but I’m getting worse and I’m needing more and more doctors appointments and specialists (neglected disease) and procedures to the point I’m going to need to travel and even spend weeks at a time elsewhere. None of this is conducive to cell work or even wet lab work.
I’m afraid I’ll have to go on medical leave but I don’t know for how long or that I will ever get better. It would be much easier if I could work on computational work mostly or purely so I could continue to progress and take the time needed to hopefully get the best medical help. I could even work during infusions, waiting for doctors, after surgery or even during a somewhat painful flare . (Yes, I know I’d still need to be there when I’m not at the doctors and need to learn enough first before being able to do this)
I don’t know if this will be possible since I am a second year, my lab doesn’t do any computational work and my PI is not very flexible. But I need to try. Otherwise, I’ll just go on medical leave and be sad the whole time.
I want to try reaching out to another PI who knows more computationally but due to my advisors inflexibility to consider other projects and the country wide lack of funding it’s not looking good. Any tips? Has anyone else had to do something like this before?
How screwed am i? Also, if I go on medical leave I lose all support including health insurance and may not be invited back into the program depending on funding. But I need to do more for my health otherwise I have no hope of a future.
Anyone get really itchy at night? It’s been happening to me a lot lately. It’s been more painful during the day and itchy in the evening and night.
Hi For a long time (13 years) I was told I just have gastroporesis which is likely related to my small fiber neuropathy and POTS. I did an ultrasound and CT tests and my doctor now thinks I could have MALS. I was sent to a vascular compression specialist, he repeated the tests and also said I have MALS. However, he says the only way to know for sure that the MALS is causing my symptoms is surgery. He says a celiac plexus block may help and if it does it’s likely the surgery will help but even if it doesn’t the surgery may help. I really want to not be in stomach pain because I have enough other diseases already on my plate but I don’t want to go through an extra surgery just to get no relief. I was wondering if people thought any of these symptoms are MALS related based on their experiences with their own symptoms.
2.About once a week I will wake up in the middle of the night with severe 10/10 pain and feel like I’m going to vomit (most of the time I don’t, sometimes I do). Most of the time I just end up belching a ton for an hour and it eventually somewhat calms down.
The pain is around my whole stomach and belly button area and feels sharply and achy.
I often feel really gassy and have to belch and burp a TON. Sometimes it just feels like there’s a bunch of pressure building up and I just need to get the belch out but it won’t come. Once it comes I usually feel better for a few seconds.
Beside stomach pain, I also feel naseaus, fart a lot and have some reflux. But I haven’t lost weight.
Sometimes feel intense pain before needing to have a bowel movement.
I do not respond to normal GI meds or anti gas pills or breathing exercises or any of the billion things I’ve tried.
However , I don’t feel better when standing of any sort of position that they say you should feel better.
I also get random headaches, difficulty breathing (especially when feeling belchy) and tachycardia especially up the stairs but could be related to my other diseases.
What does anyone think? Also does anyone else have small fiber neuropathy? Is there any relation to this and MALs?
I would really appreciate insight from other patients preferably who had the surgery and got better.