SpinachHands
Senior Member
- Messages
- 197
- Location
- United Kingdom
My partner (M)'s health has continued to worsen and we don't know why or what to do about it. Their me/CFS/long COVID had been improving with rest and time, they were getting more energy, being able to sit up, use their phone. But something else has been worsening still simultaneously, and now they're losing all that again, on top of increasing horrendous symptoms that they didn't have a year ago when their ME was at its worst.
We've only had diagnoses of dysautonomia and MCAS to go on, but they've had bad reactions to nearly every MCAS medicine, and those they could take and were helping, they eventually started having bad reactions to, and the benefit hasn't been enough to stop whatevers wrong, so now they've had to stop all their meds and supplements. Since late December the only things they've been able to consume is water, a nutritional replacement drink called Fresubin, and blended bananas and milk. Even those still make them feel bad, they're just the best tolerated.
The reaction they have to meds, food, liquid is: intense head pressure, severe brainfog, a surge of irritability/rage/anger, a "fizzing" feeling all throughout the body, raised temperature, stomach churning and pain, strained breathing, sometimes paralysis (they will go fully limp, even mid-sentence, and be unable to move for several minutes to an hour, but be fully conscious).
Ongoing besides the immediate reactions to things is still a constant pressure in their head, sinus pain, severe brain fog, their memory and ability to think/hold concentration is worsening severely, general pain is worsening like muscle and joint pain, their stomach is near constantly churning and gurgling, they get bloating and painful burping, muscle weakness, sleep disturbances. Their skin seems to rapidly be becoming more elastic, like it's literally bunching and piling up but their weight hasn't changed. Big blood pressure fluctuations, like sometimes it's too high, others too low. Bouts of dizziness and feeling faint, lightheaded. Basically they're in hell 24/7 and it's getting worse every day.
In terms of what we've tried, after the hospital in Jan/Feb we spoke to a gastro who did help identify that M probably has EDS (hypermobility) which can cause gut motility, but said they'd need more hospital investigations, which aren't happening until next month. Spoke to a dysautonomia/pots specialist who has asked for some blood tests that I'm trying to organise, but he thinks a different doctor is needed for their MCAS/stomach issues, and he'll likely only be able to help with the BP stuff. I spoke to an EDS specialist rheumatologist who said he couldn't do anything unless they did thousands of pounds worth of tests and then came to see him in person in London, which we have no way to believe would help. I'm hoping to get an appointment with an infectious disease specialist at the end of this week as she seems to have some experience with immune issues and mast cell issues. The GP did some basic bloods, their IGE has been super high every time we tested but she said it's probably just because they have asthma (even though mina hasn't had to use their inhaler in months). Their ALP was also consistently high so a liver/abdominal ultrasound has been booked at the hospital for next month, but she doesn't think it's much of anything.
Basically the issue is, we've been operating as though this is MCAS, but it's less common to have MCAS this severe and it to present without rashes, swelling or anaphylaxis. It's also weird to not only not be helped enough by MCAS meds, but to also have MCAS reactions to them all. They have tried 11 different antihistamines (H1 and H2), and all have immediately or eventually made their symptoms worse. They've come off ketotifen, sodium cromoglicate and Montelukast, all of which they had tapered up to full dose, and then back down. So we figure either this is an insanely unlucky rare case of MCAS, or there's something else going on that we and every doctor over the past year has missed. I've been researching autoimmune conditions, inflammatory conditions, and I just, I really don't fucking know. I don't even know what kind of doctor we need, every specialist has just been focused on their own thing, but we need someone putting together all of the pieces. And so far, it's literally just been me and M doing that.
Some out of the box stuff I've been looking at is:
Graves' Disease, IGG4 Related Disease, Churg-Strauss Syndrome, Undifferentiated Connective Tissue Disease, Amyloidosis, Rheumatoid Arthritis, Liver Cirrhosis, Biliary Cholestasis.
All have reasons for/against, and I need to try and get some blood tests, and if anything comes up I need to then find a doctor to look at the tests and diagnose, but idek if I'm pointing in the right direction!
I've lost track of the number of doctors I've spoken to, and still we don't know what's wrong with M, why it's getting worse, we don't have a treatment plan, and we don't have anyone providing ongoing medical care trying to help. So it's all up to me, and I'm failing. If anyone has any ideas or directions to look in, I would appreciate it.
We've only had diagnoses of dysautonomia and MCAS to go on, but they've had bad reactions to nearly every MCAS medicine, and those they could take and were helping, they eventually started having bad reactions to, and the benefit hasn't been enough to stop whatevers wrong, so now they've had to stop all their meds and supplements. Since late December the only things they've been able to consume is water, a nutritional replacement drink called Fresubin, and blended bananas and milk. Even those still make them feel bad, they're just the best tolerated.
The reaction they have to meds, food, liquid is: intense head pressure, severe brainfog, a surge of irritability/rage/anger, a "fizzing" feeling all throughout the body, raised temperature, stomach churning and pain, strained breathing, sometimes paralysis (they will go fully limp, even mid-sentence, and be unable to move for several minutes to an hour, but be fully conscious).
Ongoing besides the immediate reactions to things is still a constant pressure in their head, sinus pain, severe brain fog, their memory and ability to think/hold concentration is worsening severely, general pain is worsening like muscle and joint pain, their stomach is near constantly churning and gurgling, they get bloating and painful burping, muscle weakness, sleep disturbances. Their skin seems to rapidly be becoming more elastic, like it's literally bunching and piling up but their weight hasn't changed. Big blood pressure fluctuations, like sometimes it's too high, others too low. Bouts of dizziness and feeling faint, lightheaded. Basically they're in hell 24/7 and it's getting worse every day.
In terms of what we've tried, after the hospital in Jan/Feb we spoke to a gastro who did help identify that M probably has EDS (hypermobility) which can cause gut motility, but said they'd need more hospital investigations, which aren't happening until next month. Spoke to a dysautonomia/pots specialist who has asked for some blood tests that I'm trying to organise, but he thinks a different doctor is needed for their MCAS/stomach issues, and he'll likely only be able to help with the BP stuff. I spoke to an EDS specialist rheumatologist who said he couldn't do anything unless they did thousands of pounds worth of tests and then came to see him in person in London, which we have no way to believe would help. I'm hoping to get an appointment with an infectious disease specialist at the end of this week as she seems to have some experience with immune issues and mast cell issues. The GP did some basic bloods, their IGE has been super high every time we tested but she said it's probably just because they have asthma (even though mina hasn't had to use their inhaler in months). Their ALP was also consistently high so a liver/abdominal ultrasound has been booked at the hospital for next month, but she doesn't think it's much of anything.
Basically the issue is, we've been operating as though this is MCAS, but it's less common to have MCAS this severe and it to present without rashes, swelling or anaphylaxis. It's also weird to not only not be helped enough by MCAS meds, but to also have MCAS reactions to them all. They have tried 11 different antihistamines (H1 and H2), and all have immediately or eventually made their symptoms worse. They've come off ketotifen, sodium cromoglicate and Montelukast, all of which they had tapered up to full dose, and then back down. So we figure either this is an insanely unlucky rare case of MCAS, or there's something else going on that we and every doctor over the past year has missed. I've been researching autoimmune conditions, inflammatory conditions, and I just, I really don't fucking know. I don't even know what kind of doctor we need, every specialist has just been focused on their own thing, but we need someone putting together all of the pieces. And so far, it's literally just been me and M doing that.
Some out of the box stuff I've been looking at is:
Graves' Disease, IGG4 Related Disease, Churg-Strauss Syndrome, Undifferentiated Connective Tissue Disease, Amyloidosis, Rheumatoid Arthritis, Liver Cirrhosis, Biliary Cholestasis.
All have reasons for/against, and I need to try and get some blood tests, and if anything comes up I need to then find a doctor to look at the tests and diagnose, but idek if I'm pointing in the right direction!
I've lost track of the number of doctors I've spoken to, and still we don't know what's wrong with M, why it's getting worse, we don't have a treatment plan, and we don't have anyone providing ongoing medical care trying to help. So it's all up to me, and I'm failing. If anyone has any ideas or directions to look in, I would appreciate it.
Possible Diagnoses to Explore
Suggestions for Next Steps
Blood Tests to Request
What Kind of Doctor You Need
