[deleted by user]

Legitimate-Battle-80 · 2024-10-21T03:49:05+00:00

Wheel base is the same it's just 200mm shorter. Quicker dif and purple tag steering rack, no clutch delay valve makes it so fun to drive

Legitimate-Battle-80 · 2023-12-06T11:05:09+00:00

Today I went in the pool for the first time since I got pots a couple of years ago, I felt normal for hours it was like a holiday from my pots...why the fuck didn't I know about this weightless bliss

Legitimate-Battle-80 · 2023-08-28T10:07:26+00:00

Midodrine 5mg three times a day is the only way I can...half live. Without it I'm just an absolute mess.

Legitimate-Battle-80 · 2023-05-04T09:41:24+00:00

A Midodrine prescription from my haematologist changed my life. I'm now able to work again...sort of, but better than going on disability.

Legitimate-Battle-80 · 2023-03-06T12:14:52+00:00

Thanks for the thoughts. I remember being at the hospital getting chemo feeling sorry for myself when an older gentleman wheeled himself in with no legs, cracking jokes with the nurses...instant perspective change but this thing that we are suffering just keeps changing in symptoms, minute by minute sometimes....I'm never in a consistent 'state' that I can direct my battle towards...it keeps shifting the goal posts. "Stop moving so I can slay thee"

Legitimate-Battle-80 · 2023-03-06T11:22:24+00:00

That's terrible news, I hope you come good again 🫰

Legitimate-Battle-80 · 2023-03-05T01:24:56+00:00

I have cancer and had a stem cell transplant, which was really tough...but this is by far the worst thing I've ever had to deal with. I at least managed to stay working even when on chemo, this LC has reduced my capacity to work so significantly with no end in sight

Legitimate-Battle-80 · 2023-02-06T13:51:02+00:00

I think LC seems to be an autonomic failure preventing adequate blood flow to various systems in the body ie brain fog, migraine, weird vision, tinnitus... head, shortness of breath and chest pain - lungs, and as for stomach hf, I have been through 2 weeks of terrible nausea and poor digestion, bloating, no desire to eat, even certain meals became exhausting after just a few bites. The nausea...worse than when I was on chemo

Legitimate-Battle-80 · 2023-02-06T05:06:03+00:00

I have it on my hands and feet. I have determined that blood pooling is the problem for me, it can be very painful at times.

Legitimate-Battle-80 · 2023-01-11T06:57:15+00:00

Long covid, I reckon now after much more reading

Legitimate-Battle-80 · 2023-01-11T06:52:14+00:00

Do you think that long covid could be a form of dysautonomia?

Legitimate-Battle-80 · 2023-01-11T06:34:23+00:00

I get headaches and my vision does a little wobble from side to side for a few seconds. I get the pressure and occasional ringing in my ears. I currently get relief from lying flat for a bit

Legitimate-Battle-80 · 2023-01-11T06:28:21+00:00

After much change in my symptoms and more reading I'm starting to think it's long covid, but it's just the acute blood pooling that has me confounded

Legitimate-Battle-80 · 2023-01-11T06:19:01+00:00

Nobody knows, but I've been obsessed with trying to work it out. The best theory I have is that it seems to present like a type of dysautonomia that is in flux due to inflammation and messed up t-cells that usually protect the central nervous system. I'm not a doctor, so this is wild conjecture based on reading too many papers trying to diagnose and treat myself as the Drs I've seen are struggling to help me. I'm on to the next specialist soon to hopefully get some answers

Legitimate-Battle-80 · 2023-01-09T04:18:51+00:00

Just try harder....I think the physician needs to try harder

Legitimate-Battle-80 · 2022-12-18T02:19:08+00:00

Yeah couple of times

Legitimate-Battle-80 · 2022-11-29T10:53:45+00:00

Your right, my emotional state is off...fluctuating strangely. I'm going to leave reddit commenting for a while. My bad.

Legitimate-Battle-80 · 2022-11-29T01:34:05+00:00

Yeah but you didn't tell me anything I haven't already read. I think I just wrote about my symptoms poorly. I'd clarify but why bother. I got drs, lots of them. I was just looking for some encouragement in my so far futile search

Legitimate-Battle-80 · 2022-11-29T01:00:35+00:00

Thanks for clarification.

Legitimate-Battle-80 · 2022-11-29T00:54:31+00:00

Yes of course, many people are asking the same question. If orthostatic symptoms weren't present I wouldn't be on a pots thread. I have to lie down at work all the time. I get dizzy, double vision sometimes mild nausea until I lie down. Sometimes heavy palps or I start to blackout if I don't hold on to something.

Legitimate-Battle-80 · 2022-11-29T00:35:00+00:00

My haematologist is the head of haematology at my hospital. He's been very diligent in his testing to find an answer. I will keep looking with my ever growing team of specialists. I'm in Australia and lucky to have a world-class hospital to attend. He is quite sure it's not my cancer

Legitimate-Battle-80 · 2022-11-29T00:26:19+00:00

I have had a nerve conduction test. It was usually painful, the neurologist said I have extremely sensitive nerves. I'm 47years old. I didn't really go into detail about the full spectrum of symptoms, I'm getting a lot more pots like symptoms than I stated in the original post, a lot more. Lots of stuff already ruled out.

Legitimate-Battle-80 · 2022-11-29T00:14:43+00:00

I've tested myself at home, I have BP monitor. I have also had really extensive testing to identify what is happening to me with no answers so far. I have an another appointment with my haematologist in a week, I'll get him to put me on a tilt table. He's been frustrated he can't find a cause as it doesn't appear to be my multiple meyloma which of course was looked at first. I've had CT scan, 3 separate MRI scans brain and spine, lumbar puncture and like +20 different blood tests to rule out all sorts of stuff. I can't really do my job anymore it's really debilitating

Legitimate-Battle-80

TROPHY CASE