Symptoms for years, getting worse, not diagnosed


I’ve had investigations into my health for 3 years now. My mobility is getting worse rapidly.

I have a mystery potassium deficiency, keeps dropping dangerously low, all other blood tests are normal, urine potassium output is normal, no signs of cancer, potassium just seems to disappear in me and also my levels don’t always respond to the high dose Sando K potassium tablets and keeps dropping regardless at times, without warning.

My mobility has gotten worse over the 3 years, but I think this has been creeping up on me before I started noticing it.

I am unable to work a physical job anymore, I now find it hard to walk 15 minutes without feeling like I ran a marathon. I have extreme brain fog at times too, which I can’t process things mentally very well, my mind goes blank and my memory is so bad then that I can’t find the words for things, I may not remember family member’s names who I have known for years, and it feels like a thick fog.

I am having balancing issues this week which I can only describe is as if I’ve walked around in high heels for hours, then took them off and walk around. My legs are very heavy and tight even when my potassium levels are normal, I’ve never felt 100% myself for a few years now…

I’m beginning to think about getting an electric wheelchair if the distance I can walk gets worse. It also feels hard to keep balance when walking, I feel like I’m drunk too when I am out and about, unaware at times and I can’t focus. It is mentally as well as physically disabling.

I have to have blood tests every 3 weeks to keep check of my potassium, but more often it does drop dramatically, so I need blood test every week then.

I’ve requested my doctor to please check for MS, which I don’t know why they haven’t yet….

I have detached retina now and dry eyes all happening as my symptoms progress.

I have seen Endocrine specialist who couldn’t find a cause, and I am seeing a kidney specialist who also cannot find a cause and is doing more tests, my kidney function tests and all tests I have had are completely normal, just potassium.
I haven’t had an MRI scan on my head yet though…

I have numb toes which they couldn’t figure out why. Most of my body, the skin surface is numb, and feels weird to touch, sharp but also numb and has spread from my spine outwards. I have crawling sensations in my scalp on one side also. I’m physically in pain often, mainly because of muscle cramps and my joints hurt too sometimes, but pain killers don’t seem to work.

I’m worried that I won’t be able do any job soon if my mental awareness keeps failing on me more often and I cannot physically move around, this gets worse.

I have problems at work because my manager doesn’t understand and says to me “you sat down all day, can’t you stand for an hour or more?” Like I’m trying to be lazy, but doesn’t understand. I’ve had occupational Health speak to her, but it’s time for me to move jobs I think.

I hope I get an answer soon and solve this mystery, I do guess it may be Ms by my symptoms and I know that I have also had mystery allergic reactions etc (mouth swelling up, body covered in hives) they didn’t understand why either.

Hope to find some support here and find people who may have similar problems to me, I find myself frustrating and the future a bit scary.

I think you need to get as much help,as you can at work. Employers have a duty of care to you. Use whatever aids you can find to help you in every day living tasks, don’t resist due to reservations about aids. I have found a lot more independence using my wheelchair more often. I also find that using my wheelchair rather than struggling with my walker helps greatly with fatigue.

At work, it’s hard, I have occupational health mentioning to my manager that I need work while sitting and that I can sit while working, since I am off sick every month due to working hard. They won’t get temp staff in to support me or anyone else, and I am judged as lazy and told to go off sick if I feel that bad. My manager has been heard calling my sick days “long holidays”, I think my job is actually making me worse, the attitude and lack of staff, manager not booking bank staff to support on busy days. I’m not the only one leaving because of this.

I’m considering getting a wheelchair soon, if it gets even harder than this, I have to prioritise my rest at work and at home I think, which I don’t always do.

I’m speaking to my specialist doctor this week and I’ll mention to her my problems, if I get a diagnosis I hope that will help more too.