What else could cause these symptoms?

[capabilityfrowns]

18 months ago I was fit and active . I'm 51.
I began to lose mobility, my knee and ankles began to ache and swell . The swelling gets so bad I can't walk . It flares up and subsides .
I then developed an optic neuritis in one eye . Spent 5 days in hospital on high dose steroids to save my sight .
Although the swelling has subsided there is permanent damage to the optic nerve .

During tests it was found I had latent TB and possibly Lyme disease so I've been treated for both conditions.

However the mobility issues have remained and is now affecting more joints , elbows, hands as well as both feet and ankles and knees . My feet swell so badly if I'm upright I can't get shoes on . My ankles feel as if they've been hit with a hammer . I can't get up steps or kerbs .

Recently my arms and legs have begun to involuntarily jerk . Especially at night when I'm asleep or relaxed, and it wakes me up .

On slopes or steps I feel off balance .

I've lost weight and sleep a lot .

I'm under :
Optometrist
Musculoskeletal
Rheumatologist
And now neurologist. (Awaiting first appt)

But none of these departments seem to link in . I am worried this could be MS. I had an MRI but this was weeks after the steroids so the optic neuritis had gone down and didn't show on the MRI , no other abnormalities were seen .

No one seems to be bothered in actually investigating the causes of these symptoms, I'm just being treated for the optic neuritis and have had treatment for the latent tb and Lyme . The infectious diseases consultant does not think my symptoms are due to infection and I've had a lumbar puncture which ruled out active TB .

The longer this goes on the more disabled I'm becoming . My mobility is so much more reduced than it was . And is getting worse not better.

Does anyone have any ideas ? I'm not scared of being told it's MS or anything else I'd just rather know but none of the depts are joining the dots .

Anyone gone through similar?
Got a diagnosis?

Please help me try and work this out .

Yes it's fine . He's perfectly safe . It's nice to have company when I want it and we chat every day. I'm not vulnerable. I'm unwell with something that I've had for at least 2 years and I'd like to know what it is .

I am so worried about you.

I'm going to phone rheumatology and osteo on Monday.
Also going to call occupational health with a view to getting some back to work plan in place even if it's from home .

I stopped dating for ages . But I aren't getting younger and I can't just out the whole of my life on hold . I thought my symptoms were due to the Lyme and I was excited to think I'd take the treatment and get well so I dated one guy and I booked a holiday. Now I feel it was premature. But I enjoy the company (and it's not too much for me ) and I'm hoping to be able to take the holiday . If I can't I'll cancel .

I'm alright I'm just desperate to know what this could be because it's getting worse not better. I know optic neuritis is often the first symptom of MS.

How am I trolling the OP? That's a vile accusation!!

It's fine honestly

I used to get spasms in my eye and nerve issues, but I have the symptoms under control.

There's no reason why you won't be the same.

Yes I'm a bit wonky donky sometimes but mostly it's not so bad. Please don't consider suicide OP there's honestly so much to be positive about.

I'm not going to do anything until I know what this is - then I'll review my options . Being in limbo is worse than not knowing.

Please please don't commit suicide.

I'm not going to commit suicide. The only way I'd go voluntarily is if this is something that's going to progress and if my quality of life continues to decline and IF it's something significant that I could utilise dignitas for then I would . Only under those circumstances. Please don't worry . I've asked for my divorce to be out on hold just because if it is something I can claim the critical illness insurance for then my soon to be ex dh can keep the house , I'd take the payout , my life insurance would pay out so I'd just leave everything as it is , my soon to be ex dh would get my pension, my part of my life insurance and so would my kids .

I dont think you have any understanding of the word vile and what context it should be used in.

You have pulled apart every post the op has made and scrutinised her life choices and actions, all she wanted was a bit of advice regarding her symptoms.

Shes not suicidal so stop telling her she is, that's vile!

She said she was going to Dignitas. Putting plans in place to go there.

I'm autistic, and I'm well used to being bullied for not coming across right, but to be accused of trolling someone I sat up last night worrying for is beyond my understanding.

The lumbar puncture and the MRI you've had would have shown MS OP.

There's a massive difference between ending your perfectly "fine" life by suicide and choosing dignitas when you have a life limiting illness.

"Please please don't commit suicide." Is batshit when all she said was she would make her decisions, based on what's causing these issues. It doesn't make her suicidal in the slightest. She has no idea what's causing the issues and is perfectly happy living her life, to the best of her abilities, until she finds the cause. It could be something as simple as low iron or vitamin D.

I have RRMS and I can guarantee you, if I could afford it, I would absolutely be choosing to end my life in a dignified way, using dignitas, when the attacks render me incapable of wiping my own arse and unable to feed or care for myself. There's no way I want to put this burden on my family so I can understand when the op is coming from.

Unfortunately the Lp samples only got sent to test for active TB as it's a huge test so we're all used up in that

The MRI I don't trust because it didn't even pick up the optic neuritis as it was done AFTER the steroids were administered by iv for 5 days.

Ladies - please don't fall out , yes I would definitely use dignitas if this is something degenerative but that's a way off and a leap as I don't know what this is . That's half my issue really . I'm not on any treatment because no one knows what it is - the tb and the Lyme have thrown a spanner in the works .

I'm very much in possession of my mental faculties, so things like having a date , or booking a holiday are just my ongoing attempts to live life and I'm trying hard not to be totally handicapped by what's happening to my body . People seem to see that as me "lying " about how bad I am , but my take is I'm still here so I'm trying to find some joy in life . If that means seeing someone for the odd weekend or having a date or booking a holiday - then that's what I've done .

I could just give up but I haven't . IF this is something that's going to take away from me , then yes I want options later . That's why I'd like to know what it is and if there's any treatment. I'm just being left in intolerable pain with poor mobility at the moment .

That's your view. To which you are perfectly entitled. To me, it's different. Suicide is suicide. And the op seemed to me to be putting plans in place to go to Dignitas if she were to be diagnosed with MS.

Thank you xx I'm so sorry to see you're struggling too . And that's exactly where I'm coming from . I'm not off to jump off a cliff - I just want answers and then I can make decisions.

It's not vit d - I'm on that daily now and have b12 injections. Had a zillion blood tests and everything they flag they treat but I'm no better.

old

I don't have anyone who could help me , I live alone , I've no family nearby , so my circumstances would come into play if it was something life limiting .

I don't have money for care . And I'd rather not spend what I do have on that , I'd rather make choices based on my preferences, and leave something for my kids . I get maybe you don't agree , but I feel very strongly that I'd want to choose .

@oldfatandreadyforarevamp Do you even have MS? You don't seem to know much about it or the fact it's a life limiting, demyelinating disease.
Claiming suicide is suicide is very small minded.
We don't let our beloved pets suffer an undignified, painful death when they are diagnosed with a terminal illness. Why should we as humans, not be afforded the same choice over OUR OWN bodies? Everyone should have the right to die in a dignified manner if they choose to do so.

Have you ever sat by, watching a loved one completely disintegrate in front of you and die in agony? Your 'opinion' states otherwise. You don't get to comment on other people's very valid, PERSONAL choices.
It's okay to have your own views and opinions but you don't get to dictate and force those on others.

My friend was featured in the documentary that was on last week on itv called "a time to die" (its on itv x on catch up ) and I also feel very strongly that it is my right. It's also very expensive. And it means I'd need to be able to alone to stop anyone else being implicated which means I'd need to go maybe before I'd have to otherwise.

Yes I would do that if this turns out to be life limiting.

So for now I'm enjoying my date and planning my holiday and trying to get to the bottom of it .

Wait. So this guy has come into your life very recently, you've been unable to leave your house to spend time with him, unable to eat or drink (yet still cook for him?), you are too unwell to work, even from home, you cannot manage to walk up a single step or kerb, your knee 'doesn't work', you have limited vision in one eye. You're pretty much stuck upstairs in bed.

And he asks you if you want to go hill walking with him?

How amazing insensitive of him. Whyever would he consider the possibility of you being mobile enough to do that?

Oh kittens bog off please .

I'm so so sick of justifying my existence. I'm soo of explaining myself. I'm seeing someone for the occasional weekend , we got on , he text after the date saying the distance was an issue but then he came off his online dating apps and got in touch to say he really liked me , he didn't usually click with anyone and he would like to see me again and stay in touch .
And I want that too . He's gorgeous and the first man I've fancied in 4 single years . It's not going to be the next great love affair , he's very very fit and active ( runs marathons) so it's likely he's gonna get bored with my immobile arse very fast but we're spending the occasional weekend day together. What's wrong with that ?

I used to run . I was in a club . I used to be fit . Active . I think he hopes I'll be that person again one day and we might have things to do together that isn't shagging .

For now shagging will suffice . Hes company. A human touch . Intimacy. And it's nice .

Why am I not allowed this ? Because I'm not well?

@capabilityfrowns You don't have to justify yourself to anyone.

I'm much more disabled than you and still manage all these things. Some days my disability is invisible to others, other days in confined to my bed. It's a sliding scale. You do what you can when you can.

Disabled people deserve to live life the same way everyone else does @kittensinthekitchen the thing about a disability (diagnosed or not) is that no two days are the same.