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 .

The limb jerking is the latest symptom , tends to happen at night when I'm either asleep or very relaxed and drifting off to sleep . It's my arms legs and torso this affects . It's one jerking movement that's violent and wakes me , once it starts it keeps happening to different limbs but doesn't happen every night .

If you want advice here, you'd be best to post truthfully - not that I'm saying you're lying as such, but I think you play down your symptoms at times, which leads to people thinking you're being inconsistent.

How can you date, when you can't dress yourself and get up and down the stairs? Same with going on holiday?

The rheumatologist thought I had serenegative rheumatoid arthritis and was about to start me in methotrexate but the latent tb put paid to that , as I cannot be immuno suppressed until treatment is finished for that .

But it doesn't explain the optic neuritis. Or does it ? Can rheumatoid arthritis cause optic neuritis?

The infectious disease consultant thinks it's auto immune not infection.

I haven't had any alcohol since taking the antibiotics which is a 3 month course of refinah- it's causing me to feel sick and I've lost over a stone . I can't eat or drink .

I've only 3 weeks left on them .

Well, that's a lie, isn't it? Last month you were being "plied with red wine" on your date. If you're lying to the doctors too, then you're just making it harder for them to figure out what is wrong. Don't tell them you don't drink when you clearly do. Excessive drinking can cause all of your symptoms. Is that why you lie about it? Because you don't want that to be the reason.

I am trying to live . I'm trying to carry on . I had one date in 18 months and I've told him everything.

I booked the holiday when I thought the symptoms were due to Lyme disease and was optimistic I'd be well by next September. I needed something to look forward to .

Now I'm scared I can't do it . But I live alone and I'm having to get in with life as best I can . And that's all I'm trying to do .

If it is MS I have a plan to claim on my insurance , ensure my family are sorted and I will join dignitas . I don't have a great quality of life, and I'm alone so it's getting more difficult. I'm just trying to live as I can and enjoy what I can when. I can .

I do have to return to work in some capacity next month , but will probably be from home with adaptations for my computer screen so I can see it .

I am doing a desk bound role .

Fgs I had some red wine with a meal on a night out ! I didn't take my antibiotics that day so I could eat !

That's not how you're supposed to take antibiotics!

Try again. It wasn't "some red wine with a meal". You were drunk. Those are your own words. You've also talked about "going out with the girls".

So, like I said, you're only making it harder for the doctors if you lie about this to them.

The infectious disease consultant has said it's fine to miss a day if I have an appointment to do something which over 3 months has been very rarely - it's a three month course and it's heavy going . If I have something planned I take them after because the side affects are debilitating for a few hours .

I've checked with the consultant that I can miss the odd day- it's a long term treatment.

I was drunk because I haven't been drinking ! I had red wine with a meal ! And I didn't go out with "the girls"!

Will you take your vendetta against me and go away ?

Maybe when you stop wasting people's time with half-truths.

Peanut

I do not know what I've ever done to you but the symptoms and circumstances I've posted are the truth .

If you don't believe me - why post ? Why do you post on my threads ? Just scroll pst if you don't buy it .

I suspect that I have MS and I'm having a really hard time with my health . I'm not a drunk or a fantasist. The symptoms are what they are , I've got permanent nerve damage in one eye and I've been in and out of hospital for the last 6 months. If you don't believe me - move on . You are still allowed to date and book holidays even if you're under investigation by the nhs you know ?

If I can't do the holiday I'll cancel . And I enjoy the company of a guy I dated casually . So what ? My manager at work positively encourages me to try and socialise because my mental health is in the toilet and she thinks it does me good . I'm just trying to get by . I'd like a definitive diagnosis- the reason I posted was for ideas . Not for you to come and poke and prod and berate me - I don't know what I've ever done to you but I'm asking you to leave me alone and scroll on if you don't believe me. Please .

Sweetheart is that what this is about? Committing suicide? I'm so so sorry you feel so low and I'd advise you strongly to phone the Samaritans.

I'm not sure insurance pays out for a suicide, I'm sorry xxx

I don't think anyone can diagnose you here and if you're not feeling great, maybe it's better not to ask for guesses from non medical people who don't know you and can't see you , it'll just put ideas in your head .

You outright lied on this thread that you haven't drank since you started antibiotics. Your story about having a drink with a meal doesn't change that you lied. People asked you about your alcohol consumption because it is relevant to the advice and suggestions they give. You asked what else could cause these symptoms, I answered excessive drinking. Just because you don't like that truth, it doesn't make it a vendetta against you.

No no it's not but if it's MS I have a solution for everyone including me !

My friend was in a documentary last week on itv as she went to dignitas. - and I believe in the right to do that and yes I would do it while I can do it alone without implicating anyone else . It costs 10k ! That's without the travel and hotels etc .

But you don't have a terminal diagnosis do you? hugs.

Wow, judgemental post or what?

I really think you're jumping the gun ,at least wait until you have a diagnosis .

I agree - I think you're catastrophising.

No - but if it's ms I would explore the possibility.

It would enable me to provide for my family , and save me the stress.

I'm in a pretty bad situation right now . I'm not really well enough to go back work but if I don't I'll lose my home as I'm in rented . I go to half pay next month which I can't afford .

As for the "lie" I've had one drink with a meal in 3 months. I did check with my tb nurse if I could have a drink (she texts me and I text her )- she said as long as I don't overdo it . I think one occasion in 3 months is ok .

It's been almost 2 years now and I'm getting worse so yes I'd like a definitive diagnosis. I'm seeing neurologist soon .

I have MS. Trust me, you don't want it.

Also I never said you lied. I think you post confusingly and I think you're cavalier with your health, but I most certainly did not say you lied.

I'm really detached from it all . I just want a diagnosis.

I thought maybe someone who's had similar symptoms might know what it could be .
I'm fine . Really .

No not you - blue eyed peanut seems to fucking hate me for some reason! They post on my threads regularly.