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 .

Do any of my symptoms sound like it could be MS ? I know optic neuritis is often the first symptom.

Have you been tested for Polymyalgia Rheumatica? My FIL was treated for that with steroids, which he was eventually weaned off. Unfortunately he later developed a linked condition - GCA (Giant Cell Arteritis), which is often signalled by headache, weight loss, vision problems, sensitive scalp and pain in the jaw. If left unrecognised/untreated (with steroids, as a matter of urgency), it can, and did, in his case, lead to irrecoverable blindness, as it destroys the optic nerve.
If it hasn’t already been addressed, I would raise this possibility with the GP. Good luck, op.

I am really worried about you op.

it seems that you are determined to kill yourself and that is something that really you shouldn't do.

My first symptoms of MS were clumsiness and absolute exhaustion. Pins and needles in my toes and brain fog. I also had urge incontinence and I have sleep issues.

I have visible lesions on MRI.

Please please please do not kill yourself. It seems as if that's what you're aiming for - a terminal diagnosis of something, so your family are left money, and then you'll kill yourself. Please please do not do this.

I've got fatigue , off balance , pins and needles but not sure if it's the antibiotics or not

I'm not determined to kill myself - don't worry .

But what's all the talk of getting insurance for your family and taking yourself off to Dignitas if it isn't about killing yourself?

The first thing I think you should do is access mental health support from your GP so as to help you come to terms with things and be realistic in your aims and in your future plans.

And you really should take your antibiotics every day and not mess around so as you can have red wine. That's not very sensible.

You seem to be fixated on it being MS but it could be something else, honestly, wait until you speak to the doctor.

Before you do anything drastic, take a look at some of the results of people with ms and keto. My friend has been looking into it and wants to give it a go.

I am very much ok . Honestly . This would be the golden ticket for us all . We'd all get what we want ! Im rational , unemotional and fine .

I don't want this to become something daft . Please .

I'm fine .

I really don't think you are fine

I don't think you are fine either.

if you were you wouldn't be posting here and posting about Dignitas.

All I'm thinking is I could claim the critical illness , use that money , leave the family assets alone and we'd all be happy .

I have very little quality of life not just cos of the immobility but a whole heap of stuff .

I am absolutely fine . I'm thinking practically that's all .

Honestly, as a pp said, maybe speak to your gp about your thoughts, you don't have a diagnosis, yet you have made a massive leap and are talking about dignitas .

@capabilityfrowns

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 .

What? It really doesn't sound like you have MS at all, OP. And what you wrote above is insulting to those who live with MS.

I'm sorry if my choices offend but my circumstances may well be entirely different to yours .

I think you have got it in your head that you are ill with something terrible. Terminally ill with something that is going to cause you to decline in such a way that you feel the best option is suicide.

But you haven't been diagnosed with anything. And that's what you need to remember. At this point, you have not been diagnosed with MS. At this point, you don't know what's wrong.

You do need to report your symptoms honestly to the doctors - if you can't dress yourself, can't get in and out of bed, put shoes on, or whatever if that's one day in 3 tell the doctors that, if it is every day, tell them that.

And for goodness sake don't take days off your antibiotics so you can drink alcohol, that's not sensible and will reduce the efficacy of the antibiotics.

Even if you did have MS - and it seems like you don't - what makes you think there aren't any treatment options available? There are. They're quite good, too. I certainly wouldn't go from "maybe I have this," to "life isn't worth living because I might have this," straight away.

Who is looking after you from an optic neuritis point of view?

Opthalmology at hospital

How are you feeling today op? How are your symptoms? How are you feeling mentally?

Hi I'm same as always . Been in bed all day and rocking my oodie 🙂. My right ankle has decided not to work and my left knee never works so it's easier to stay laid down .

The guy I'm seeing asked if I fancied a trip away and could I manage scar fell pike, well can't manage a flight of stairs so that's a no.

I'm tucked up watching friends .

In the nicest possible way, how are you managing to see anyone? Wouldn't you be best to prioritise looking after yourself and get yourself in a better state before you date anyone?

I just don't know how you can get dressed, make up, done up, and go out - you can't drive or anything and you're going on to half pay, you said, so you'll have to get public transport or a taxi and how are you going to manage that when you're as ill as you are?

I don't go out . He comes here .

What's it got to do with anyone ? It's company for me .

is that sensible? How well do you know him? You're very vulnerable.