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 .

And where did I say I cook ??? I have to cook for me anyway - I buy kits . Hello fresh .

He cooks ! I'm ill I'm not dead. He's cooked for me or taken me out and bought dinner . He's nice . I like him . I can still shower and dry my hair and apply make up , when I can be arsed . I can pull a dress on . I don't look disabled . I look nice sometimes. He likes me . We're getting to know each other.

I didn't say you aren't allowed to shag. I didn't say anything about your ability to date in any form.

I said that when you are dating someone that visits you at home during a time that you are - by your own proclamation - housebound, unable to eat or drink and immobile, its insensitive for said person to ask if you fancy a jolly up a mountain.
Wouldn't you agree?

This is how YOU are describing your symptoms. This is how YOU are describing your condition(s). There's never a "sometimes" or a "occasionally" or even a "on a bad day", but a constant representation that this is your life now and has been progressing to this point for "two years".

I'm not sure if you are seemingly overexaggerating your symptoms only online, or if you're also doing it to the health professionals involved in your care, but its not helpful to getting a diagnosis and hopefully a treatment plan established.

And you did say you cooked. You said you were cooking the other day when some guy from online dating showed up in your village. Since you also said you haven't eaten in a month, I assumed you were cooking for someone else.

@capabilityfrowns

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.

That isn't how MRIs work. If there was anything there to see, it would have found it.

Will you sod off and stoop bugging me ?

I said I was cooking when the stalker rocked up . Sometimes I'm cooking cheese on toast .

Stop picking apart every post . Yes I'm very immobile at present. It's been pretty consistent for 2 years because even when I seem to be in remission from a flare up the moment I try and walk any distance it flares up again .

Why are you posting ? Do you think you're helping me or just being a bitch ?

It clearly didn't find the optic neuritis. I've been told again and again that's what opthalmology saw . The scans were there . Are there . The swelling was almost immeasurable on their equipment the consultant told me .

They used a volk lens and saw it themselves.
It wasn't visible on the MRI .

I was in opthalmology 7 hours that day . The mri was done after the 5 days of high dose steroids . The idea of that was reduce the swelling . It did .

It's like it came as a surprise the swelling didn't show 🤷🏻‍♀️. I have little faith now in this diagnostic process

Optic neuritis is caused by inflammation of the Optic nerve. If you had steroid treatment and the inflammation was gone, of course it wouldn't show. It would only show any ACTIVE inflammation.

Mine no longer shows on an mri as there is no longer active inflammation. I do however have some permanent damage to the Optic nerve, but that a completely different thing.

I'm still not sure why people are feeling the need to nit pic pointless things on this thread, over and over, all of which have already been explained. I think they are bored and trying to entertain themselves.

Thank you Gigahearts

I've also got permanent damage to the nerve . I've lost visual fields. The nerve is apparently pale as was starved of blood supply while swollen.

Sarcoidosis? I had a friend who was diagnosed with this a few years ago. Very debilitating and came on fairly quickly, but with the right diagnosis and treatment, fully recoverable.

Looked it up
But no skin or gland issues .

I need House !

Even after active inflammation, don't lesions leave scars? I have MS and my brain/spinal cord has scars all over it from old lesions that are no longer actively inflamed.

@CouchCat Yes, I've mentioned this previously in this thread. I've also mentioned I have scars/plaques from old attacks that have caused permanent physical disabilities.

A pp told the op that the steroids would have completely "cured" her ON and claimed they knew this as they also had MS. Anyone with MS knows this sadly isn't true. You can't "cure" the scars and damage, even though you can treat/prevent the attack. Basically making her out to be a liar because apparently us disabled people, can't ever cook for ourselves our go out for food and have sex. We've to sit in bed resting and feeling sorry for ourselves because we struggle with the daily tasks that everyone else takes for granted.

The op said their was no optic neuritis showing on the mri, possibly because the inflammation had been treated with steroids? I've obviously never met the op so I don't know the full story, just offering my personal experience with ms, which is what she asked.

And I really appreciate your input . So thank you .

This was the first ON attack I've had , and the mri was done too late I think .

I've got permanent damage to the optic nerve which was confirmed Weds at my appointment

No one answers my questions. I asked if this could be MS and the opthalmology doctor said hopefully not with nothing to say why .

I've always fallen over . For years . I fall a lot . I thought it was me being clumsy. When running I tripped up
Kerbs and fell flat on my face . I'm always sick . I eat very little now . My arms go numb but that could be the refinah antibiotic I'm on . My limbs jerk . I've got pain in my ankles and knees . I don't know what that is . I get cramp in my calves a lot . My elbows wrists hands knees and ankles ache . My feet and ankles swell .

I've played down a bit to the fella I'm seeing as he's a marathon runner, I used to run and was part of a club . I was fit . I'm not now . He knows I'm having problems but maybe not to the extent I am .

I have a perching stool for cooking . I do still cook sometimes for myself and sometimes I eat toast depending on what I can be arsed with .
I have a toilet seat extension. I hide that in company.
I am trying to make the best of things because I live alone and I pay a home help once a week but I'm running out of options .

I've got a neurologist appointment 10th dec because I rang my gp to report the limb jerking and she was worried it was a seizure of some sort - I don't think it is . It's not a seizure. I don't lose consciousness and it's just one violent jerk that wakes me . It's both arms legs and torso it happens to . When it starts it happens a lot . But doesn't happen daily . I have sleep problems and fatigue .
I'm really tired . Really really fed up . I'd like just to know what's happening to me and why . I don't have any help other than what I pay for and I can't afford that now . I got turned down for PIP .

God when I read that back I see I am ready for leaving . I text my dd tonight but she's cross with me because I began divorce proceedings so isn't speaking to me at moment .

Life is just too hard . It's too hard to do alone . If I don't find a way to work again I'll be living in the car .

@GigaHearts

A pp told the op that the steroids would have completely "cured" her ON and claimed they knew this as they also had MS. Anyone with MS knows this sadly isn't true. You can't "cure" the scars and damage, even though you can treat/prevent the attack.

Who said that? I can't find it.

Giga is referring to this post I think

My ON has caused permanent damage to the optic nerve in one attack .

@capabilityfrowns

Giga is referring to this post I think

My ON has caused permanent damage to the optic nerve in one attack .

Ah. Thanks. I think, though, what that poster is saying is steroids calm the inflammation - that is what would be causing the sight loss - and in MS, any damage to the nerve from the inflammation sticks around. This would have been visible on the MRI if it was due to demyelination from MS.

Sorry you are struggling OP.

I have MS, dx at 40.

I agree with PP. MS lesions would have shown up on MRI scan. My first occurrence was Transverse Myelitis, two areas of inflammation in my spinal cord and lesions found on my brain, second acute attack with vision related, and has cause paling to optic disc, and also further lesion on brainstem.

So that’s good news, that it isn’t MS, but of course you need an answer and hopefully treatment for what is causing the symptoms. Hopefully the Neurologist will be able to work out what is wrong, if the cause is neurological in nature.

I hope you are feeling much better soon, good luck.

Thank you. The eye and the limb jerking is associated with ms so I'm just not convinced and I've just totally lost my balance in the kitchen and crashed into the wall while letting dogs out.

Been in bed all day .

Maybe you should go to the hospital?

Alcoholism.

Liver disease, caused by alcoholism. Nerve damage, caused by alcoholism. Drifting relationship with the truth, related to alcoholism. Swelling of feet and ankles caused by alcoholism-related liver, kidney, and/or heart problems.

I've noticed you are pretty loose with the truth, but you will never get any accurate diagnoses until you are honest with doctors about your past ongoing relationship with alcohol.