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 .

If you have Lyme that could cause it. I’ve also heard of Covid doing this. Even if you had no respiratory symptoms, it could have been a bout of asymptomatic Covid. New Covid strains can fuck your muscles apparently.

There are a few conditions that are similar to ms and can have overlapping symptoms. Almost like sister diseases. Have a Google for MOGAD, NMO, Transverse myelitis and MS to see if any the symptoms fit and ask your neurologist to test for these with bloods. There has been a spike in these types of autoimmune conditions since the pandemic.

That sounds awful. Poor you!

I agree it could be anything (helpful) including post-Covid syndrome, but the outstanding feature to me is that your remaining symptoms speak very loudly of inflammation. The causes of inflammatory responses are notoriously difficult to track down, and you seem to be on an appropriate diagnostic pathway. Could you talk to your GP about getting steroids or similar, to damp it down while everyone figures out what's wrong?

Also, do make sure you inform them of any rashes as they can be clues.

Hell's bells, I didn't know that. Covid is the gift that keeps on taking, isn't it 😢

I've never had covid . I'm pretty sure of that . I still test . I think my immune system has been in overdrive for 2 years and I've not had anything other than pneumonia a year ago and the immobility preceded this by at least 6 months .

I tested at the time I had pneumonia. It wasn't covid

These types of conditions can be triggered by any virus or vaccine. It's an immune response that kicks your immune system into overdrive causing it to attack itself basically. It does sound like you have some sort of ongoing inflammation like pp have mentioned, so maybe asking for some more steroids until they find the cause could help?

The steroids didn't actually help with my mobility but did reduce the swelling behind my eye .

The rheumatologist was going to start me on methotrexate but the tb put paid to that for now - they won't immuno suppress me until I've completed the 3 months of tb antibiotics. But even then they weren't sure what it was just some sort of inflammatory arthritis.

Have you looked at autonomic dysfunction? It's a wide range of issues but can be linked with joint inflammation and eye issues. A good friend of mine has just been diagnosed with it and it can be managed but diagnosis can be a battle.

Could be lupus, what did rheumatologist say? Bloodwork will show it. Lyme is diagnosed by symptoms, and if you treat it quickly it can go into remission- not an expert but I know acting quickly is important.

It's not lupus. Been tested. The Lyme was an imm antibody not an img antibody- so could be a false positive. Just had a further test for Lyme so get results mid dec . An imm response means couldn't have been exposed for more than 3 months and the sunrooms predate this by a year so probably not Lyme causing it plus been treated now .

Whats your alcohol intake like?

Your symptoms don't really point to MS at all, especially if you've had a clear MRI. It sounds like more an inflammatory condition or an arthritis. BTW, optic neuritis doesn't cause permanent sight loss. Any sight loss is commonly temporary and returns after steroids.

Not true egg, I have permanent sight loss from from optic neuritis. Vision can return if the optic neuritis is treated early enough but sometimes it doesn't. I've also had clear mri scans in the past and later diagnosed with Ms.

@EggEggEgg It depends a lot on the visual acuity at diagnosis. People with poorer vision have a worse long term prognosis.

OP It sounds as if you have Lyme arthritis. There's a good article here on it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4443866/

@GigaHearts

Not true egg, I have permanent sight loss from from optic neuritis. Vision can return if the optic neuritis is treated early enough but sometimes it doesn't. I've also had clear mri scans in the past and later diagnosed with Ms.

I also have MS with multiple attacks of ON. It's rare for sight not to return after an attack; do you mean full vision or spots? I do have some spots in my vision that have never returned but my vision has somehow learned to ignore those areas.

Did your later MRI scans show abnormalities? I would suppose that, yes, you would only be diagnosed after that occurred, not before, explaining the clear MRI scans. Lesions only begin to present on the brain when the MS is activated (don't ask me how!)

I'm permanently blind in one eye after an attack of bilateral ON. I also have nerve damage in one leg, so struggle to walk properly. Most people I know with ms have some form of permanent nerve damage causing various issues from blindness, paralysis, incontinence, speech etc. Depending on the type of ms they have of course and where the damage is, not everyone will make a full recovery with steroids and some end up permanently disabled from the attacks and damage to the nerves.

I started showing symptoms before any lesions showed on an mri. Probably due to the inflammation? Or maybe something else, I'm not too sure. I now have some active lesions showing on an mri and some old scars from previously active lesions.

I've got a telephone appt with a neurologist next month so I'm hoping someone joins the dots .

I thought it was Lyme causing this but it appears that the test could have been a false positive and as I explained the imm result means it was early Lyme so couldn't explain the symptoms as far back as they go .

I've got serious ankle pain today and can't walk .

Why do you think you have MS? Your MRI scan was clear.

So no answer to the alcohol consumption query?

How accurate is your reporting of symptoms? You've mentioned lots of symptoms and issues, but not the regularity of them. For example, you've said you can't manage steps or kerbs, but you were upset last week about your friends not insisting on you coming to the pub with them, and talking about a long walk home. You've mentioned not being able to work, yet simultaneously said about having an early shift, or mentioned working from home. You say you haven't dated in months, yet reference a guy you're seeing.

What I mean to say is that to get the best result from both/either health professionals or online, you need to be specific and accurate about your symptoms and circumstances.

I can't manage steps and kerbs
vs
On two occasions, my feet haven't been able to lift sufficiently to climb the stairs in my house

I can't work
vs
I've had to move to working at home completely and on average once a week for the past three months I've had to take a day off sick as fatigue has made it impossible

I have rheumatoid arthritis
vs
Rheumatoid arthritis has been mentioned as a possiblity because of X symptoms and Y test results, but hasnt yet been formally diagnosed

Otherwise, the self reporting looks inaccurate and unreliable and could/will stall any diagnosis and treatment

What antibiotics are you taking op?

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 . Also had 21 days of doxycycline for the possible Lyme but that's finished .

There was no walk home from The night out - it would have been a taxi journey! Hence then asking if I could give them a lift . !

My right ankle has flared up today and I can't weight bear . My left knee is permanently swollen and painful but that could be the osteoarthritis.

My mri was done right after I had a 5 day stay in AMU on iv steroids so the swelling had gone down already .

I had one date within last 18 months . Yes it's that guy I'm seeing but no often due to distance , he comes to me .

I don't get what this has to do with the symptoms though ?

I cannot get upstairs unless one leg at a time or on my bottom . If it's just one side affected I can get up on leg st a time but when it's both sides I can't and that flares up often and lasts weeks .

The mri was brain - but the opthalmology dept has confirmed it was optic neuritis with permanent nerve damage .

And yes I've been working from home but not since July when my eye sight went, I've been off sick .