It's rare - but anyone know anything or anyone who has been diagnosed with spinal tuberculosis?

[penelopepipsqueak]

I'm trying not to Google to much .

Basically after months and months (20 months now) of inexplicable symptoms , culminating in the loss of sight in my right eye , I have been diagnosed with tuberculosis of the spine, which is affecting my brain function.

I've been battling to get a doctor to take me seriously but after losing my
Sight I saw a brilliant neurologist who had a diagnosis within 5 days.

I have no idea how, when or where I've contracted TB but it's spread from the lungs now into spinal column. Im not infectious. I have never lived abroad, dont eat anything unusual, the only
Place I can think I've come into
Contact with it is work .

It's affected my joints to the point I can hardly walk , and the sight went in my eye 2 weeks ago . I've become slowly completely disabled.

Now the good news is apparently this is treatable but maybe not the underlying damage .
I'm going to be given 9 months of treatment and I'm now under a specialist infectious diseases consultant.

Has anyone ever known this - what was the outcome ? It is different to having tb of the lungs . As far as I can see the treatment is chemotherapy/ possible surgery and long term drugs but I'll clarify that when I'm back in hospital.

I can't find much around prognosis. It's very rare in the uk. Obviously I'll be asking questions when I'm back at hospital, but I was so shocked I dont think my brain was able to process and I was whipped straight in for a lumbar puncture. I've already tested positive. The LP will confirm and I'm back in hospital next week .
I'm slightly panicking as I live alone and no pay = no rent .

Hopeful bump

No one ?

I'm so sorry to hear of your diagnosis. I don't know anything medical, I'm afraid, but I'll keep this bumped for you while I try to write something about the financial side.

If you want to hear about financial stuff, that is. I appreciate that might barely be on your To Do list right now.

I've tried to ring my critical illness insurance today to see if I'm covered but it's absolutely impossible to get through to the bloody claim line .

I was on hold 3 times then just got a message saying they're all busy taking other calls - call back later .

I've got the claim line direct number but it's the same message

I can get sick pay with work for 6 months, and can ask for special consideration to extend it . Work is the only place I could have contracted it imo but obviously I'd never prove it .

That's very good that you've got critical illness cover.

And very good that you have an employer, so sick pay should tide you over the first period of shock and assessment.

And thank you for the reply ! I was getting lonely .....

I'm not sure if it will cover me - I've been trying for 3 days to get through to them to ask .

Yeah, dealing with the big stuff all on your own is not fun...

Hello, I do know of a man who had this in his fifties, about thirty-five years ago. Like you, it took a long time to be correctly diagnosed, during which time he was bedridden in hospital. His symptoms were all in his spine but cleared up rapidly upon being given the appropriate medication. He regained a good level of activity and lived well into his eighties. I hope this is of some help. However I don't know the prognosis where it has affected other areas of the body.

With every good wish for your treatment.

Thank you

I'm beck in hospital tomorrow to see the opthalmogist as my eye hasn't improved but then again I've not started the treatment as yet - they're waiting for the results of the lumbar puncture.

But I've had unexplained synovitis and athritis for 20 months, had to go up and down stairs on my bum !

Fatigue like I've never known and all sorts of weird and wonderful symptoms- the neurology consultant tested me because he said nothing made any sense . I'd had steroids for the inflammation but was getting new symptoms- my optic nerve became inflamed after the steroid treatment, and then I had 5 days of high dose Intravenous steroids but the inflammation remained . I'm hoping the sight loss is temporary, but I don't know .

I've been unable to bend for months , can't do shoes up , my knees , ankles and elbows are swollen and painful and I can't grip things . I went from an active woman who ran 3 times a week to bed ridden . I'm a little pissed of with my gp- one actually told me he wasn't arguing with me when I asked for a referral and hung up . Another said there is something wrong with yku I just don't know what . It's only since I lost my sight 2 weeks ago that anyone has done anything.

My friend had it.

She contracted TB on her spine anyway

I became disabled many years ago and know a little about long-term disability benefits, although since the system was "simplified" it's now fiendishly complicated...

If you do end up unable to work, either for a period during treatment or longer term, then your National Insurance record becomes relevant.

It still seems to be the case that what matters are your contributions in the 2 or 3 years immediately leading up to the claim.
https://www.gov.uk/employment-support-allowance/eligibility

If you've been working full-time till recently, this is good from the ESA point of view.

But I hope it won't come to that point with your employer.

How is she please ? Has she recovered?

I've no knowledge but my heart goes out to you

Thank God for a vigilant doctor and diagnosis
It's good NOT to google but I asked a doctor friend (not a specialist) and occular TB is cureable

What can we do to help you?

Thank you so much for replying because I feel totally in the dark

It's not ocular- it's my spine and brain - the weir and wonderful symptoms are I think caused by the fact it's in my spinal fluid and brain ....as far as I can work out - i think the eye is just a symptom .

I'm just in unknown territory! I live alone and it's a bit of a worry . My poor doggoes are wondering why mummy is always asleep. I've not been mobile for months . I was working from
Home until I lost my sight and now I can't see the laptop. It's possible I can get a dse assessment and get a home office set up .

And honestly I'm slightly cross with my gp practice but that neurologist has been amazing - he's an opthalmology consultant. When I went in the doc I saw rang him and he came in to see me . In jeans and t shirt so I suspect he was off - he said absolutely nothing made sense . He sent me straight up for bloods , X-rays , and an MRI . I'm so grateful he was switched on enough to test for tb, no one else had in 20 months. He'll be getting a decent bottle of whiskey 😊. If undiagnosed it's fatal , and I've been slowly disappearing .

Sorry, I know it's not occular tb, just thought if that can be cured, there's a good chance of yours being reversed

Are you getting sick pay?

I can't imagine how frightened you must be. Do you have some RL support?

Yes, I'm a bit worried that you're living alone and having all these sudden losses of capability.

Is there anyone with whom you can set up a "checking in" routine? So that if they don't hear from you by a certain time each day they physically come into your house and check on you? Also, is someone a keyholder for you, or is there a key outside somewhere?

Losing mobility and losing sight make you very vulnerable until you get things in place for safety.

I know your head must still be whirling and you have a lot to think about.

But please do sort out a daily checker fairly urgently. Even if it's just your manager at work who can dial 999 if the need arises.

Thank you

My immediate line manager texts me daily . She's been amazing. She checks in every day with me . I've got friends here where I live and my neighbour is my mate so if I'm not seen or heard someone will check .

My manager has been running me to
And from hospital. My neighbour is doing that tomorrow.

On Saturday I've an afternoon tea booked with friends - I'm going to go but I'll be straight home after to bed .

My dd is also checking in . She's coming to see me Sunday . I think she thought I was putting it all on for some kind of affect but she's got it now . She lives an hour away and is a busy little bod but she texts me .

Nothing has really changed since diagnosis except my sight loss . And I still have one eye .

Oh that's a relief. Very glad you've got so many good people around you!

Lots of good luck for the appointment tomorrow.

Tuberculosis whilst often difficult to diagnose is fully treatable. You will be on antibiotics for a minimum of 9 months. Initially 4 different antibiotics for two months reducing down to 2 antibiotics for 7 months. Symptoms should start to improve after about 2 months. An MRI of your spine should show if any destruction of vertebrae. Hopefully your sight will improve, they may give you high dose steroids to reduce inflammation in the spine & eye initially.

The treatment is usually well tolerated & you will be monitored closely for the duration of treatment. You should have a specialist nurse that will support/monitor you whilst on treatment.

A little different but hopefully reassuring. I had all manner off very scary and painful problems with my eyes. Lots of faffing and resting for everything under the sun relvealed I had TB ( but in my lungs). I had the antibiotic treatment and the problems with my eyes simply stopped and have never occurred again since (5 years since my treatment). Little bit of damage to my eyes but not in any way that impact my life, where as before I was losing my sight and in horrendous pain. Hope they get you started on treatment asap. Sending , I know just how scary this feels

Bit anecdotal but the mother of a friend of mine had spinal tuberculosis maybe 20 years ago. I remember it being very difficult to diagnose - the family were really worried then as she was very sick and was also pretty old (80ish). Well she is still going 20 years on - she is now late 90s, might even be 100. Whether she has lasting damage as a direct result, I don't know. I sincerely hope you will recover well with no serious lasting after-effects. All the best.