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 .

Thank you so much for the posts !
I'm really hopeful about prognosis now it's been diagnosed.

I've been suffering for 20 months but I feel so lucky it's been spotted by my wonderful switched on opthalmology doctor .

I suspect I've had it years - dormant . I became symptomatic when I had to move house so I guess stress played a part . It's been downhill since then .

I hope your hospital appointment goes well today

Take a list of questions with you, make lots of notes - not knowing is really stressful

Do come back and update us, we're rooting for you

Wishing you well for today's appointment and your future treatment.

While I can't offer any insight into your diagnosis, I can say that I have been under the care of an infectious disease consultant for the last two months and rhey have been magnificent. I've had clear and concise information, good support from their team and timely updates on my progress. I hope that your team provides great support too.

How did you get on @penelopepipsqueak?

Hi
Well , I've lost visual fields .

I need to begin treatment, opthalmology consultant says the swelling has gone down (it was immeasurable 2 weeks ago as it was off the scale ) but he says it will just pop up again somewhere else .

Rang the infectious disease consultant and his secretary doesn't work Friday or Mondays.

Later tonight got a text alert for an appt with respiratory but it's a month away . That's absolutely ridiculous. I've no respiratory issues, and the opthalmology doc says I've tested positive so treatment needs to start because they might never find out where it is in my body . I've got elevated protein levels in my cvf fluid which he says means something is going on in my brain . He says my body is fighting but it will pop up
Somewhere else and now my sight is lost !

Frustrated at min . I'll be ringing infectious disease consultant secretary Tuesday when she is working. I cannot wait another bloody month .

Oh good lord, how utterly frustrating. Lots of good luck for progress on Tuesday.

On the plus side, you've got a definite diagnosis and are now in the system (which is creaking, but still there).

Have some well-deserved after a stressful day.

Thank you . I am very frustrated tonight . I was in hospital again today for over 4 hours . Went to amu to ask where I was in system and they said they'd book me in but would be in for a long wait and friend who drove me had to go - some political shore was going on there as they said my opthalmology doc could have just rung the infectious disease doctor as he was in today , I said he told me he was just monitoring my eye and said it wasn't his job - nurse said he does that all the time so was welcome to wait another gosh knows how many hours in AMU if I wanted .

I couldn't drive because my eyes were dilated and friend who took me had to leave - so not an option.

So I'm in limbo .

Cos that sort of nonsense is exactly what you want to be dealing with when you've just been diagnosed with a serious health condition, are in pain, and can barely see.

Feckin' 'ell.

Yeah that's kind how I feel !

Thank you. Nothing I can do till Tuesday so I'll be sleeping till then !

X

Oof, you are going through it! How frustrating and horrible for you.

Just dropped in to say you should be claiming PIP - personal independence payment. It's not income related. It is, however, a gateway benefit to certain other concessions if you should need to start claiming ESA/UC.

You should claim from six months before you make your application, as you've already been incapacitated for a long time.

Hope you manage to have a relaxed weekend despite all this!

Thanks garlic

I'll tackle that one next week when I've talked the infectious diseases consultant.

Honestly I'm exhausted. I can't get through to the critical illness insurance and its really weird but it's as if while I didn't know what was wrong I've just battled on , working , trying to stay awake, trying to keep going and now I know it's like my body has said "oh fuck it " and given up !

I'll apply for pip . I've needed home help the last 6 weeks which I've paid for . I have literally been in bed , and I hired a cleaner because I just couldn't do anything (and that was before diagnosis!)

I appear to be completely incapacitated.

Steroids take some time to work. Exh lost his sight due to MS, had intensive iv steroids & then one day after he had finished the course, his sight came back as if someone had flipped a switch. Your eyes may be working, but the part of your brain the signals go to might not be ready to start processing the signals.

Yeah I'm hopeful but actually steroids can make it worse if you have infection and I afraid that seems to have been the case

Since the steroids my knee is twice the size it should be, my ankles are killing me and my elbows are so painful if I roll over in bed I wake up .

My limbs are also involuntarily jerking like I'm having some sort of electric shock - that wakes me up .

The steroids seem to have made things worse 🤷🏻‍♀️

Omg I'm just here for a major league whinge .

So yesterday the eye consultant says he thinks it's tv and I should be on treatment because it will just pop up somewhere else. He dictates another letter for an urgent appointment with the infectious diseases consultant.

Today the infectious diseases consultant rang me .

He doesn't think it's active TB . He thinks it's latent. He says he can't justify starting treatment. I've an appointment with his clinic at the end of next month and that's the soonest he can see me . He says early indications from the LP are negative- but has also conceded that that would only look for it in spinal fluid . I've asked a f it could be in bones or other . He says they will investigate it but I'll on be getting treatment for latent TB because if I start methotrexate I'd be immuno suppressed and latent tb could become active .

He actually thinks this is more likely autoimmune. I've not got another rheumatology appointment until next March !

So upshot is I've got 3 consultants now all arguing about the diagnosis.

I'm so fed up .

Oh good grief!

So you're going to be a lab rat while they work down all the different treatments and see what makes it worse and what makes it better? Then say, "Oh this drug worked, so it's probably this disease process"?

if you think work is the source then consider getting occupational health and/or hse involved.

I'll never prove it but OHU are already involved not that they have that much sway .

I've lost the sight in my right eye - I was hopeful if it was TB then it's treatable and would come back .

Now I'm not so sure and I'm back in limbo .

I'm so sorry you are experiencing this, OP.

It seems that you need some sort of multi-disciplinary team meeting to be held to discuss your diagnosis and treatment, but no one is taking responsibility and getting a consensus sorted.

Given that the treatment which is actually necessary might be time critical, I think I would be complaining, politely but persistently, to someone influential - PALS? the hospital's clinical director (if that's a thing)?

Email your MP - honestly they will light a fire under the hospital

I honestly think they are doing their best to find out what's wrong - I could just without all the infighting between the consultants.

I'm going to take my dossier of photos in with me , write all my symptoms down

I feel the tb doctor dismissed me without listening , but I've got a face to face appointment next month .

I've left a message with PALS , I'll see what f they get back to me

If the infectious disease consultant doesn’t think it’s active TB that’s worth listening to - they are hugely underrated physicians and TB is their bread-and-butter so they’d be all over you if it was obvious that that was what it was. TB can be a complete arse to diagnose/exclude and it can take some time to get to the bottom of things (historically took 6 weeks to culture TB… not sure if that’s easier these days though).

He's not even seen me - it seems to be a pissing contest between him and the doctor who thinks it is .

I've got a hugely swollen knee and have had for 20 months. My ankles also swell and hurt too much to walk .

My optic nerve has swollen

I had what I thought was pneumonia and I had ambulance out but I was too I'll to go anywhere - and was worried about leaving my dogs so I was treated at home with doxycycline, but I was in bed for a month and all my joints swelled up and went black .

I wasn't tested .

Now I've a positive blood test .

I want him to biopsy my knee and rule it out in my bones . That's all . But I feel he dismissed me before even speaking to me . He will see me in 6 weeks , but he says his intention is to treat latent tb - without even considering that it may be active in my bones .

I've got a lot of unspecific symptoms but I do still get night sweats, I've got undiagnosed synovitis in several joints which have caused me to lose mobility. And now I've lost sight in my eye . He says he thinks it's more likely auto immune but they've ruled out MS and I'm rheumatoid factor negative - can you get rheumatoid arthritis in your eye ?

I just feel completely unheard . The one doctor I was hoping would help me has dismissed everything out of hand .

I am sorry you are feeling so frustrated. I am a lurker, and cant find my old user name, so have just rejoined to reassure you this is not at all rare or unusual I am a teacher in London, and TB in any and all parts of the body crops up in schools regularly. I had a student with active respiratory TB at school a few years ago, and (thank you stupid, insane attendance policy) the poor kid inadvertently spread it around the tutor group before being diagnosed. I won't go into to many details, as court cases against the school still ongoing, but though this incident and others in my teaching career, have come across several students with TB in their spine, as well as skin, reproductive organs, bones, eyes, etc.

Its not nice, and has been a long journey for some of them, ( months, not years, once diagnosed) but all have recovered, One was left infertile though, apart from that, no long term consequences.

I'm actually stunned that given it is making a comeback in some areas that the tb doctor is so happy to simply dismiss the possibility that it could be .

There was an outbreak in my sons college when he was there.

All my senses are telling me that the "pneumonia " possibly wasn't pneumonia.

And with my job I have taken asylum seekers and illegal immigrants in my car to the appropriate authorities, as well as dealing with drug users , the homeless. I've come into contact with it somewhere because the blood test is positive, (and no I'm not blaming any particular faction of society but my risk surely increases with my job)

I just wish the consultant in infectious diseases could just suspend his disbelief for half an hour and actually listen to me

He scoffed at me when I said I'd had pneumonia last year and said ,my last X-ray (taken last week,!) was clear

Well it would be because I think it's gone from my lungs and spread to my bones!

I just don't know how I can get someone who has clearly made up their mind to hear me . If he won't test me , I'm stuck like this .