Newly diagnosed but have tuberculosis

Hello, I was diagnosed last month (June 2022) after first experiencing symptoms from the start of this year. These were diagnosed by my GP in isolation as Bells Palsy (twice) and Carpal Tunnel syndrome along with experiencing pins and needles in my scalp and feet which were unexplained. I have also been suffering with insomnia. The most recent symptoms which I experienced and lead to my diagnosis were numbness down the whole of the right hand side of my body, tightness in my abdomen, a weakness in my legs which made me stumble when I walked and reduced mobility in my left arm which left me unable to dress myself, use a knife and fork to eat or type (amongst other things). After meeting with a Neurologist who referred me for an emergency MRI and following a couple of nights in hospital I had a couple of MRI scans (one with dye and one without) and received the diagnosis very shortly after this along with a prescription for some steroids to reduce my current systems. I was relieved at the time and just wanted to go home and was so happy to be discharged. I was told that an MS nurse would be in touch shortly after but was given no further information at the time. Over the next couple of weeks I received emails from the hospital almost daily as the results of the many blood tests that they had taken came in. One unusual result came back which I have a follow up appointment at the hospital tomorrow for, which was that I have tuberculosis. I understand that it is dormant as I’m not experiencing any symptoms, however I assume that will need treating before I can start any MS treatment. My Neurologist has suggested that when I have a full bill of health his proposed treatment is monthly infusions of Tysabri. I am scared of having further relapses, particularly while I am not having any treatment currently for MS and the frequency that I have had relapses so far this year. I have spoken to my MS nurse but this was really just an introductory call and she has suggested that we have another meeting in 3 months, following which the meetings will be 6 monthly. I have managed to get physio to help with my rehabilitation and I now have full control of my left arm again, no longer stumble when I walk and have started a phased return back to work. Does anyone have any experience of being treated for tuberculosis prior to starting MS treatment?

I posted this a couple of weeks ago in the hope that I’d feel a bit less isolated and have had no response. Well that was a total failure!

Just want to say hi.

I have not experience, doctors are not even saying i have ms at the moment.

What is the treatment for tuberculosis?

Hi @MrsB1 don’t feel disheartened. Lots of users read posts but don’t reply, although no one initially replied to your post, you did get 80 views.

Honestly not all of my posts are replied to. It might just simply be that what you have asked no one has experienced, I have certainly not heard of anyone with ms and tuberculosis.

Hopefully your next post will resonate with more.

How you feeling now?

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Hi @TeddyBear1,

Thanks for connecting with me. I am on a 4 month course of Rifambicin, which is an antibiotic to treat the tuberculosis. It needs to be treated before I start any MS treatment as that will suppress my immune system which makes the tuberculosis more likely to wake up. The tuberculosis treatment can damage my liver so I need regular blood tests to check my liver function and if I have an MS relapse the tablets I’m on reduce the effectiveness of the steroids I’d be given so would need a higher dose so I’m hoping that this doesn’t happen.

I hope that you are OK.

Yes, I understand the process. My daughter was going on to biologics and had to be tested for tuberculosis before hand.

The last thing you need to do any to put your ms into a spiral. So although, a pain in the proverbial backside, finish your antibiotics for the tuberculosis and get the much needed treatment for you ms.

All the best :blush:

Thanks for your message @Rogue. I am feeling OK, the antibiotics aren’t making me feel any worse. Just waiting for blood test results to make sure that they’re not adversely impacting my liver. Fortunately I am recovering well from my most recent MS relapse, which is when I was diagnosed, I have regained the use of my left arm but am continuing with pins, needles, numbness and trouble swallowing. Still getting my head around it all, especially losing my independence through having to give up my driving licence. Hope that all is ok with you.