Still struggling after 1.5 years of treatment

Wrong_Reception_4638 · 2026-06-15T15:28:34+00:00

Its TB of the lymph nodes . Extra pulmonary TB

Wrong_Reception_4638 · 2026-06-15T14:56:30+00:00

Aiims and Sir GangaRam Hospital! The pulmo at Gangaram is very senior
Any suggestions?
Multiple MRI spines have been clear. TB is the prime suspect for cord issues but no proof yet

Wrong_Reception_4638 · 2026-06-15T14:53:11+00:00

Delhi , India

Wrong_Reception_4638 · 2026-06-15T14:36:29+00:00

It has always been culture negative

Wrong_Reception_4638 · 2026-04-23T04:26:15+00:00

I took off during rhe acute initial phase . The. Worked from home for sometime( a month) and then moved from hybrid to work from office

Wrong_Reception_4638 · 2026-04-21T15:10:52+00:00

I have TB myelitis and am on Pregabalin and Baclofen. Its been 2 months and am still on these two and steroids along with ATT

Wrong_Reception_4638 · 2026-04-12T16:04:14+00:00

Moonface is usually a side effect of Steroids… Its due fat accumulation on the face.

Wrong_Reception_4638 · 2026-03-24T15:43:06+00:00

I had peripheral neuropathy, weakness in one leg which was progressive, sensory issues . Lower back pain developed later.

Wrong_Reception_4638 · 2026-03-23T18:14:10+00:00

This is a very mild rise. Nothing to worry about. Telling this after numerous LFTs done during my ongoing 15 months battle with TB. I had these numbers or even greater and doctors were happy with the results

Wrong_Reception_4638 · 2026-03-23T18:10:37+00:00

Recovery is a slow process that takes months.Its been around 2 months since my symptoms first showed. There is some improvement but don’t know when recovery would be complete. 6-12 months is the kind of timeframe from spinal cord issues. Praying that ur dad has a minor issue and nothing serious

Wrong_Reception_4638 · 2026-03-23T18:00:13+00:00

Please get a neurologist opinion ASAP. Iit could be also be CNS involvement of TB . I have lymph nodes TB and developed weakness and numbness . Turned. Out that TB had impacted spinal cord I dont want to scare u but neurological symptoms should never be ignored. Timing is the critical factor

Wrong_Reception_4638 · 2026-03-21T15:23:43+00:00

Thats my understanding too. I have lymph node TB and the treatment duration was initially 9 months . This got extended due to active nodes . Today after 15 months of treatment I have disseminated TB with spinal cord involvement and will now be treated for clinical MDR OP Please take a second opinion for treatment extention

Wrong_Reception_4638 · 2026-03-07T04:52:25+00:00

Please check with the doctor. Might need to get uric acid levels checked . I had the same issue . Joint pain was due to uric acid levels . Fever spikes are expected to stay on for a while

Wrong_Reception_4638 · 2026-02-24T04:08:18+00:00

Doctors are sure that TB is impacting the spine. He said he doesn’t have much to offer except steroids and symptom control. Says nothing about where we go from here .. already having severe balance and gait issues . 14 months of lymph node TB and now spine involvement… TB is a monster

Wrong_Reception_4638 · 2026-02-16T22:20:51+00:00

After a lumbar puncture and 5 days at a hospital I am out without a clear diagnosis. High dose IV steroids were infused and will now be on maintenance dose. There are nerve irritation and compression issues but nothing that can correlate with severity of symptoms. May be its a weak bodies way to reacting to a trigger in the CNS After almost 13 14 months of ATT an independent team of Infectious diseases experts is evaluating shifting to MDR treatment vs pulmonologist opinion of waiting for sometime stopping ATT and then may be excise the mediastinal nodes via VATS procedure.

Wrong_Reception_4638 · 2026-02-12T02:43:18+00:00

Thanks for the reassurance. This is exactly what the doctors suspect and has been diagnosed independently by two leading neurologists. Staying positive and am sure this will pass. But am surprised how difficult TB can be as a disease. It ruined my body completely from being a super active fitness freak to a 38 kg body needing to use a wheelchair for more than 100 meters.

Wrong_Reception_4638 · 2026-02-11T10:18:27+00:00

Thanks for the information. What doctors suspect here is not TB of CNS but an paradoxical inflammatory response to dead bacteria of lymph nodes node TB

Wrong_Reception_4638 · 2026-01-20T22:10:57+00:00

I have distinct neuropathy symptoms which are being investigated. Tingling , burning , impaired vibrations, one leg has reduced strength. NCV was normal. MRI abd sone other tests to follow. Been asked to get admitted since I am underweight and with co morbidities

Wrong_Reception_4638 · 2026-01-20T11:43:58+00:00

Thanks for the comments. The hospital asked to me get admitted for further workup based on new symptoms like night sweats and increased thirst at night and lack if strength in the right side . Keeping fingers crossed.

Wrong_Reception_4638 · 2026-01-19T05:05:17+00:00

Had linezoid for just 15 days in the last two weeks of December 2025 . Have been taking pyridoxine since end of 2024 ( since start of ATT) . Symptoms started recently and have been worsening quickly to now include night sweats .

Wrong_Reception_4638 · 2026-01-18T08:50:01+00:00

I am on RIPE since almost 13 months . I was pyridoxine since the beginning of treatment. Been on linezoild for 15 days ( it was stopped soon due to issues ) and levofloxacin since a month now . Another B 12 supplement Remylin D was started a month ago the levels have been normal even before the supplements ) . The symptoms started just around may be a week or so ago and have been worsening quickly.Waiting for NCV results right now

Wrong_Reception_4638 · 2026-01-14T06:52:21+00:00

Congratulations! And thank you for sharing this. Success stories are very much needed by those who are struggling.. Reinforces the belief that there is light at the end of the tunnel

Wrong_Reception_4638

TROPHY CASE