Hi all, I would like to hear your experience on TB meningitis... My dad has been diagnosed with TB meningitis and was under medications for 1 month now.. He now have difficulty balancing which make walking difficult. He has to walk slowly with walking stick, and he has also changed to toe out walking. His behaviour has also changed and his way of expressing is also a bit different now. Doctors are suspecting side effects of the medications or celebral palsy, which is very worrying if its the latter..
Appreciate anyone to share similar experience please!
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ive never heard of this before, so sorry your father has got this he must have caught it from someone … good luck with his progress … keep us up with your news god bless him … take care x
Sorry to hear this. I have never heard of this type of meningitis but I believe that is because even though meningitis is rare, TB meningitis is rarer because most people are vaccinated for TB. The rates of TB in the US are very low due to the required vaccine and people get the vaccine very young. I don't know if he wasn't vaccinated, if the vaccine wasn't effective or recent enough for him, or if he was immunocompromised when he was exposed to someone else with TB. No matter what kind of meningitis though, the path to recovery is difficult, slow, and some things may never be as they were before. I wish you and your family the best.
You have to be ready for a long haul. TBM is a serious one. I believe It can be a latent TB just flares up when Immune system is down and finds its way to brain to cause meningitis. Usually the symptoms are weight loss, fever for months and later finding the classic symptoms of Meningitis. TB medication is for a long haul - probably for 6 months. it can go to 1 year like in my sons case of TBM. The side effects of TB medication is far worse than the medicine itself. Usually people adjust well in a month or two. TBM has about 50% chances of stroke. I am not a doctor, but my son went through it - with right side completely paralysed. Doctors changed to IV TB med and with steroids. DO not worry. I can tell you that my son after a year of going through hell is near normal today. regained speech, walking and movements. He can cycle, drive a car and does not have problems. But for a Meningitis patient - there is a new normal. He has small balance issues - though he can walk for kilometres. There is a good hope that your dad will recover back to normal. Trust the doctors and hope they do have experience. MY son was the first patient in the hospital he was treated in netherlands. If it was in india, my son would have had perfect recovery with no side effects. WE did transfer him to India after the initial period. This is to say that indian doctors have more experience on this treatment of tBM. Give him time and support him fully for atleast one year. Thats waht helps.
Thank you so much! Your experience and words really helps. I second all your experiences, the medication has so much side effects! My dad is 2 months into TB meningitis, and he has improved alot, although still having some balancing issues as well as his thinking. Pray that it gets better day by day.
Hi my daughter is one year and 6 months and was also diagnosed with tb meningitis we are in the hospital two months now she could walk or talk but is sitting up talking and moving now the only thing is her csf the protein is really high in her csf fluid doctors in my country is confused after trying many antibiotics how will this thing go down
Hi - Sorry she had to get this at an early age. I am not a doctor and so i cannot advise on the medication front. But fromwhat i know, she will get better and better. Please make sure that TB meds are not stopped without advice and TB medicines are what will get her rid of the cause of Menijitis. Since she is a baby. she has good time before recovering to normal. Care and support is what is required. Give her protein rich food, good care and understand that she will be slow to recover,, but will for sure recover. Please beware that TB meds have side effects that seems to look like a new ailment. Make sure to check with doctor any symptom being the side effect of med or not.
My wife has fever,headache,vomiting and light sensitive so I took her to hospital but doctor didn’t found anything . Her all report at normal like lumbar test , MRI ,blood test but still doctor told us it could be TB meningitis so they run TB medication but after 3 days of medicine my wife lose her balance and she told me everything around her spinning so we told doctor about this . But doctor also telling us what it happening they don’t know .If anybody have suggestions and what do I have to do about this please share to me. Thanks
It will. Trust me. It may take some more months to have his old thinking back. Meningitis messes with some parts of thinking and cognitive ability of the brain. With time it gets better. - time means six months to one year. Do not miss the TB meds. Do not discontinue without doctors advice. take a liver function test once 4-5 weeks or if he has problems with digestion/food intake. Give him time and family support - Balance issues will improve. Best wishes for his complete recovery. BTW- Which country are you from? Just curious.
Thank you so much for your advice! My dad has made great improvement looking back since he was diagnosed 2 months ago. He's able to drive and cook now, though he still need more practice. We're residing in Singapore.
Hi , How is your dad now? My dad is diagnosed with TbM and it’s been a month. He seems fuzzy and confused at times. Just wanted to hear some positive response
Hihi, sorry to hear that and I hope your dad is recovering well amidst the current situation... my dad is back to normal for quite some time now, he picked everything back up again, constantly learn to walk and he managed to walk properly within 1-2months after his diagnosis. He has been back into workforce for at least 6 months now, and he has gotten his logical sense back.
I hope my dad's improvement could bring you some positivity. Keep holding on, do not give up! It does get better although it seems bleak now. One thing that i learned from this experience is that do not give up on your dad, even though he might give up on himself (like what my dad experienced). It's not an easy route, keep encouraging him!
Thank you for the response. And I am glad that your dad has recovered well. My dad is out of the hospital. He was in hospital for 3 months. He got worst kind of Tb. Miliary as well as Tbm but he is recovering well. His mental cognition is back but he is too weak to walk yet. Hearing that your dad is doing well has given me so much hope. I think I just need to be patient and keep praying.
God bless you and your family and stay safe my friend.
Sorry to hear that, one thing I've learned is that this condition is unknown to many yet tricky where it really toils with your mental state. Be positive and keep encouraging your dad! Hope he get well soon.
Meningitis in general is a rough disease, I got pneumococcal meningitis in end of april, wasn't able to walk without helping devices for a month. I'm 28 years old, after being discharged after a month I still had to continue strong antibiotics for 2 months so 3 months in total. First month after discharged I walked like a grampa with a limp. But it improved daily and now I'm basically same as before tje incident. Able to bike with a bicycle etc. Ofcourse I'm still young so recovery is faster, but according to doctors full recovery will take from 12 months to 24 months.
I also used to sing the sentences after getting back home and just sing in general, which I didn't have as a habit before BM. Also messing up the syllables in words and so on. And at first being out in the world I got panic attacks. Also lost my hearing for most parts in my left ear.
Happy to hear your father has recovered and is able to drive, thinking will normalize and so on but everything takes time. Alcohol in higher amounts and in general is a no no. Also smoking is no no.
In May of this year my dad age 61 was rushed to the hospital for what they thought was a stroke. 2 lumbar punctures and 2 weeks later he was diagnosed with spinal Tb and meningitis. He was transferred to a rehab center in July to help him learn to walk again as he was unsteady from being hospitalized for 2-3 months. In August he ended up in the emerge again after they reduced his steroid dosage too quickly. After he stabilized again they transferred him to an inpatient tb hospital to focus on treating the Tb. After a routine X-ray (they were trying to discharge him) they found fluid build up in his lungs so he was transferred a bigger hospital to have the fluid drained. He had to have a chest tube out in, 3 weeks in that hospital and I don’t think they were keeping up with his medication as I found it spit all over the tv at least 3 times. When they finally removed the chest tube he came down with a fever that night and then the next day was completely lethargic. We knew something else was seriously wrong. He was on anti tb treatment for 5-6 months and according to their records it seemed to have been working. The ICU doctor told us to stop trying and to let him pass. She strongly advised against resuscitation should he need it. Said the tb medication wasn’t working and he will only suffer. We did not listen and asked them to save him to help us try and figure out why he changed so drastically once the chest tube was removed. He didn’t not need to be resuscitated but we did have to put him on a ventilator while they gave him anti seizure medication since it could cause his lungs to collapse. He was also on a broad range of antibiotics and blood pressure medicine. Literally the day before they removed the tube he was having normal conversations with us and ordering food for when we went to visit. After numerous tests and 10 days in the ICU we are now told that he had pneumonia and a stroke. His fever is gone but he is only minimally conscious now. He is completely off the anti seizure medication and blood pressure medication now. He also is able to breath on his own so in 2 day’s he’s getting the ventilator tube taken out. He will trail you around the room and look at me when I say dad but he does not respond otherwise. Won’t squeeze your hand or hold up a finger. It’s only been 4 days since he’s opened his eyes so I’m thinking he just needs more time. The doctors are saying they don’t know if he will be able to become fully conscious they are advising us again not to resuscitate if he needs to. They are saying he won’t survive. I’m lost as to what to do. I think him coming out of the coma and being able to trail us around his room is a good sign but to now ask us to agree that he shouldn’t have cpr feels like they are writing him off. They say he only has a 20% chance of surviving right now. I’m praying he can make it out alive and have a relatively normal life but from what the doctors are telling me I’m scared. I want to fight for him but I don’t want him to suffer if he can’t make it.
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