Why don't Doctors recognise the chronic aft... - Meningitis Now

Meningitis Now

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Why don't Doctors recognise the chronic after effects of Meningitis?


Hi Everyone. So I'm sat watching the news and they are talking about the effects of 'Long Covid'. Doctors are actually recognising the chronic symptoms patients are experiencing and planning how to improve their care. Covid has been around how long? How about Doctors listening to the Chronic symptoms experienced by patients following a diagnosis of Meningitis instead of making us feel stupid. Perhaps they can then label it 'Long Meningitis' so it can be recognised, talked about on the news and then perhaps you and I would all be/have been so well supported in our after care. How long has Meningitis been around? .... rant over

23 Replies

The problem seems to be the variety of after effects according to what damage has been done to what nerves in the nervous system. But I agree, there seems to be an absence of centralised expertise which is very frustrating.

I deliver projects for the NHS and so I get to talk to a lot of doctors and consultants. The issue is that they are taught in training that recovery from all sorts of meningitis takes 2-3 weeks and the only long lasting side effects are to do with limb loss etc. In particular they are told that viral meningitis is never any worse than flu and that everyone recovers with few or no after effects.

I had to have an argument with my GP about VM at a time that I could barely function. I asked him how many people with VM he had ever treated and after much professional bluff and bluster he admitted he had never treated anyone with VM before and he was relying on his existing knowledge.

I am privileged to be a volunteer community ambassador for MN now so I have the opportunity to help campaign for better education.

kalirachi in reply to Jonad724

Your posts sum up the situation very succinctly. In an ideal world doctors would receive more training. The chances of this ever happening seem ever more unlikely. Meningitis Now and the dedicated efforts of those like yourself provide a valuable lifeline for so many of us.

See my post CoVid or Meningitis Pick One or something like that. The after effects of meningitis are virtually ignored. It is a brain injury and I understand there is no cure...just learning to adapt and hope it keeps getting better. It is soooo frustrating that all the health care professionals don't acknowledge the after effects. Just acknowledgement would help. I KNOW I have to try to stay positive and help myself, but geesh, at least say it happens and don't try to tell patients they don't have after effects. We are NOT crazy or overly sensitive or lazy. I freaking hate this.

Thank you. You have recognised the real problem.

Thank you all for your comments. I work for the NHS as a Chemo Nurse. I am well aware of training issues and what Doctors are taught. The real problem here is that patients are not being listened to. Doctors will have been told initially what to expect symptom wise from Covid. This has clearly changed as Doctors and Specialists have witnessed and listened to patients about their symptoms. It should be no different for Meningitis .

Good post. I’ve had the after effects for two years, very uncomfortable. Nobody really wants to know. 30 pills a day but not eliminating the discomfort. I try to report my symptoms and they cut off my communication channels.

I’ve been diagnosed with fibromyalgia since getting bacterial meningitis at the beginning of the year and it has been linked to the brain injury . Currently trialing medical cannabis seems to be helping with the pain. The after effects can get better you just have to stay positive the body will eventually heal. I agree they have little knowledge about the long term effects they tend to brush it off because they just don’t know when you ask them.

I Hope you get better.

One of the problems seems to be that despite hardly going to a doctor before meningitis after you have had it you are accused of developing hypochondria and being unable to access your own body - go figure

Thankfully I had a student GP care for me for several months and I was teaching her! She was so sweet and compassionate. Other GPs hmmmm at least they believe me! I also rarely visited a GP before BM. I have found alternative therapies very helpful, especially Bowen therapy which has eased my body pain and headaches in only 2 sessions. Homeopathics too. GPs have a limited bag of tools to help. The medical model is just one modality of health care. I have taken the role of advocating for my own health care and expanding the repertoire of treatments.

I agree. I have had so many doctors tell me that I was wrong. I must have something else. Was I sure I wasn't depressed? Ugh. Seriously aggravating.

Emerald8888 in reply to Chri5ti

I was also put on anti depressants when this was not the root problem.

I have been thinking exactly the same! I still have many issues after BM in Feb 2017, nobodies interested! Not my GP, Neurologist, the eye guy or the ear guy. I have headaches...every single day. I lost most of my hearing in 1 ear and some from the other. I had some treatment for 'ear crystals' which helped the dizziness and nausea but that has returned and I can't get another appt due to Covid restrictions in hospital? I lost the sight in 1 eye and the other is affected too due to double vision. When I left hospital after 3+ weeks, 12 days in HDU, the rest in a ward, I couldn't see at all unless I lifted the lid of the eye that works (sort of) I could barely hear, I couldn't walk without a frame. When I got home, I couldn't go to the toilet, shower, dress or feed myself. I have come a long way, with the help of my husband, but 3 + years on I still have issues and can't get any recognition let alone help. Your post Emerald 8888 was spot on! Thank you x

Emerald8888 in reply to Eckybabe

Thank you for sharing your experiences. I hope things gradually improve for you x

So so soooo true!!!

I am a GP, I had viral meningitis , it was soo much worse than I’d been taught. I had headaches and memory problems for 6 months and still suffer with anxiety. My husband who is a doctor - medical consultant was shocked by the effects too. Really need to get the message out to the medical profession so they can support people

Thank you so much for sharing your experiences and I hope you are recovering well. This is my point. It all comes down to Doctors, Consultants etc really listening to what the patients are saying.

I contracted VM the end of May 2019 and was hospitalized June 2. I had sepsis, which resulted in kidney and liver failure. I was transferred to rehab the end of June, and finally want home July 12 with home health care and physical therapy. I have mostly recovered but still have lingering blurred vision and occasional balance issues. We live on the top of a hill and whenever I walk up the hill, I get a headache. It doesn't last, but I wonder about it. But what I want to say is that my GP seemed to know nothing about VM, and on my first visit post-release from rehab, he asked me why I was there. I explained to him my lingering issues, and gradually (after obtaining my hospital and rehab records) he grasped the severity of my illness. It was obviously a learning process for him. But he was very surprised when I began losing my hair and I explained to him it was not uncommon. We can only hope the medical profession will become more aware and understanding of the aftereffects of meningitis. Best wishes to all of you.

Emerald8888 in reply to JLJB

Thank you for sharing x

This is exactly how I feel. I had VM in July 2018 and I’m currently in the hospital for the 3rd time this year with the exact same symptoms. I get these ‘viral infections’ around 4 times a year where I feel the exact same and they say it’s not related to the VM but it never happened before that. Very frustrating!

Emerald8888 in reply to Gm23

I was the same. Painful joints, breathlessness, so sooo tired, back, neck pain, sensitivities to light and sound. I remember the Doctor asked me to pick one thing. I told him my legs were sore. He had the nurse write a sick note saying 'unwell'. I felt absolutely humiliated.

Yes!! Mines are always listed as ‘headaches’ - and the same happened this time today.

Emerald8888 in reply to Gm23

It's difficult. People don't understand and you even question your own sanity at times.

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