Anyone here consulted a Neurologist and was... - Meningitis Now

Meningitis Now
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Anyone here consulted a Neurologist and was it helpful? Has anyone experienced stroke symptons like numbness?

menchild
menchild

I ended up in Emergency after an episode where I felt numbness starting in left buttock and slowly move up left body and face. It only lasted a few minutes. I thought I was having a stroke. CT scan, ECG and blood tests showed all normal. I wonder if it is associated with Meningitis that I contracted on 31 August. I have constant daily headaches. Thinking maybe a consult with Neurologist? Your thoughts would be appreciated.

37 Replies
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Hello menchild

I’m sure that was really frightening to go through. I suggest you do go to a Neurologist. I thought that was something that everyone have as a follow-up after having Meningitis. I had Bacterial Meningitis in July and after being in hospital for 7 days then being sent to a Skilled Nursing Facility until August 3. I had a rough time but I feel much better. My gait is still off a little but I think you will have many strange symptoms as you recover but give yourself time to recover. Even if everything is “normal, and the symptoms continue after seeing the Neurologist, don’t stop—continue seeking help.

Take care.

Thank you Princess123 for your response. I live in Australia and I was discharged into care of my GP who thinks I know more about this illness than he does! I will get a referral and go see a neurologist. 👍

I had bacterial meningitis 11 months ago. I just finally had a neurologist appointment last week. I have some numbness on the left side of my face , tinnitus and head aches and some memory problems. I'm getting a brain MRI tomorrow and a 2 hour cognitive eval in 2 weeks. Yes PLEASE ask for a referral to neurology. I've felt like no one really "owned" my care. We are our own best advocate.

Thank you. I got a referral to see a neurologist after another episode of numbness in left leg and arm today. Hopefully I will be assessed more thoroughly.

I had stroke like symptoms too, on the left side on my body mostly my face. Went to the emergency and was diagnosed with Bell’s palsy. I’ve been to both a neurologist and neurosurgeon. Definitely worth going, had a follow up MRI and have an arachnoid cyst and some scarring. Now I will have a follow up MRI every 6 months to check on the size of the cyst, I’m glad I ended up seeing both doctors. Good luck

menchild
menchild
in reply to Twhite9118

I feel sure that Meningitis is such a serious illness that contributes to ongoing issues with our nervous system. Thank you for sharing I dont feel so alone with my questions n doubts.

Hi hope you're feeling better. My husband over 6 yrs had been hospitalized many times for stroke like syptoms, in April he was complaining of constant headaches, end of April he was so ill, headache,vomiting un able to stand, total & utter confusion, loss of speech, I thought it was another ' episode's but he had bacterial meningitis. The road to recovery has been long & hard, but due to the meningitis we were seen by a new neurologist who looked further & deeper into hubby's past history, she thinks he may have a condition called functional neurological disorder or FND. Not a happy diagnosis but getting g a brilliant neurolgist has given us answers that we didn't have before. I wish you health, healing & answers to your problems x

menchild
menchild
in reply to Loopylou57

Thank you for sharing. Its so helpful. I am sorry that yr husband is so sick but at least you have answers.

Hello, sorry to hear of your illneas.

My daughter had Bacterial Meningitis B and septicaemia 3 years ago.

This August she had ‘an episode’ where she started to have pins and needles and numbness in her fingers and toes, over a couple of hours this spread up her arms and legs. Eventually even her lips were tingling.

I took her to A&E where they assessed her and eventually sent her home with an appointment to see a neurologist the next week.

After more tests that came to the conclusion it was a virus which her body overreacted to due to her previous meningitis. (I.e. they don’t know what it was).

This was though the most thorough exam she’d had since having Men B. She’d had follow ups with her consultant who was more concerned that she could get depressed or get ME than give her physical exams and investigations for the symptoms she’s been left with.

I think it’s great that you are able to go and see a neurologist so soon after having meningitis and I wish you all the best in your recovery.

menchild
menchild
in reply to MinkyD

Thank you. I do believe Drs dont really understand the long term effects of Meningitis and the effects on the nervous system and trauma to body. I had another episode today and it passed in a few minutes. I went to GP and they did ECG and checked my reflexes and told me I needed to take Aspirin to thin my blood and that I had had a mini stroke. I am

not convinced but now have a referral to see a Neurologist n an appt to have a heart echocardiogram tomorrow.

MinkyD
MinkyD
in reply to menchild

Sorry to hear you’ve had another episode. I hope you get some answers from the neurologist.

menchild
menchild
in reply to MinkyD

Thank you. 😀

I had similar left sided numbness affecting my face, arm and leg. Initially its sounds like stroke symptoms but combined with my other symptoms of severe headache, photophobia and stiff neck and CT and MRI normal meningitis was the cause. I saw a private neurologist. I now see an NHS neurologist and after 21 months I still have left sided numbness and pains and needles in legs and feet. He suggested functional neurological disorder following the virus. I hope your symptoms improve. Mine are finally reducing but it has taken along time.

menchild
menchild
in reply to Seacalm

Thank you so much seacalm. I have had 3 episodes in last five days of numbness on left side and all test results normal. I keep telling Drs that I think it’s from meningitis and they say no. I have a referral to see Neurologist but cant get in until mid Feb. i also have constant headaches stiff neck. I dont feel so crazy now that you have shared yr experience.

I, personally, declined to be referred to a neurologist. Not sure what help they could give me. I am like 9 1/2 months post diagnosis and still have brain fog, on and off numbness, tremors, muscle weakness, etc. I find the more I talk about it the worse it is. From everything I have read the only thing that helps is time and trying not to get excited in a good or bad way. This stuff stinks and we have to be pretty damn tough for us not to be driven crazy by the head games it causes.

Yes, I notice that as soon as I get stimulated I need to stop and be quiet. I think that prob a Neurologist cant do much either! I am taking homeopathic remedies n trying other natural healing n find that more helpful. Have decided U can only do minimal tasks need to respect this is a long convalescence! Rest rest rest n more rest! Thank you for sharing really appreciate your input.

I had this too. I woke up and the numb less was down left hand side into my leg as well as my face.

After my viral meningitis- I sat with a neurologist who said it was a sever migraine caused by the VM- and it’s not uncommon to get symptoms like this.

menchild
menchild
in reply to Ralphy101

Oh thank you so much for sharing this. Did neurologist give any treatment for this? I am coming to realise that I am not as well as I thought and need to rest a lot more and remove as much stress as possible. Also need to eat 3 meals at regular times each day and quality brain food!

Ralphy101
Ralphy101
in reply to menchild

Just rest - I was fortunate I was back to work after 7 days.

I would get dizzy spells every so often for 2 weeks after. But slowly got back to normal.

I got VM Sept 1, 2019. I went to a Neurologist for other symptoms (not numbness); neck pain, upper back pain, random headaches, eyes burning, joint pain, memory issues, fatigue (and I think that's it, may be forgetting something).

They did a neuro test (just poking and prodding... no scans) she determined I didn't have any brain damage but she prescribed Gabapentin for the pain (300mg, a pill at bedtime). She said give it 2 week for it to get into my system... I haven't finished the first week yet so we shall see. She said it was temporary and I'd have a follow up in January. She said every one is different and recovery times are different. She said some symptoms might improve but others might never go away.... there's no telling what will happen.

By the way, I don't even like taking Tylenol. She said not to take stuff like that on a regular basis because once you come off of it, you get a "re-bound headache". Anyways, I'm going to give it a try. So far, the medicine seems to have helped with the burning eyes and sensitivity to light.

Message me if you have any questions!!

menchild
menchild
in reply to Eli_Acct

Thank you. I am no longer getting headaches and decided not to take panadol as it does eventually become ineffective n damages liver. I took homeopathic remedies and headaches now gone. But now getting light headedness, numbness and pins needles. Decided to rest a lot more, remove stressors and eat lots brain food. I dont think medical model knows that much about brain except it is a serious illness with different symptons for everyone. Will see neurologist but here in West Australia I have 3 month wait to get an appointment. Might be resolved by then. 🤣😂

Jmac999
Jmac999
in reply to menchild

I am also in Aust (Sydney) and have been having aftercare through my hospitals neuro team (was admitted for 1 week, then 1 week hospital in the home). They (and my GP) made it clear that the quickest way to be seen was to present to ED in the event I had unusual symptoms. Something to keep in mind for you.

I am 6 mths post Varicella Zoster VM... have just been started on meds to reduce headaches which have been getting worse again. (I think I’ve been doing too much... working c4 days a week). Totally didn’t expect this to linger as long as it has - otherwise fit and healthy 38 yr old but I’ve made significant adjustments to my life now. I am doing all the holistic stuff too and I do think it helps as I have so much more energy and am generally good - just if I do too much I have bad headaches that last for days (no pain relief works).

menchild
menchild
in reply to Jmac999

Thank you for yr reply. I have presented to ED - 3 times last week. They tell me they cant get me an appt any sooner than 3 months. I have slowed down n resting more, no more attacks. Am off work again. This is a serious illness and I am realising how vital rest is to recovery.

Eli_Acct
Eli_Acct
in reply to menchild

Not sure how things work in Australia but for my neurologist appointment it was out 3 months as well. I called every other day to see if someone had made a cancellation so I could get in sooner. Sure enough, sometimes they found a spot and eventually the appointment was only out a couple of weeks from when the referral from my doctor was done. Good luck!!!!

Also, I'm trying acupuncture next week to help with headaches, neck pain, upper back pain and joint pain. I am currently taking Gabapentin (one 300mg pill at night) for all this but it's only helped my burning eyes...

In short the answer is yes. I have unresolved small fibre neuropathy resulting in the last bout of aseptic viral meningitis. It has been now 3 years and the numbness continues. A neurologist is advisable to make sure the cause of the numbness and not take the work of anyone. Any infection of the brain or spine is serious indeed. Everyone is different and viruses are unpredictable in my view. My first encounter was with viral encephalomyelitis in 1986 in my late 20's. The suspected source flu or mosquito bite. It rendered me paralysed and in a coma for quite some time. That paralysis caused curling up of the joints and spine. The pain was excruciating. The coma was my body switching off to the pain. It was touch and go for a while. I had an older sister die from encephalitis which was indeed worrying for my family. The outfall has resulted in various autoimmune and recurring lupus meningitis which I get in place of flu during the seasons each year. Touch wood I have been spared for the last two years as the last time the nerve pain and numbness has never resolved. I have learnt to cope with the unrelenting pain and numbness and it is my new normal. You however may have a much more positive outcome if your immune system hasn't been weakened in anyway. Good luck and do see a neurologist, the Neuologist diagnosed my small fibre neuropathy. I have seen every specialist applicable. Because I now have Lupus and Sjogrens and Fibromyalgia I do see a Rheumatologist as he covers all three disciplines in the medical field. I see a Neurosurgeon as I do have an in operable brain aneurysm that I have to have an eye kept on. It is what it is and I wish I was never told about it to be honest.

menchild
menchild
in reply to Veba

Thank you Veba. I am only just realising how serious this illness is and have now slowed right down and resting more to give my poor brain time to heal. I cant deal with any stress, it makes my head go ‘funny’, so need to be quiet and basically can’t talk or interact too much. Have a 3 month wait to see neurologist.

I contracted cryptococcal meningitis sometime in the spring of 2018. Not sure exactly when as I started having out of the ordinary issues that medical officials couldn't really pinpoint. Then it hit hard the 1st of Sept 2018 as I've read this fungus can linger in the system for some time before it becomes noticeable. Anyway, it ended up causing me to have 2 small strokes... one was apparently caused by a high blood pressure event and many months later the 2nd one was caused from the fungus/treatment causing an insane spike in cholesterol/triglycerides. This illness left me near death in a matter of weeks. Lost all memory, thought process, balance/coordination, appetite and hearing. After it was finally diagnosed and treatment began I recovered quickly, but my hearing is still gone and may never recover, even surgically as I've been evaluated by an ENT surgeon. I mention all of this as I have found each and every day is a bit different and far from predictable. I still get some tingling/twitching throughout my body and assume it's just what damage was done to certain nerves and some may be trying to regenerate. What I've read on nerve regeneration would suggest I'm outside the window of opportunity for that to happen, but you never know as meningitis takes such a toll it seems as if typical medical knowledge/outlook barely applies to the disease.

So sorry 😐 to read of yr traumatic time with this illness. I am realising that Drs really dont know much about the effects of this. I am taking lots of natural remedies and trusting that I must rest a LOT!

Yeah that seems to be the case for many people. I can honestly say that the team of doctors I have are quite knowledgeable and didn't sugarcoat anything. I was told from the start that the recovery is a very slow process, can take several years to really get rid of the fungal infection and some of the side effects may linger indefinitely. Their main concern for me was getting my system stable, boosting my immune system as it was suppressed by the long term prednisone for my asthma/allergies so it can better fight anything like this in the future.

I'm sure there are some natural things to help and most definitely rest as much as possible. Of course it makes me feel lazy, but I know better at this point. In the past I'd get a boost of energy, do more than usual and it was like taking 1 step fwd, then 2-3 back and would require days of recovery to get back to 'normal'...

Yessss! I am discovering that if I do too much I get a set back and its none too pleasant.

I experienced bacterial meningitis in 2018 and have been experiencing numbness in my hands especially my fingers i also have occasional sharp headaches I have asked on numerous occasions to be seen by a neurologist but to get my doctor to listen is a mission he says it's not linked but I think it is I kind of know my body better than him and I know what it was like prior to contracting the nasty bug, go for it and insist on seeing a neurologist, good luck

menchild
menchild
in reply to Caroline-T

Thanks. I am beginning to think Neurologists cant help much either. Just taking it real easy n respecting my brain needs time to heal. ❤️

Eli_Acct
Eli_Acct
in reply to menchild

I asked my neurologist if I could go to an acupuncturist, for my pain. She said it was fine, it wouldn't hurt. Mind you, I had VM not bacterial .... either way, she wasn't much help except for prescribing pain meds and listening to me. She was surprisingly more empathetic than any of the doctors I have seen.

menchild
menchild
in reply to Eli_Acct

Thank you 🙏 I love all the empathy I have received here. I appreciate the time n care you have taken to respond. 💖

HiddenThis reply has been deleted
menchild
menchild
in reply to Hidden

Thank you 🙏

Hi.

Any update?

Currently in hospital for over a week

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