Constant pain and difficulty with mobility

[Mimilondon]

Since having VM my mobility has been up and down. One minute I can walk, one minute I’m struggling. My arms are weak and my back plays up. I have been referred to a neurologist has anyone else had these continuing problems? Has anyone else seen a neurologist and did they get any answers? At present been stuck in the house since February and I’m always in pain. Can s as anyone relate?

[kalirachi]

Certainly can relate to this and many other problems after being hospitalized with VM in 2016. I had virtually no balance, couldn't walk at all with my legs just trembling and feeling like jelly. Constant headaches, dizziness and visual aura. Tinnitus and insomnia were other little delights! I saw two neurologists who were utterly useless to be quite honest. The first one diagnosed migraines and prescribed Amitriptyline which I refused to take, the second one was a professor of neurology at a top London hospital, he also had no answers and prescribed Sertraline, a particularly unpleasant anti depressant which would not treat any of the symptoms and leave you in a constant stupor. I politely told the learned professor what to do with his Sertraline. It took me six months with no help or after care to learn to walk again albeit with a very strange gait and weaving from side to side. I still have many of these lingering after effects and now realize it's pointless and extremely frustrating trying to get help from so called experts who really have as much understanding of the after effects of Meningitis as the average GP. I'm sorry about the pessimism, maybe you might have better luck than I did.

[Mimilondon in reply to kalirachi]

Hi there,

Thanks for the reply and sorry to hear that this happened to u.

I just don’t know what’s wrong or what more can I do, but I’m fed up with feeling like this mostly everyday. The joke is they say they have an appointment for me but currently not even open.

I’ve tried yoga and one day I seem better and then the next can’t move.

I feel sorry for my family and is worried about keeping my job but trying to be positive x thanks

[Topmanhughes in reply to kalirachi]

Hi there,

Sorry to hear that. But how did you get your balancing back as my wife has 24 hour spinning problem and her leg and hand starts shaking whenever she try to walk. She is diagnosed with TB meningitis thanks please give me some suggestions.Thanks

[Mimilondon in reply to Topmanhughes]

Rest and small stretches helps. I have a band and use it to stretch my legs around 5 times a day.

[Topmanhughes in reply to Mimilondon]

Thanks for your reply. What about 34 hour spinning. I don’t know is it because of medicine or something else my wife she is telling me that she feels everything around her is spinning because of that she lose her balance and cannot able to walk. She is still in hospital and they are going to do MRI tomorrow. Do you have to see someone else ?? Please let me know thanks

[Mimilondon in reply to Topmanhughes]

Remember her eyes and ears have been effected too. It has token me 6 months to get me were I am and the doctors said slow and steady. If she has glasses that can help. My ears were effected and I was of balance for a while. But now they are better and it has just took time.

Go back to the gp as it does help and they will check

[Topmanhughes in reply to Mimilondon]

Hi actually she is in hospital at the moment and tomorrow they are going to do MRI. No her ear and eyes are fine but she is telling me that she has blur vision . For your ear treatments where you been??What about the balance problem will those will recover on their own or do we have to do any else in your experience please let me know thanks

[Mimilondon in reply to Topmanhughes]

To be honest my eyes and head r from the nerve damage and I have a lot of physio. Take it slow and listen to them as she will improve but it does take time.

[Buckie3]

I am 5 yrs post encephalomenigitis & I still have issues but am able to manage. If I work longer than 6 hours I lose my cognitive skills, I struggle with maintaining my balance, I will also have head pain & anxiety. But I know when to stop. I have a neurologist for the past 5yrs. Because I had encephalomenigitis I had brain swelling & now have scar tissue in 3 areas of my brain which causes the head pain. I have a new normalcy, so I don't fuss anymore. I tolerate the pain, don't need pain pills, I just work through it. Its take time, your life just changed a bit. Be patient and find a good neurologist. Best of luck