Time sensitive, please reply

[Amrita-A]

Hello all,

I am going to see my family physician tomorrow morning regarding the debilitating and distressing symptoms I am having 4 months after VM.

I suspect she will try to pin it on depression (which I have not been diagnosed with). I have mostly given up my social life, not because I don't feel like it, but all the must dos take more than the energy I have. It feels like each day robs the energy of the following day. I am an active person, but physical activity wipes me out entirely.

My brain did not go back to being able to think and comprehend in the complex ways it was able to prior.

My question is:

Is there any form of test or functional imaging that will definitively show my doctor that there is something very real wrong?

Even just trying to type a message like this is now extremely difficult to do.

Wishing you all well.

Amrita

[kikisan]

Hi Amrita,

I was not diagnosed with VM but I think I had it from one of the viruses that I tested positive for in my bloodwork in March (CMV, EBV or Dengue) and/or mycotoxin poisoning. I am still experiencing debilitating headaches, brain fog, tremors, nerve pain in face and limbs, weight loss...if I could do a SPECT scan I would. I am going for an MRI with contrast. I have already done a regular MRI. My neurologist said it’s likely going to be fine but that she sitting her Ts and crossing her i’s. A lumbar puncture may follow to see if there are inflammation markers or pathogens in my CNS fluid. I understand that some inflammation is not detectable on MRI’s - doesn’t mean it’s not there and causing problems. I really empathize with you. I was highly functional and very fit in January 2018 when all this started. I am struggling to recover still. All the best with your appointment.

Kiki

[Amrita-A in reply to kikisan]

Hi Kiki,

Thank you very much for your reply. It sounds like you have a doctor who is on the ball and cares very much.

I didn't know they would do a lumbar puncture so long after the fact. Good luck for your recovery. I'm interested in hearing about people's recoveries and how long it takes, what symptoms linger and how they cope with it.

Posters have spoken about the tremors and I find that quite interesting as I play viola in an orchestra and not only is my brain not functioning properly, but I have a good deal of shaking going on which is very noticeable and embarrassing when drawing a bow across a string. It is hard to not panic when I can't hide the symptoms. Even on my own, I get alarmed at not being able to understand a utility bill and then I get all panicky because I am so confused. Keep me informed about your progress!

Amrita xo

[Jonad724]

Hi Amrita, I know very well the struggles with doctors so I hope I can help. The question to ask your doctor is how many patients they have treated with VM, don't be fobbed off by the usual stuff they come out with about recovery from meningitis takes 2 weeks and VM is never serious. Actually get them to tell you how many people they have treated with VM and if it's none ask them how they can be so sure that the after effects are not from VM. Since when does depression cause the after effects you are experiencing, Take the Meningitis Now VM leaflet with you, the page on VM is here: meningitisnow.org/meningiti... and you can get the leaflet here: meningitisnow.org/documents...

Both these resources will explain how VM affects some people and for how long the effects can last, for some like me, life changing. Good luck. Thx. Jonathan

[VMroom in reply to Jonad724]

Great advice Jonathan, I had to take those leaflets to my GP too.

[kalirachi in reply to Jonad724]

I think one of the problems is that doctors are quite willing to admit that they don't treat patients for viral meningitis as there is no treatment available other than all the usual stuff of getting plenty of rest, drinking enough fluids and maintaining a healthy a diet etc. As far as the long term after effects are concerned I have consulted my own GP and a few other consultants over the past two years regarding many continuing problems including brain fog, headaches,constant dizziness and imbalance, noise intolerance, continual aches and pains, tremors and the list goes on. The advice generally from all of them is that you just have to be patient and hope that the damaged nerves recover or that the brain will find ways of working around the 'insult' it has been subjected to. The stock answer from all of them is anxiety and depression can slow any form of recovery and they are all therefore quite happy to prescribe drugs for this although it is thankfully the one thing I have never suffered from! What they need to prescribe is some medication to help me cope with the frustration of listening to so called specialists who haven't got a clue and are trying to get you out of the door as quickly as possible.

[Amrita-A in reply to kalirachi]

Hi,

It's been a long road for you, then, as well. I suppose 4 months is nothing compared to two years. It's just that I have not seen any progress over the past 1.5 months or more. If this is my life, I find it hard to accept. It is debilitating. I can't function to the level I want and need to. The one thing I will not do is go on any psychotropic drugs as they just aren't for me.

Good luck and please keep us posted.

Best,

Amrita xo

[Amrita-A in reply to Jonad724]

Hi Jonathan,

Thank you for your reply. I did print off the survey to take to her, but it is still in my backpack! At least she is taking me seriously, as she knows me well enough to know that I am not an attention seeker.

She is ordering an MRI and some blood work, both of which I expect to be completely normal. Most unfortunately, my doctor is leaving her practice her to move up north, so that creates a lot of problems for me, the least of which is lack of continuity of care. I moved in March and am over an hour away from her as it is. I am unable to get in with a family doctor in the city I live in. Welcome to health care in Ontario, Canada. By the time the results are in, she won't even be in the practice to see them and decided what, if anything, needs to be done. She did approach it from an angle (took me three times to type that word) of depression/anxiety and I told her clearly that if I have those symptoms they are a by-product of what I went through and not causal.

I'm so glad you are here to inspire and assist us.

Best,

Amrita xo

[Jonad724 in reply to Amrita-A]

No problem and glad you didn't need the resources, keep going you're doing amazingly well.

[Mads1975]

Hello, I was admitted for 3 months with TB Meningitis - I had MRI scans to confirm the diagnosis and they can show the areas of the brain affected.

Neuro-psychology would be a good area to be referred to

[Amrita-A in reply to Mads1975]

Hello and thank you for your reply.

How are you doing now? Thank you for the recommendation. I wish you well in your healing journey. Please keep us posted.

Best,

Amrita xo

[spouseM]

Hi Amrita, I wish I could answer your question, but I cannot. My very best to you in this. My husband had VM and sacral cranial massage helped him a great deal. Maybe this will help you.

Michelle

[Amrita-A in reply to spouseM]

Hi Michelle,

Thank you for your reply. You must be a caring spouse to be here on behalf of your husband's experience. How long has it been for him? Does he seem to you to be the same as he was before he got sick?

Other posters have mentioned sc massage. My problem is lack of funds, but I will see what I can read up on regarding it. Thanks for the suggestion.

Best,

Amrita xo

[spouseM in reply to Amrita-A]

Last year, nearly to the day, he came down with west nile as SM. Spent 1 week in the hospital. He is 100% back now, but it took a while. He feared loss of cognition the most but found he got all his brain power back! I am here because this group really helped me when I needed it, I thought I may be able to do the same for others at some point If nothing else tell them my husband in 100% now, so there is hope, and spreading the word abt cs. Sometimes those practitioners will barter, keep that in mind. My very best to you!

[Amrita-A in reply to spouseM]

It is really encouraging to hear that his brain function came back! I live alone and I do things like put things on the stove and forget about it, quite frequently. My brain is really struggling. I'm glad he recovered 100%. You both must be really thankful. Thanks for the encouragement.

[Packard]

Marita, I hope you are well. My wife had the same symptoms and it was discovered to be MS via an MRI. Make sure you get one.

May HE Bless You

[rohitcontra]

Hi Amrita-A,

The problem with the aftereffects of meningitis (both bm and vm) is that only you or someone who is affected with it can understand. When you tell them to doctor they tend to passively listen and somewhat not able to give a satisfactory reply. If you're suffering from low energy and extreme fatigue than test for chronic fatigue syndrome is available.

One thing you have to understand is that you can not recover from it in few weeks. It will take time. Let your body react first towards recovery. Don't push it against its will. What you can do now is to achieve minimum threshold so that you can start doing minimal work of daily routine. You will recover but very slowly.

I was not able to think, react, walk properly, and somewhat my brain was living in another world. When i was speaking i was not able to find correct words. Even watching movies and tv shows was a tedious task. I was not able to follow storyline and resuming them again and again. It was difficult to focus on almost everything. It's been seven months but i am not driving. I am strictly not confident about it.

When i am encountered with multiple information my brain simply cant process it. Sometimes i have to left my work.

And most important people don't understand it. As all this cant be seen from outside. Most of them think that its been seven months so i have recovered. But this is not true. Some of them thinks that its my excuse of not doing work. But i am simply ignoring them.

I know to achieve what i was before meningitis is difficult. Maybe it will take long long time. But with a positive attitude you can achieve that.

[Amrita-A in reply to rohitcontra]

Hello and thank you very much for your reply.

I absolutely did push myself way too much in the beginning. Every symptom you mention I also experience and I still have a lot of headaches and nausea. They always come together.

It has been 4 months for me and I don't feel any better than I did two months ago. I sure don't have the same brain!

Wishing you well.

Amrita

[Lippistix]

Please give my daughters success story a read!

meningitisnow.org/support-u...