VM relapse after 1 year of recovery

[Vmstein]

I was Dx with VM in March 2019. It took me at least 10 months to feel at all normal again and was still having memory issues up to February of this year. The scary part now is that a month after the 1 year mark I seem to have regressed tremendously. I have severe muscle aches and all over fatigue, my speech is distorted again, and my memory is worthless. Does A N Y O N E have experience w relapse this far down the road? I never thought I would get better, and it seems just as I started to see the light at the end of the tunnel it got blocked up again. Any ideas or suggestions??

Jaime

[Kitsismimi1]

Hi friend,

My name is also Jaime, and even spelled the same way!😍

I’m truly sorry for the difficult ordeal you are going through 😓

I know all to well myself.

I’m exactly 2 years post VM myself.

I still have not yet felt back to myself or had the energy capacity that I had before VM.

I have had some days where I have felt pretty good and nearly normal, I love those days and I am so grateful for them🙏🏽

For me, they have not lasted and my struggle still continues 2 years later.

Honestly, I was feeling and doing better before the quarantine we are now all experiencing. My daughter and husband are now home full time and so the downtime/ability to rest, is not there like it used to be.

I am a stay at home Mom to my 5 year old daughter.

So, I’m very fortunate to be able to not have the stress of making it to a job each day and that is good. I could not do it in my life post VM.

But staying home, and the nonstop care of my family, home, cooking, cleaning, and laundry are not easy either.

I have to take a 1 hour nap every single day after lunch, or I feel very unwell, the next day too!

It’s really baffling to me that this can cause so much havoc on our life and for so long afterwards...

I have had a very hard time accepting and coping with it all.

I know EXACTLY the feelings you are experiencing about relapsing/regressing.

I am experiencing them as well these past 2 weeks.

It terrifies me that I am coming down with it again!!!😰

But, that is rare, and I think when we are doing too much, many of the same symptoms return.. it IS so hard!!

Many people on here have recovered very well and live full lives again.

I hope you and I will be part of that blessed group 🙏🏽

This is a great community of people here that are a great support to help you through your hard times.

One very important thing I wanted to share with you is that your body takes a HUGE blow after having something as severe as VM.

I have been to several doctors/neurologists/specialists in my last 2 years..

They have no idea really how to help you or what to do.. I have been very discouraged with that.

I can tell you that I had some very extensive blood testing done and found extremely low levels of many necessary vitamin/ nutrient deficiencies.

I have felt better since taking prescription grade supplements to help build my body back up.

Magnesium, vitamin C,D, Iron, zinc, multivitamin, probiotic, fish oil, turmeric, alpha lipoic acid, vitamin B complex, and a spectrazyme enzyme tablet with each meal to increase consumption of needed nutrients.

I think this is something that is often overlooked with doctors on getting your body back to good health. (Intense blood tests)

You cannot get it all from daily intake of foods.

I can tell you my health has improved from taking these each day.

I’m here to talk if you need support.

I know how lonely this can all feel.

We just want our life back and to feel good again.

I do believe in time... you are going to feel much better!

Take good care and write anytime!

Jaime

[Rett15 in reply to Kitsismimi1]

I had BM September of 2018 8 days in Hospital 2 in ICU 7 months off work . I still have Leg pain when I walk are standing but the more I move the better it is I will over do it sometimes and pay for it But I keep on moving forward take my vitamin and prayers that God’s will get me though this. So good luck and keep trying God got this.

[Earthfox20 in reply to Rett15]

BM for me 20 months ago in Sept 2018. Lucky to to survive. I’m deaf, doubly incontinent, have impaired vision and immobile and need hoist to transfer between bed and wheelchair. Also have neuropathic pain in my legs which at times is unbearable. Seems that damage to the nerves differs but nobody really knows how to treat. All medication is tried and played around with but no improvement and left in a permanent drowsy state. Sorry, realise this isn’t a very positive reply.

[Rett15 in reply to Earthfox20]

Thank you for your reply I’m sometimes want to give up because other do not understand the pain we go through I cry a lot when I’m by myself but I’m keep telling myself to believe in God it will get better!!!