Re: parvo B19

[jennaris]

Hi I was diagnosed in April with Parvo B19 as was my children (all active infection)...

I had brain cancer as a child, and possibly have a scar on my brain from the radiation....on present MRI this appears to be a "brain injury, de-myelinsing disease or a low grade brain tumor" according to several opinions.  I saw an excellent Neurologist and he has dismissed it as a scar...but wants to do another MRI in January.

I have had ups and downs with this PVB19 course, have had great days, and then not so great days.

I have an incredible Family Dr, but she has reffered me to a rheumatologist who does not seem to know much about PVB19....

As of current I still have horrible paresthesia around my pelvis and spine, very sore and heavy legs, and some deep muscle or bone pain in my arms and shins.  I have a wierd cracking sound in my neck that feels like it is right behind my throat..I have horrible brain pain that feels so strange I could not even describe it...I have high blood pressure (which is not normal for me)...and I have sore glands on my head (where sunglasses would rest)...I can't sleep at night as my brain seems to not shut down....

I had a Parvo PCR test that came back negative...although I heard that our national lab uses a home brewed assay that is not reliable...

I have been told to wait this out for 6 months as it could be post viral fatigue...but the numbness and the pain in my body is something that I can not wait out...I am a Mother of 5 girls and have a wonderful husband whom I would love to take be normal for...I have also been told this is anxiety related, as the road to diagnosis was a bumpy one and I have been dx'd with lupus, Ms and having been poisoned...

I should mention that I have had a back injury where I fractured my lumbar vertabraes...and have had some arthritic pain over the years with this injury...

I am most concerned about the "brain fog and pain" that I have and the numbness in my pelvis (especially when I have full tummy or need to go to the washroom)

I would do anything to feel better and have been as proactive as I can...I am clinging to the words of the Neurologist that said "this is not Ms".....lets just see what happens...I am waiting for my child hood records to come in to see if the scar is in the same area as my tumor was at birth...

I believe that I am about 40% better than at the height of the virus...and I am grateful for that....but would like to get better soon.

Thanks in advance
Jenn

[SickMomma_PDX]

Jenn,

No words of wisdom for you here, but I was diagnosed with a Parvo infection in September 2007, after I'd been sick for three months including 8 days in the hospital, and no one knew what was going on with me.

Well, they still don't know what's going on with me. :-) Parvo-caused joint pain can linger way longer than most people realize, especially in adults. Then, of course, there's the fact that the virus can trigger any multitude of autoimmune diseases too.

My rheumy had read of case studies where Parvo-caused symptoms lingered for two years after the infection was gone for some adults. I'm on a Yahoo listserv for folks with lingering Parvo problems that has some people who got sick over a decade ago and still have problems. The good news? Apparently the vast majority of people who get hit hard with the virus gradually get better within six months.

I hope for your sake that the records from your childhood cancer come back showing the damage is just a scar. And I hope you get better MUCH faster than the six months your neuro wants to wait. I have just one young child, and I know how hard this is on a parent. (We had to put my daughter into full-time daycare when it became clear I wasn't going to get better anytime soon and I wasn't able to take care of her properly. :-( )

Hang in there, and keep in touch as you hear more from your docs, ok?

--SM

[Lulu54]

SB,
Thanks for finding that old post - that is so informative.  I will have to reread it ....

L

[slightlybroken]

Hi,

We had an old discussion on the forum about this virus you might find interesting. There is connections between this virus and other autoimmune diseases.

Here is the link.

http://www.medhelp.org/posts/Multiple-Sclerosis/They-found-Parvovirus-B19-in-my-marrow/show/614965

Quix gives Ada alot of info on this one.

[Lulu54]

Jenn,
Welcome to the forum here at MedHelp for MSunfortunately I know nothing about Parvo B19 - mybe someone else here can jump in and help?

I just want to make sure you know that someone read your post -I hope youll stay in touch and let us know how the tests proceed.

be well,
L