Brain infection?

[Momzilla]

Hi~

What a great forum!  I just posted the other day regarding a friend's siter and her very scary symptoms.  I got such a warm, helpful response, I thought I'd give you guys a try with my own health issues.  I hope I don't take up too much space and time.  (Sounds so Einsteinian -- relatively speaking)

I am 43 yrs old, the mother of five children.  Before my neurologic symptoms began, I was very healthy.  I suppose I still am!  Just dizzy, like the blond that I am...Here's the quickest timeline I can put together:

Jan 01  4 months after birth of fith child, had a very bad episode of vertigo.  Kept overnight in hospital for observation.  Couldn't stand, vomiting when eyes were open.

Felt absolutely fine

Jan 05 Had a very strange episode of not being able to walk well, speech was slurred, felt very odd.  I went to hospital.  They diagnosed me with myoclunus and referred me to neurologist.  Neurologist determined the episode to be a 'complicated migraine," although I never got a headache.  Put on medication for migraine prevention.  I had never had migraines before this.

Summer 05  Had cervical spinal fusion surgery -- very successful.

Sept. 05 Had another episode of the complicated migraine w/same symptoms.  Saw a new neurologist when first one put me on antidepressant.  I think he thought I was 'faking.'  

New doc put me on Topamax, after an EEG showed abnormal electrical activity.  He said it looked as if I was having absence seizures every few minutes.  I wasn't, of course.  He did a 24 hr. EEG which showed the same thing.  He ruled out PFO and gave me an MRA, and MRI, both of which were normal.

April 06 Had another episode.  Doc actually saw me during episode.  He was kind of stunned that it lasted for so many hours.  He increased Topamax to 200mg twicw a day.  I began having numbness in right foot, whch he attributed to Topamax.  

Summer -- Had about two weeks where I woke each morning with a migraine and vertigo at 4:30.  Even on that much Topamax.  I vomited every morning and needed to use an ice pack for my head, until I went to work in the late morning.  Needed help from my husband and older boys caring for the younger children in the morning.

Fall 06  Numbness and tingling increased, now in both feet.  (I have Raynaud's in my feet as well)  He did a NCV which was normal.  He started prescribing all sorts of medications for me, amd did a sleep study.  I have obstructive sleep apnea, although I am not overweight.  Much!  I have a CPAP machine now. Wasn't comfortable with all the medications, so went off all of them with the help of my internist.  Decided to see a neurologist my internist recommended.

Developed the following symptoms gradually -

Nystagmus (observed by my audiologist -- I wear hearing aids)
Dizziness and occasional vertigo (mild)
Numbness and tingling in feet and legs
Double vision when looking to the left -- right eye turns in.
Headachy each day.

March 07  Started to become weak in my legs.  Needed to sit on a stool in the morning to blow dry my hair, get ready for work.  I thought I may have a virus.

May 07  Couldn't walk out to my son's T-Ball field.  Legs were too weak.  I had to sit down on the grass, didn't think my legs could suppport me.

Two days later, while at work, couldn't lift my toes.  My husband had me call my internist, who sent me to the ER.  Everyone there asked if I had MS.  I was pretty scared, because I couldn't lift my legs off the gurney for hours.  The whole episode lasted about 20 hrs with the severe weakness.  I got into the new neurologist the next day.  

He suspected Transverse Myelitis, and did MRIs, which were normal.  He did a NCV/EMG which were normal!  He said I should see a psychiatrist.  I was stunned.  But, if something psychiatric was causing me to have these symptoms, that's what I would do.  

Saw the psychiatrist, who knew me from periods of post-partum depression.  He didn't think I was either faking, or had conversion disorder.  He thought I needed a very thorough neuro work up and testing for MS or a variant of ALS.  (Not the most serious kind)  He said, if it takes going to Mayo clinic, go there.  If Mayo says you're faking, I will PERHAPS enetertain the thought.  Had to love him for that.  Helped me feel sane.

Aug 07  I went to an MS clinic in my area, and the doc there spent 3 hours with me.  You know how when you go to the doctor you always feel fine?  Not this time!  I was at my worst, weakest.  And my cognitive function was deteriorating.  I needed to put a post-it note on my phone with the name of the doctor I worked for.  I kept forgetting it.  I was in bad shape physically and mentally.

He observed in me: Increased muscle tone in all 4 limbs
hyper reflexes, all limbs
Very bad postural tremor - RT hand and mildly in my head
Babinski's response in RT ft
Severe weakness in legs, mild weakness in arms.
Other various signs....

Because of my normal MRIs, he ruled out MS right away.  He treats mostly stroke patients, not MS patients he admitted.  He was intrigued by my case and ordered a PET scan (normal) and neuropsych testing.  Blood work was normal.

Oct  Three day episode of not being able to walk again.

I began to slowly improve.  He himself has Chronic Fatigue Syndrome, and suspected the same of me.  He sent me to his endocrinologist, who also spent a great deal of time with me.  He suspected hypothalamic dysfunction, and tested me with an Arginine Growth Hormone Test.  I failed.  I am deficient, apparently.  Pituitary dysfunction, not hypothalamus, as it turns out.

So, I went back to the neuro, and he said what he theorizes has happened to me, is that I had a BRAIN INFECTION without knowing it, and it stressed out my endo system.  Hence, the GH deficiency.  He has put me into the hands of the endocrinologist now to treat me for the deficiency with hormone injections.  (I'm sure I can get a baseball contract when Spring training starts!)  The neuro thinks I am in a convalescent period now, and should just continue with the hormones unless something else comes up.

I am glad they found the deficiency.  I know GH are controversial, but have decided to give the treatment a try.  I'm just feeling kind of in limbo still.  I wish someone had done more to rule out MS.  Even my endo says he has never had a patient with periodic paralysis, as he called it.  Or Babinski's response.

I'm sorry to take up so much time and space.  I just don't feel 'right' about my diagnosis.  Does this make sense to anyone?  Is it possible I could have had a brain infection without knowing it, and it could have produced all these symptoms?  Is the GH deficiency related or coincidental?  I just wish I could let it go.  I have two fine docs who took lots of time with me.  WHat more do I want?

Thanks for your time.  Feel well, all!

Zilla*

[Momzilla]

I was hoping perhaps one of the doctors would comment....

[Momzilla]

Hi, Jo~

Thanks for the help with the vitamins.  I'll checkit out.  I try to read up on how everythingis absorbed and such, but, there's only so muchtime in each day, as you know...

I had to look up "dura."  OMGosh!  That's crazy.  You are a lucky one, all right.  Wow. It's almost amazing all that has to go RIGHT for our bodies to function properly....

I hope you are feeling well, and that the surgery gave you some degree of relief.  I wish there was something more they could do for you.  

The MSforum is great.  Youngatheart is oneof my favorite people.  She has vision problems due to optic neuritis, so she writes in all caps, and I think all caps are easier for her to read, as well.  Feel better!

Kristin~  Hey, friend!  Thanks for saying Hi!  Yes, I'm still frustratedin Limbo here.  I guess I should just drop all this, but it just seems worth another look by another doctor.  I forgot that I made an appointment many months ago (before I got in to see my last neuro) with an MS specialist which is coming up in a couple of weeks finally.  I think I am going to keep it.  Just to hear histake on things.  If he agrees that the infection sounds right, I will drop it and move on.  My fatigue is coming back, but my legs are getting stronger slowly, at my new 100%, I think.

Sorry you're still floundering, too.  It's so frustrating.  At least your docs are taking you seriously, and treating your symptoms.  I hope it helps and you can hang tough.  Good to hear from you.

Take care!

Zilla*

[floridamom2]

up

[Joface]

Thanks for letting me know about the "youngatheart" person.....so she is on the MS forum? I don't think I've ever been to that one....I will check it out!  Jo

[floridamom2]

Hi!,

Jo:  I just wanted to let you know there is another person on the MS forum named "youngatheart" that has arachnoiditis and she will be going for surgery soon.  It may help you to hear what her doc's say also - she sounds like she has some good ones.

Zilla: I am so sorry you are still searching for answers that make sense.  I have also been told "it was probably a virus in my CNS" but the docs have no proof as they never did an LP so they are treating my Sx and telling me it may be up to 2 years before I get back to my old self.  I sure hope that happens and I don't get worse due to the f act that it I am not really being treated for anything.

Take care!
Kristin

[Joface]

I know, it's easy to get addicted to this forum, it is so interesting when people share information - and helpful, also.  Personally, I couldn't understand why my neurosurgeon wanted to do a lumbar puncture, but I'm glad she ordered it done. I also had elevated protein and elevated white cells, so she referred me to a neurologist and an infectious disease doctor....both, as in your case, tested me for numerous things, all of which came back negative.  The neurologist felt I had a form of meningitis, but couldn't be proved.  We went ahead with the surgery and when my surgeon was operating, she saw an area of my spinal cord that was hardened (the dura should be soft and supple). When she opened it, she discovered that it was hardened calcification in which nerves were embedded.  She "chipped away" as much as she could, but obviously needed to stay clear of the nerves.  She even called in two of her colleagues to look at it and neither had ever seen such a calcification in all their years of surgery. (Lucky me, huh?) Because she opened the dura, I had to lie flat on my back in the hospital for three days before moving, due to the possibility of a spinal headache.  In any case, it is now thought that both the calcification of the dura and my other diagnosis of adhesive arachnoiditis were responsible for the inflammatory process noted in the lumbar myelogram. So..in essence, I have a problem that no one can help me with - there's no cure, no known treatment, though it isn't fatal, only painful!

I don't have any answers for you, but I would suggest....be certain that the Vitamin D you are taking is Vitamin D3, since there are other forms that aren't nearly as effective.  Also, another good thing would be that if you are taking Calcium, try to use "calcium citrate" (such as in Citracal) versus "calcium carbonate", as citrate is absorbed more efficiently.  Most multivitamins contain calcium carbonate, for the simple reason that it's cheaper.

[Momzilla]

I should have said that I went off all medications except for the Topamax.  The newest (last) neuro took the dose down to 50 mg a day.  Guess what?  No migraines yet...

I alsotake fish oil very day for the cognitive benefits per the neuro and a good multivitamin with lots of D in it.

I jut can't stop!

[Momzilla]

Hi!

Yes, Lyme has been ruled out.  Good thinking, though.  No myelogram.  I have had some very out of the ordinary blood work done bythe endo, and all that came out abnormal besides the growth hormone was a Vitamin D deficiency.

My neuro did some wierder blood work, too, but we forgot to go over the results at my final visit.  He tested for HHV-6, cocksackie, things like that...  I will ask for the results for my internist.

The only other thing that turned out abnormal was when I went to the ERonce with trouble walking.  The ER doc said he wanted to do a lumbar puncture for MS, but couldn't justify it through the ER.  He did a garden variety LP, and the protein level was like 49, just outside the hospital's normal range.  The ER doc gave me a pretty good neuro exam and diagnosed me with dysmetria.  

I could go on and on...Someone stop me!

Thanks for your thoughts. How are you?

Zilla*

[Joface]

Did anyone ever think to test you for Lyme disease??  Or...did they do a myelogram or refer you to an infectious disease specialist for any further testing?  Jo