What's wrong?

[phrog]

Hello everyone.  Thank you so much for this forum, I am really learning a lot.  I had been diagnosed at age 14 with a pineal mass.  It is benign and has not changed much.  I am now 26, healthy and active,  and have been having symptoms for 3 months.  Symptoms include:  loss of balance, left side weakness, right side numbness, visual disturbances such as loss of peripheral vision in left eye, nausea upon standing quickly or bending over.  The balance and coordination problem has greatly affected my life.  I have been doing physical therapy and it is very difficult.  My neurologist noted that there is very faint hyperintensity in my cerebellum and is going to do a spinal tap on monday.  He thinks this may be MS.  So if it is, why are my symptoms so severe?  Could this be something else?  The mass is causing an "indent of the midbrain".  What else could cause these lesions?  Thank you all for your help.

[phrog]

Wow,  you all have been so helpful!  Thanks!  To Goodkarma5, thank you so much and I hope you will soon have some relief from your symptoms.  I wonder, what does caffeine have to do with the LP?  That's good to know.  I have 2 kids, so i've had a spinal block and an epidural.  The spinal block, they had to stick me several times to get the right spot.  I'm not really looking forward to this!  The neurologist seems very intent on lumping all of my symptoms into one problem, but I'm concerned that there may be 2 separate issues to treat.  I am so grateful for all of the support here.  I'll keep you all posted!  Thanks!

[Goodkarma5]

Hi Phrog,

I am sorry you are going through this. You are so young and have already been through alot.

First I want to give you some advice about the spinal tap cuz I just had one and wish more had been explained to me prior to going home.

Make sure you do lay back for as long as they tell you - the longer the better. drink alot of fluids and caffeine. Don't be tempted to get up if you don't have to. Have snacks ready,  a bathroom close, and you phone, tv, magazine already waiting for you.

I got the spinal leak but had rare side effects- tons of shocks running through my head and body. I got the headache too. The good news? I was ok as long as I layed back. It just took longer for my leak to close. That doesn't happen much so don't worry, but the reason I tell you is so you don't get scared if it happens to you. The shocks do happen to some people - and its not painful- just a nuisance. The ER doctor told me they would rather not do a patch on me because of the side effects, but the best thing they told me was - IT WILL CLOSE. The leak would close it was just taking me longer. So I went home and waited it out without having them do the patch ( another puncture to fix it). The leak closed after 10 days. I just wish I had not moved around so much when I got home. I didn't have all my stuff to pass time ready. I didn't arrange to have sub or snacks, or something easy to eat when I was hungry. I just was too nervous.  BTW - the spinal tap didn't hurt me, it was more wierd - but not too bad and it was alot faster than expected. Please don't let any of this worry you. This is so you don't get worried after - should you get a leak ( meaning the little hole just hasn't closed yet). The reason laying back helps is because you need the fluid in your brain for it to float and when there isn't enough it just kind of bottoms out and ouch. Plus you need to take it easy after, k?

I also wanted to share with you a bit of my story which still unfolds. The reason I think its important for you is because I had several things going on. I had so many symptoms too. Started when I was 28 ( I am 43 now). In the past 4 years I was diagnosed with a compression in the c-spine ( the neck) and needed surgery. I was shocked to learn how myelopathy ( spinal cord damage) could produce alot of the same symptoms of alot of diseases. I guess it makes sense because the spinal cord is hand in hand with the brain.  My prob? I still had alot of unexplained symtpoms the were not usually caused by the spianl cord. I will try to condense the rest :o)

I found out by using my mother's diabetic tester that I was diabetic. It shocked my Dr.s because I didn't fit the criteria at all. After much testing we found out I have a rare Autoimmune Type 1 Diabetes. My pancreas just decides to turn off and on whenever it darn well pleases. Stress and hormones are triggers for me. Still it was like - OK - another answer!!

My Neurological exams continued to get worse, and yes I have another compression and will need surgery however I still have more symptoms we can't explain. Thats when a brain MRI showed the 6 Brain Lesions- very indicitive of MS (due to locations of lesions). My Lumbar puncture came back negative, but I have some evoked potentials that came back with some probs - off and on.

So...what the Dr.s all agree on is that autoimmune diseases sometimes, and often times run together. Its very likely that when my body decided to start attacking itself, it decided to do it when and where. Meaning I have probably  my own - which I believe most of us do - our own versions of these diseases.

Just take a deep breath and don't give up. Read these post because you will learn so much and won't feel so alone in this. One step at a time.

Last but not least - try to keep a calendar and journal of your symptoms and days you suffer the most. I found that certain days of my cycle, I am so down for the count.  Because of this the Dr.s are now running saliva and hormal testing on me.Also if you ever need to be on disablity - short or long term - this diary will help you. Knowledge is power.

I hope you are ok sweetie. If you need advice I am here.There are so many really wonderful people here, and Quix is the most knowledgable ever. Try to pamper yourself and maybe get some ice cream - bon bons perhaps :o) for your test.

Hugs,

Karma kid

[sllowe]

Welcome Phrog!

Thanks for joining!

I don't know much about your dx, but maybe some others do.

I just wanted to say a quick hello to you and wish you well with you spinal tap on Monday.  Have you ever had one?

Sorry you are feeling badly, but we can help you through this.  Think you'll like it here.  Once I joined, I never left!

ttys,
-SL

[AMO]

hii Phrog,
(any relation to Frog? ha!)

i am asorry you have not been feeling right.
there are a few illnesses that could make lesions on your brain. This process of elimenation is rather stressful, when all you wnats to be well.

Did he say the 'indent' is realted to your neasua, balance and corrordination symptoms?
and have you been refered to a neuro-opthamologist? (if not i would sooner than later)
And did he take a GOOD medical and family history?

it is good you will be having a LP monday, maybe it will have some  kind of answers.
There has been some good advice in the forum here about taking  carebefore and after of a spinal tap.
glad you have come, keep faith amo