Looking for Support - Unsure and Scared

[CanSCG]

I am going to my Neurologist appointment tomorrow and am feeling a little scared.  

To give you a bit of background, I am a 35 year old female in Canada.  had a episode while sleeping that prompted me to see my family doctor.  She said she'd refer me to the sleep clinic and for my piece of mind send me for a CAT scan (my mother died 3 years ago from a Brain Tumour at age 58 - not a hereditary or familial disease ).  The CAT scan was to put my mind at ease that everything was okay.  

The CAT scan results came back and I got a call from my family doc - try not to be alarmed but there is something there and we want to send you for an MRI to determine what is going on.  Shock.  Terror.  Stress to the point of breaking - my reaction to this was awful.  I thought I had a brain tumour.  I thought I would die a horrible debilitating death like my Mom did.   I hope to not ever feel that level of stress ever again.  All I could think of was my children and that I would not see them live.  Awful.  My MRI appointment came in - the same day my Mom had a CAT scan and was diagnosed with Glioblastoma.  For me this was a sure sign of tumour.

In the meantime, I was recovering from pneumonia, but continued to feel unwell.  Finally my husband said, you are not sick as in a brain tumour, you are sick something else.  Go see your Doctor.  

I went to the clinic.  Told the doctor about the CAT scan and said I basically thought it was all in my head, but just in case here I was.  He went to look in my ears - stopped as soon as he touched me and said "you're really hot".  Took my temp and I had a fever.  Sinus infection.  So I really was sick; I got antibiotics and told him my story of the impending MRI with the date of doom.  He immediately called the hospital and told them my MRI must be rescheduled as no one should have to have an MRI to rule out brain tumour on the same day their mom was diagnosed with terminal brain cancer.  I got in for my MRI the next day.

MRI results come in - no brain tumour.  I cried tears of joy/relief and couldn't really hear much else of what was said.  Apparently something is wrong.  White Matter lesions and brain cyst.  Follow-up MRI in 6 months and to start seeing Neurologist.   Didn't care about any of it, as long as I didn't have brain cancer.  

Since the initial CAT Scan, my physical well being has been almost non-existent.  In the days that follow my sinus infection does not abate.  I am finishing up a 6 week round of antibiotics.  My hands are very fatigued almost to the point of not functioning.  This lasted about 2 weeks.  My bottom of my foot is numb and my feet feel weird.  My lips have been numb for months and swallowing is not always a sure thing.  Sometimes I just hold food or drink in my mouth until I can 'Remember" how to swallow.  

I feel like I have suddenly gone crazy and become a hypochondriac.  I have typed out my symptoms and my timeline for the Neurologist appointment and I have zero medical history going back to 2009 other than meds for my c-section and Iron supplements to treat fatigue.  Since September 2012 the list is a page long.

This is probably not even the right board to post on.  All I can figure from my Dr. Google research is that there is a possibility that I have MS.  I am age 35 and female and some of the symptoms fit.  

Sorry for the vent.  I can't distinguish what is a weird brain symptom and what is from the sinus infection.  I have been sick since September non-stop but before that was always very healthy.  I am starting to feel better physically.  Hands and feet are fine and my lips have feeling again so that is helping.  

I guess my question is what does the Neurologist do at your first appointment when you have already had an MRI confirming white matter lesions?  What can I expect?  Any advice?  My family doctor said the Neurologist would be able to diagnose my "white matter disease".  What does that mean?  

Thank you so much for taking the time to read this.  Thank you for responding if you can.  

[LisaJF]

I agree with Guitar grrrl (3 r's eh?)

Breathe and one day at a time.  


Please let us know about how your appointment goes!

Lisa

[Guitar_grrrl]

Welcome!  OK, breathe!  Take things one day at a time, take care of life as you do every day.  I used "Dr. Google" quite a bit before I was diagnosed, but after a while I thought it was taking up too much of my life worrying about things.  

I'm glad your sinus infection is getting better, and I hope the sensory problems you mentioned (lips tingling, etc.) get better as you heal.  Wow - tingling lips!  My sensory stuff when ever I got sick was usually burning patches of skin on my arms or legs.  Of course, we're all different!

Keep in touch, and let us know about how your follow up appointments go.

Cheers,
Lisa

[amethyst7292]

You're not alone. I'm Canadian, & I know the fear u felt all too well (I was Relieved it Was likely MS v.the 'Others').
Just cos u can't c us, we are bonded thru this site. We are all fighters, & we will All send u good vibes.
I hope ur Appt. went well!
Pls. let us know!
:-) <3

[kadi1805]

they may not be able to dx you for awhile, you need to think about the positive things around you, and move on, if you think sick all the time you will fill sick. It took eight years to dx me with MS, it all started about white matter lessions, but there are many different things it could be. MS is very treatable, so think positive how far are health care has advanced.  Kathy

[vwick77]

CanSCG

I feel for you!  Hopefully you can get a answer quicker then later.  Sadly it takes many much longer.  I started to develop symptoms at 29 and still getting tested at the age of 35,  it can end up being a long road.  With that said, u have evidence on tests and physical symptoms so I hope they can give you some answers!  

Ths board is wonderful, came on it a few years back and now again for support and to listen to others stories.   You came to the right place :)

All the best to you and I'm so sorry about your mom

Keep us filled in on your appointment!

Wellness to you
Valarie

[CanSCG]

I will post and let you know how it goes!  I have been creeping on these message boards trying to figure things out and process what is going on with me.  Why do I suddenly feel like an 80 year old woman?  Why don't my hand and feet work.  Why are my lips tingling so badly it wakes me in the middle of the night.  I cannot imagine how people cope with a chronic illness with the grace and kindness and support I have seen on these boards.  This has been 3 months and I feel spent.  And I have been feeling better the last week.  

[lisaob1]

i have everything crossed for you for tomorrow..even me eyes and in fact..im actually quite cross with my boyfriend now if that will help...guess im just trying to say my thoughts are with you and i wish you loads and loads of luck........,please let me know how you get on...you will be fine...x

[CanSCG]

Thank you Maracamama!  That is really helpful.  I want to "know" what they are going to do.  It feels like there is so much riding on this appointment, but I just need to relax and know I probably won't have answers tomorrow.  Even if I want them to say you have x, here's a prescription you'll be all better tomorrow.  I do know that won't happen :)

I appreciate the run down on how the appointment will go.  It feels less scary to know what i am walking into.  I just don't know why this is happening.  I wish it would stop and I would get that magic pill tomorrow.

Thank you again for the support.

[Maracamama]

You sound a little like me in that I was 100% healthy until I hit 35 and then I started to fall apart (not to mention being Canadian also).  

I think there are a lot of things that can cause white matter lesions and the neurologist may have an idea what is causing it but there's a pretty good chance that you will end up going through a lot of different tests before you get any answers.  It seems to depend on the neurologist.  

From my personal experience, I would expect the neurologist to ask you some questions about past and current medical history, perform a complete neurologic exam and probably order blood work and various other tests.  

If there is a simple reason for the lesions that the neuro knows the answer to for sure, you may get a diagnosis but I wouldn't expect that.  They may be able to give you an idea of what is going on but that is probably the most you will find out.

It's been almost three years of various testing for me (very slow moving in my part of Canada) and I don't have a definite answer yet.  Probably MS is the best I've gotten so far.

Good luck with your appointment.  Hopefully you get answers quicker than I have and that it's a simple fix.  

Laura

[CanSCG]

Thanks lisaob1!  White matter disease is just white mater lesions that haven't been diagnosed yet.  Differential diagnosis is MS, but there is a laundry list of "maybes" in there.  Of course this is Dr Google speaking ;)  I am not a neurologist.

[lisaob1]

hi..can i start by saying that im sorry i wish i had answers for you...but i just wanted you to know that your not alone and im sure everything will be ok...although i dont know about this medical condition..im sure you will be ok and i wish you luck for tomorrow...with best wishes x