New member saying hello!
 

I am in my late forties...female, and have a lot of medical issues. The doctors, not knowing if they all fit into one basket.

At the age of 19, I began to get these massive headaches out of no where. One sided, pure pressure like a vice grip. They were insidious. No vomiting, but I would get pain behind the eye. Sunlight did not bother me. I could not stand. The opposite side of the face would droop and I would slur.

These headaches went on for months, then one day I just got violently ill. I was fine one minute, sick the next. Dizziness came on and I couldn't stand. I was weak and sweating and panicking. I was taken to the hospital. They thought I was on drugs. I was not.

That event changed my life because the dizziness and vertigo never went away. Only, doctors never new the reason why. No CAT scans invented yet no MRI.

Blood work was pretty normal. The only abnormality was this central and peripheral vertigo....but in the late 70's doctor's kept the info and records to themselves. I got called nutty by a few doctors.

I went on with my life, had children...the whole time feeling as if I had this horrid flu that never left me....AND the dizziness!!!

Fast forward 2004. My headaches just got worse over the years. I felt like killing myself, the pain was so severe. The doctors diagnosed complicated Migraine. I tried every medicine they had. Nothing helped.

It was my sister who told me to go the hospital when my headaches got severe. I listened. I did. During an episode my blood pressure was 176/117. That's high. The nurse tried to tell me it was because of the severity of the pain. They gave me morphine. It helped. My face was drooped. They sent me home the next day.

I started to get tingling in one side of my head and facial numbing on the same side. Sick in the stomach and very tired. I was having a hard time climbing stairs with the same side.

I tried to ignore it and did some 'pilates'. Bad decision. I was having a stroke.

I was hospitalized for a month a had a series of TIA's.

I need to insert, here, that prior to this, my PCP had done blood work to see if I had something called APS or thick blood...it came back positive, but not overwhelmingly so. I was sent to a hematologist who basically blew me off. It was within 2 months time that I had the stroke.

While in the hospital I also had a muscle biopsy because my muscles were very weak and they felt that I should have been on the road to recovery. The biopsy revealed "myopathy."

Blood work came back positive for lupus, but they are not sure if it is positive because of the muscle disease. Another biopsy revealed "death of the nerves".

So for anyone suffering for years without answers....keep hope. the answers are out there. Science didn't know about APS in the 70's when I was first ill.

I'd like to go back to some of the doctors and remind them that they are dealing with people and not experiments.

Thanks for reading my book.
I am looking forward to getting to know you!:)
ps...these are the highlights

Wow, you have been through a LOT! This is a very supportive neighborhood; you'll like it here!

Don't worry about writing books we all do it once in a while. So good you finally got some answers. Too bad you couldn't get anyone to listen sooner...you gave a lot of good information....take care and welcome!!

Hi,
Welcome to Neurotalk. I'm sorry to hear about the problems you are having. You will find many caring people here. If you need anything just ask, I will try and help you if I can.
Take care

Hi Bluemoon,
 

I am glad you found the forum. I think you will learn a lot here.

I knew when you started describing your symptoms of a stroke. I would say due to your age the Drs. blew that ideal off. I know a girl that has one at 5 so nothing is impossible. Some Drs. just don't believe that certain things can happen different then what they have learned.

My life was a lot like yours only I didn't start getting sick until I was 36. I'm 56 now. The Drs. blew me off too. I wonder also if they just don't want to admit that they don't know what is going on at times.

Hope you stick around. You will enjoy it here.

Ada

Thank you all for that nice welcome!

Ada, your right about my age and the doctors not thinking outside the box. The thing way back was, I only wanted to know what was causing my dizziness.

I had so many doctors say "you can't be dizzy all the time." I was determined to prove them wrong. It made me a strong person.

I have a great neuro now, and he is the one who said to me that I probably had a stroke at 19. I felt vindicated. I smiled at him and said "thank you!

My headaches are being controlled with 'topomax'. It was a hard medicine to get used to.

Thanks again for the welcome!

Welcome to NT Bluemoon! :Wave-Hello: Wow, you sure have been through a lot!

Ali, I have been reading around the boards and see that you welcome everyone! You are so young to be having trouble.

MS Cherokee, I think it's the things we go through in life that defines us as people.

Thanks for the welcome!

Hello Bluemoon and a big Welcome to NeuroTalk. WOW~ you really have had a lot to deal with. I hope you kick your shoes off and check out our many forums. Jump in anywhere you see fit and just really glad you found us. take care. :welcome_sign:

Thanks Daisymay!

I feel at home, already. :hug: