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Off to new neurologist today!


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I finally have an appointment today with a new neurologist! I only had two follow up appointments since I was released from the hospital! The doctor in NYC never returned phone calls. I spent hours, literally, hours trying to get through to a human last week to get copies of my records. I never did. So the new doctor will have to try if he wants to see them.

I just hope I can remember what I wanted to ask! :lol:

Wish me luck!

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Good luck honey.

I've never seen a single piece of paper to do with my SAH & I know there were lots as they were at the bottom of the bed in hospital.

But I know nothing about what size of anything - guess in some cases ignorance is bliss...

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Good luck Susan!

Try and remember that you have a piece of paper with you and peeking out of your bag or purse! Last week I went to my Consultant, very proud that I had prepared a list of questions beforehand over the days before and all written nice and large so I could see them. Only I forgot about my paper totally in my appointment!

Let us know how you get,

Alison x

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And whew! New guy seems much more interested in me than the last nightmare of a doctor! Of course, all that interest means a full exam. I guess I "failed" the neurologic tests.. something about my eyes not following and my tongue.. what is it with these people and tongues?? :lol:

He seems to think I've had something happen to me more recently, perhaps another stroke. So I have to spend the next several days getting every test known to man. Doppler u/s of my neck and head, MRI's of head, neck and spine, memory/cognitive testing, EMG's of my arms and legs, and angriogram of brain.

He's concerned because of my other non-brain symptoms. He suspects vasculitis (inflammation in arteries) from my mystery auto-immune disorder. He definitely thinks the brain hemorrhage is related as well.

He said he wants to track it and find the reason because in his opinion there's always a reason, doctors may not always be able to find one, but he thinks there should be a reason.

Even though he thinks there could be more wrong with me than I thought, I am giddy! To finally have a doctor want to connect the dots of all my illnesses these last few years is a relief! Of course it also all leads to a doctor telling me I have to lose weight!

I have gained 25 pounds in the six months since my PM-SAH. So what do I do…….stop in the Irish import store next to the doctors and buy some Crunchies and some Flakes and Jammie Dodgers!

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Good for you Susan, I am glad he was interested in you. I had my second appointment with my 3rd neurologist today. I liked her much better today than last time. I really was ready for a bad appointment.

I have to say I took the bull by the horns this fall as I felt I was back sliding and having some blackout moments in the afternoon at work. I made an appointment with a Neuropsychologist and she order neuro psych testing and I did poorly in some crucial areas of memory and attention. She basically ordered me to stop working and said I was destroying my already damage brain. It was nice to have some one finally be honest with me. After I had my report my GP said I should consider disability, my neurosurgeon said the same and that I need to do helpful non stressful things for my brain- both agreed I had Atypical Trigeminal Neuralgia and needed to see neurologist. So I did not have a 2 1/2 year cluster headaches from SAH or tumor.

I have cut way back on my life style and one thing I learned was neurologist are medical they do not help with the memory part and rehab so to speak. If it does not show up on MRI or whatever imaging they use it is not something they can do something about. The Neuropsychologist is great for that and helping you deal with deficits. But the neurologist I saw today was wonderful for a change. Geez they all should be wonderful, it should not be this hard to get good care. We also talked supplements, and she even drew a picture of my brain and showed me the damaged area and where the bleed, tumor was etc.. I knew that but it was nice for her to take the time.

Anyway good luck to you! Although I do not like my diagnosis I am really happy for having a few! At least I can make a wellness plan and move forward.

Keep going in the right direction and hopefully you will get the help you deserve. Maryb

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Susan,

So glad you found someone that cares. So many are there just for the money.

I know how you feel about the weight. I've gained 15 pounds. In the beginning I ate and did not gain weight and now the scale just keeps going up up up. Ugh.

I

Edited by iola
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I'm happy when you're happy. I also really needed to see my scans and records as I was a researcher in neurophysiology before my SAH. It took me 3 looks before I was convinced that there was nothing to be found and the doctors didn't screw up. Sometimes, you'll never get an answer to 'Why', but it is really more disconcerting not to get an answer as to 'What'. Anyway, many have SAH with unknown origins. Your doctor is right that an origin exists, but at this time, he may be unable to find one as it was in my case. I've learned to be at peace with it and no longer worry about it (most of the time).

I'm so glad mary that you got conformation of what you were already feeling inside...that working isn't working for you. I haven't worked because of this as well. I volunteer and have a very rich life doing other things. It is a different way of living, but it gels better with all my ups and downs. I do what I can, when I can and no one else is imposing another layer of guilt or responsibility that just would stress me even more.

keep up the inner search, I still am.

~Kris

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Someone who listens is SO important! We are not patients, we are people. Even though they have heard it all before, we have not experienced it all before. There are many things that are life changing in people's lives. When it happens we don't know so much...why it happened, what is next, what it means for the future. We need somone to listen and reassure us, but also to be honest. If they don't know, tell us.

Mary I am so glad you got what you needed. Life is too short, it should not be spent in pain and frustration. It should be spent with your puppies and your family!

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