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Referals this may help

Wed, 01/04/2006 - 16:57
Hi all. I'll start by saying I have had years of trying to get proper answers and care. I have finaly found doctors that are good and I feel confident in.It all started when I was sent to a phycologist who told me my problem sounded like seizures and that I should change neurologist.From there I went through many.I started getting results after seeing two epiletologists whom both had to leave for one reason or another.I was getting somewhere whith meds at the time, but when they left I was only getting treatment with meds through my g.p. when I began to learn that she did'nt now what she was doing(even though she claimed to be a neuro. previous to becoming just a g.p.)at one point when it had been more than 4 months since my levels were checked and I asked her to do them.Much to her suprise,it turned out I was toxic on both meds.One was 40% and the other 60%.The epival was meant to be kept at 20% higher but the lamictal which was 60% to high was not supposed to be(no wonder I was walking into walls).The lamictal had been slowly added by my second epiletologist who when he left felt confident that my doc. would be watching over me and the effects of my meds.Anyway it just goes to show you how important your doc. is.When all this was going on the nurse at my work suggested I get a new neuorologist again and recomended one.I then told my g.p. that I wanted a refural to him.It was the best thing that happened to me.He wanted to start over again and scratch all other info except what treatment I was getting.New EEG,new blood work and new mri.He asked whether or not I wanted to see if I was a candidate for surgurey(my epiletologist asked me this aswell if the new meds. he started did'nt work) as I had been on so many meds.that did'nt work,there was probably none that would work.This frightened me and I chose to go with adding a new one,that made 3.When I went back for my next 3 month appointment and there had still been no success he said that he was not specialized in epilepsy to give me the proper help I needed.Again asked if I would like to look into surgery.Saying we finaly had a new specialist again so I would not have to go to a different place for this type of doctor and the proper tests.If nothing else he could help control my seizures better.Imagine a doctor admitting that!I did like him from the beginning and found him very proffetional.When I went to this new epiletologist he too wanted to start from the beggining to form his own oppinion.I liked him from the start and felt very confident in him.He immediantly set up a veeg and was stuborn enough to keep me there 12 days.If there was no sezure caught we would do it again at another time.Fortunatly I had 4 the day before I left.He showed me and my husband the seizures that were recorded and we learned I now have two kinds,right and left temporal now,said it could be that the right learned from the left but needed to learn if that was it or if the seizure starts in left and spreads to right.He immediatly set me up with a different type of mri.In the mean time he stopped the clobazam saying that only works for 6 months to a year.Then wean off epival and change to keppra.He nkew the first time I saw him that the epival was causing all my side effects.Wow do I feel great and all my family and friends have noticed a big change in me.After more than 20 years I'm finaly getting somewhere!So because I have had so much success I want to,and hope others who are finding success do too,help other people here by maybe getting you all off to a new start in getting proper care.My idea is for us to share the names of our doctors who are giving us new hope.I will start. I live in Winnipeg Manitoba Canada.My nueroligists name is dr. Fast and my epilitologists name is dr. Aghakhani.I hope this can help someone and if it does please let me know.Good thoughts and smiles to all.

Comments

Re: Referals this may help

Submitted by Luff on Fri, 2006-12-08 - 23:25
Hi Colina, I also live in Winnipeg. I'm not very happy with my current neuro (actually I really dislike him and don't feel comfortable under his care) and was looking for a new doc. I searched for yours on the internet but couldn't find them. Where do they work out of? Melissa Winnipeg, MB

Re: Re: Referals this may help

Submitted by colina on Sat, 2006-12-09 - 11:59
Hi Melissa and welcome to the site. I know you will find the info and the experience of others here helpful. It is most frustrating finding or being directed to good doctors. In our city the first thing that is needed is a good GP because they are the ones who do the refurals. I can help you with this but realize that names should not be put here. Last night in chat it was pretty crazy, sorry about that, it is very rare that someones goes in and causes trouble like that. Then I had to step away for a bit and did'nt get back to you left. I hope to catch up with you soon, in the mean time write a little note in your blog or leave me one in mine. It helps to read about others here because you will probably find alot of common ground and i've found more than once someone else can put symtoms into better words than I could. This helps alot with explaining things to your doctors. Sorry you're having a rough time with this and I will help in any way I can. Smiles to you.

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