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anyone with narcolepsy & MS, ME or cronic fatigue syndrome

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anyone with narcolepsy & MS, ME or cronic fatigue syndrome

Postby happy2bhere » Wed Apr 21, 2010 9:55 am

HI all. Looking for anyone who has been diagnosed with MS, ME or cronic fatigue syndrome after an intially narcolpesy diagnosis.

I'm 34, had narcolpsey for 14 years & was officially diagnosed 8 years ago. I'm currently managing my symtpoms nauturally with regualr daytime naps as i had to give up work 3 years ago (your'll see why later!). I was previously on modafinil (sometimes up to 800mg a day) & antidepressants for the cateplexy.

After i had my second daughter 3 years ago, i started having an ever growing collection of strange symptoms. At this point i was still on the medication & put it all down to having a 4 year old & a young baby to care for, made all the more stressful by the fact i had no family support & a hubby that was working away from home for 5 weeks at a time.

The first noticable symtom was an immense fatigue that just didn't pass. I had of course felt this previously due to the narcolepsy, but there was absolutly no respite for weeks & sometimes months. I was & sometimes still am a walking zombie, i cant think, have trouble putting sentances together, have poor word recall & my memory is terrible (i sometimes shamfully forget the names of my daughters. Not just get them mixed up, but completely forget what both of their names are). I also have migraines, lasting days, nerve pain all over my body & slow response in my left leg (very noticable when driving). It was at this point that i stopped all medication, just to see if there was any difference. There wasn't & couldn't see the point in pumping my body with medications when there appeared to be no benefit.

My neurologist arranged fo me to have an MRI scan as MS is in my family, this came back clear. NOw i don't know what to do. My life is on hold, certainly can't work. GP doesn't seem to know what to try next & my referral with neurologist seems to have been ended & no follow app has been made. ME & CFS have been mentioned as a possible cause.
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Re: anyone with narcolepsy & MS, ME or cronic fatigue syndrome

Postby jasmin » Mon Apr 26, 2010 4:01 pm

Hi, happy2bhere! I'm sorry you didn't get any replies yet, try posting in other related forums as well. Hopefully you'll find someone who has some advice about dealing with your problem. Are you ok?
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I am sorry I am not on the forum as much as I used to be, if I do not reply to you quickly, please contact another moderator/supermod/admin as well.
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