New & terrified (as selfish as that seems)

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New & terrified (as selfish as that seems)

Postby Battlecat » Mon Feb 11, 2013 7:12 pm

Hello from Australia :)

OK, i'll try and make it quick. My mother got in contact with me recently to tell me that she had been told by neurologists that she most likely has MS. This is as the result of an MRI which showed lesions and an episode of numbness lasting 3 months, fatigue, an incident of feeling like she was walking on ice, plus noticeable cognitive difficulties. I myself noticed her constant slight twitching 7 years ago when i'd sit close to her or link my arm in hers.

We'd been out of contact for over a year because of my mystery health issue which was perceived to be attention seeking, drug use, laziness....god only knows.
Basically I have ADHD (and endometriosis, mild asthma for the record) and I was trying an experimental treatment of high dosage dexamphetamine (10 5mg tablets daily) in combination with 2 x 500mg Sodium Valproate (Epilim EC) tablets. Psych said the anticonvulsants were to protect the brain from the amphetamine. I later realise he was an idiot and there was no way this would help my main complaint which was extreme fatigue/lack of motivation. Oddly enough he no longer practices.

One weekend i all of a sudden really couldn't get up, i kept falling asleep...for 3 days. My face was totally numb. I felt in a dream and started to have difficulty breathing. I noticed, hours after drinking 4 liters of fluid that i wasnt passing any urine at all. This got to be really scary. My partner however decided i was lazy and refused to take me to hospital so i self medicated with a large dosage of slightly stronger street amphetamines as i was honestly afraid i was dying. I blamed my symptoms on epilim and never took another tablet again.

I have never felt right since this incident. It took weeks till i was able to leave the house, then weeks of "come back in 2 weeks" from my doctor till he'd even run a blood test. Eventually, 7 weeks later, some basic bloods were done.
7 weeks after stopping sodium valproate, it was still in my system at an almost therapeutic dose. Vit D levels were really low. Everything else seemed normal.

Since this episode I have been unable to drink alcohol at all without feeling really tired, dizzy and vomiting. Ive had hugely noticable tremors (which were slightly present for a few months before), I twitch like you would not believe at times especially when sleeping. If im sitting on the couch and fall asleep ive been known to kick coffee tables across the room. I wake up frequently with pins and needles in my hands to the point that it is extremely difficult for me to switch my alarm off or do anything with my hands for a good 10 minutes after i wake up. Sometimes the pins and needles feeling is through my whole body in the middle of the night (Sleep paralysis from what ive read)
Ive had urinary urgency, inability to concentrate, EXTREME fatigue (which i self medicate, not good i know but ive tried detoxing for 6 weeks, was unable to get up out of bed the whole time- quality of life was non existant), my face went numb for 9 months, i get periods (weeks at a time) where i'll battle with edema in my feet and ankles, noticable loss of interest in sex and diminished sensation, sharp pin prick pains at random, back pain, odd sensations, for example the tops of my feet always feel like im wearing wet socks or something, occasionally i will get the feeling of ice cold water running from my knees to my ankles - especially in hot showers - which bring on strong tremors in my legs every time without fail and make me feel exhausted. Ive dropped a lot of weight, gained muscle tone which is odd because i rarely leave the house. My hair was falling out at one stage. Vision seems slightly blurry. Began having what i would describe as absence seizures which i have brought under control by eliminating wheat and gluten from my diet (this fixed my hair and skin, stopped my lifelong bloating etc). I constantly have faint tingling and reduced feeling in my legs, my balance and co - ordination are noticeably a lot worse. I have issues walking down stairs in heels - not cool when you dance for a living - boss sacked me thinking i have a drinking / opiate problem - i can assure you i have neither. But my co-ordination/absence seizures whilst sitting/ tremors etc painted a different story.

There is probably more but im beginning to bore myself here.

Im 25. My mother is 58. It seems her symptoms began just after mine. She's refusing treatment as she has always believed that all drugs are bad and some form of restrictive diet (and constantly talking about it) will somehow fix anything.
Im terrified that my mystery illness is MS. I know thats a really selfish thing to say in a place like this.

Ive discussed this with another family member ----and the conversation basically ended up on the topic of euthanasia and how it was ok.
So i have this picture in my head that im never going to get better, only worse and will be unable to walk soon although the scientist in me is telling me this is dramatic crap.

Im trying to get an MRI as soon as possible. To top things off I dont have family near me or friends as I was just about to leave my abusive relationship - im in limbo as im fearful of being alone now

Im terrified and depressed and feel like my life is over

Help! :((

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Re: New & terrified (as selfish as that seems)

Postby ljelome » Mon Feb 11, 2013 8:22 pm

Hello from Indonesia,

I've been there too battlecat. I know how u must feel. Don't be afraid. There's many people here that can help u to decide what to do with ur condition. If u turn out having MS, there's many people here with their experiences using drugs or alternative treatments to overcome their symptomps.
Warm regards,

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|
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Re: New & terrified (as selfish as that seems)

Postby lyndacarol » Mon Feb 11, 2013 8:55 pm

Welcome to ThisIsMS, Battlecat.

First, you may not have MS at all, but there is a possibility; it is a differential diagnosis – made by ruling out other possibilities, as you may know. Very often, it is not easy or quick to diagnose. Before expensive tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. Your mention of hot showers may be similar. I had "normal" test results initially (lesions were seen on my FOURTH MRI). IF you do have MS, you have found many supportive friends at this site. We will try to answer any questions that you have. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS – my personal suspicion is that excess insulin is responsible for many MS (or "neurological") symptoms; you will probably not always agree with some of us either; we only ask for tolerance when we express unconventional ideas.

You are NOT "seeking attention." You have identified symptoms that are not normal! Write them down and discuss them with a GP or internist who is willing to work with you.

There are many things to be checked out with a blood test:
#1 the thyroid hormones (TSH, Free T4, Free T3, Reverse T3 and antithyroid antibodies)
#2 the stress hormone, cortisol
#3 the hormone, insulin (the "fasting blood insulin test" which must be requested specifically – it is not routinely done)
#4 a liver function profile
#5 vitamin D level and other nutrients

Most of us here understand your fear and depression. Your life is NOT over! You are faced with a challenge that you will meet – your new friends here will try to help.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: "Insulin – Could This Be the Key?"
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Re: New & terrified (as selfish as that seems)

Postby want2bike » Mon Feb 11, 2013 9:56 pm

If you are low in vitamin D it is important you get that level up. Dr. Krupka explains the importance of Vitamin D. If you are having a problem with gluten there is a very good chance you have a problem with dairy. Dr. Clark explains the relationship between gluten allergies and dairy. Dr. Bergman gives instruction on treating autoimmune disease. ... re=related
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