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I always thought the problem was the varicose veins in my legs. I was 36 at the time.
I'll get them stripped sooner or later, I thought.
Legs got heavier and heavier, I started to fall over (mostly when drunk).
I finally had my veins stripped, 25 cuts in one leg alone, a hospital record.
And, my legs did get better (a bit), but no.
I went back to the hospital, the cardio vascular specialist, he sent me to neurology.
Tests, tests, tests. 8 MRI tests, spinal tap, everything.
Hereditary Spastic Paraparesia. A big shock.
Medicine? Clonazepam and Baclofen.
To be fair, the Baclofen did ease the spasticity somewhat, less foot-drop.
But, at the cost of me being spaced the entire time. I was having to take 10mg every 2-3 hours. I enjoyed it, but long term I knew it wasn't the best course.
The Clonazepam. That is one heavy-duty tranquiliser. Again, a very nice way to drift through life, but no way could I take that every day.
I talked to four different neurologists, and It was like getting blood from a stone. Muscle relaxants and tranquilisers. Take it or leave it.
Electrical Muscle Stimulation.
I bought this - amazon.co.uk/NeuroTrac-ECS3...
The way I figured it was my muscles are atrophying, wasting away. Maybe if I can stimulate them from the outside, maybe I can do some good, maybe I can relax some knotted up, spastic muscles.
And, do you know? It actually worked. I used it so much I got electrical burns on my legs. Had to stop using it. I'll restart again soon.
It was when Googling "experimental spasticity medications" I found 4-aminopyridine. For some, a magical anti-spasticity drug.
My neurologists refused to prescribe it.
As well as spasticity, my other enemy is fatigue. Not too much information out there about HSP fatigue, so I spent a lot of time on MS websites.
It seemed to be a choice of Methylphenidate, Amantadine, or Modafinil.
I couldn't find any doctor who would prescribe me Methylphenidate, but I was prescribed Amantadine and Modafinil.
The Amantadine didn't work, and I wasn't too happy about taking a drug intended for Parkinson's disease.
I was also prescribed a tricyclic antidepressant that supposedly had stimulant potential. But this made me feel awful. Incredibly powerful drug.
I tried Gabapentin for spasticity, blimey. I was so spaced out. Not unpleasant, but I couldn't imagine that everyday.
I tried Tizanidine but that made me feel sick, sick right to my very core.
Modafinil worked extremely well for my fatigue, and it actually helped my spasticity as well. Very good.
I think it helps spasticity simply because walking is such hard work, every step has to be thought through. Leg up, balance, steady now, leg down, not too hard, balance, next leg up, not too high, steady, balance, etc.
Takes a lot of mental and physical energy. But on Modafinil, even the most tedious tasks are a piece of cake. I could actually walk again, finally.
But, the Modafinil costs a fortune. I can't afford it.
I started ordering it from India. Very stressful every time. Will I get ripped off? Will I get arrested? Am I ordering rat poison?
Finally, I found mod4alll.com
Modafinil and 4-aminopyridine, and they are in the UK.
The 4-aminopyridine really does work. 5mg, 5 times per day. Eases spasticity, foot drop, and fatigue.
I am resigned to the fact I will be on drugs every day for the rest of my life. The Modafinil/4-aminopyridine combo is so far the best yet.
I still feel tired/fatigued, but nothing like before. No more aching, tight calf muscles, no more falling asleep in the afternoon/going to bed at 8pm.
Finally, light at the end of the tunnel.
Then last week I had the results of my genetic test. Mutation of my ABCD1 gene. I have AMN.
Going for a blood test for VLCFA and a brain MRI tomorrow.
I had 6 MRI's two years ago, all fine. Getting worried now though.
I'm 44 now, with 4-aminopyridine and Piracetam I can still walk unaided but if I stop the drugs it's terrifying the state I am in. Staggering about, hanging onto walls, et al.
Anyway, that's enough for now.