renate1989yreanne198
Well-known member
Hi all,I was hoping for some insight here...I have already posted my symptoms on here but shall summarise/ highlight what made me concerned:1. I live in Beijing. Being a tall western woman, I have large feet and getting decent fitting summer sandals here is a mission, so I used to wear huge floppy shower sandals 24/7 for 4 months here. I kept tripping in them all the time and was worried about my clumsiness. I haven't been tripping lately now it's boot-wearing season, but alas I was scared...2. I was then bitten by something [mosquito/spider] in June on my left knee- had a bad infection for 2 weeks or so. Afterwards my legs started to ache occasionally.3. Went traveling over the summer. Legs were quite uncomfortable on 5+ hour flights and after lots of walking in the heat on the flight home my boyfriend noticed my ankles were swollen...hopefully just traveling and poor footwear from excessive walking caused this.4. ALS ice bucket challenge becomes big news...I did the ice bucket challenge with the students I teach. I then recalled being in bed one night and realised my left foot was twitching/jerking as was my right shoulder blade. I then freaked and sat up numerous nights worried about this and naturally all-over twitching began with anxiety.5. The anxiety had eased somewhat due to numerous visits to the doc/ valium/ counseling.6. HOWEVER, the twitching in my calf is constant. When I am moving around during the day and the muscles are in use, I don't feel it. But when I sit down I feel the typical pulsating twitches, but also a feeling of vibrations/ buzzing in the calf and on/off in the left foot.7. The doc recommended exercise to tire the muscles, which I did, but that seemed to cause more aches and pains than usual DOMS in the affected twitching muscles. Also, I have had about 4 cramps in this affected leg since July. The first was when I was still wearing the bad sandals and walking everywhere, so put it down to that. The second was after flying from Beijing to London and asleep in bed at night so put it down to jet lag and travel, and then recently, it was after exercising, so put it down to that. But am obviously stupidly scared it could be ALS cramping. Also, the left knee, which is the thinnest area of my leg, feels real strain now- i don't know if strain counts as weakness. I certainly feel I wouldn't be able to do a high jump with it the way I used to...but to me it feels like a strain injury and not just pure weakness from nowhere.8. Since I am HYPERAWARE of the left leg, I have noticed that from ankle to groin, this leg has less muscle tone than my right. Now I am right handed- suggestive that I am right dominant, but I used to be a sprinter in high school and play field hockey [I am also a 25 year old, white, female btw] and I always led with my left foot and would kick a ball with my left foot. However, when standing teaching all day, I put all my resting weight on my left leg, so I don't know if this is a connected factor to passively switching off the muscles in my left leg? 9. If someone could tell me how to upload photos I would show you all my calves and left knee....the measurements between the legs are very close, but the anatomy is very different. My left leg is much softer than my right, and the muscles to the right and left of the my knee cap on my left are NOTICEABLY thinner- infact, when standing with my legs together, it looks as if the muscle on the inside of my left knee cap is curving inwards towards my shins, whereas my right leg goes straight down. Furthermore, my right calf looks bulkier/ fuller than my left and when comparing my inner thighs, it's the same situation there/ When I also hold my calves in the air to feel either side of the fibula bone, i can feel either side of it on my left calf but only one side on my right, again adding to my conclusion I have less muscle tone on my left calf than my right.10. My doctor and neuro even agreed that the knees look different. Also when I stand, and try to tense my thigh muscles, the skin/fat/muscles over my left knee looks podgier than my right.I don't know if this is normal asymmetry [I doubt the curve can be natural], due to me resting all my weight on my left side when standing and constantly crossing my left leg over my right, OR if this is muscle wasting/ atrophy linked to the constant twitching in my left calf. Another weird thing is the skin on my left leg is lighter in colour than my right. [I did get badly burned this summer and still have the tan but dont think my legs could have caught the sun so differently]I have normal reflexes, normal babinski and normal strength in my clinical exams. My bloods came back with no deficiencies and no hypothyroidism. No Lyme disease detected [we checked after that bite I had]. This makes me more nervous as the easy things are being ruled out.It's just with BFS you often read of other sufferers who have other conditions, or had a virus just before it all started. I didn't really have anything. I know I read about ALS, and the mind is a powerful tool...but to have constant twitching caused by the mind alone would surprise me. Don't get me wrong, China wants to kill me in its own way...I have had, since this time last year, a chest infection, an ear infection, sinusitis, some bizarre stomach pain that lasted for a month and then that bug bite. The a long running UTI/ recurrent UTI's. But my last "ailment" ended in July. I then started with the leg pain in July, a few cramps in July/ August/ now and the twitching started in September. With the course of all these ailments, I have been on the most antibiotics EVER in my life- Amoxicillin seems to be a constant go-to in China, Cefalexin, Nutrafurantoin, Trimeprothrim, and even this past week I had Ciprofloxacine for a bizarre bacteria that usually causes pneumonia which actually turned up in my smear test [sorry to the men reading this] but I did read this bacteria, for pneumonia patients certainly, normally impairs those with a deteriorated immune system. It was called klebsiella pneumoniae. I don't know if this constant consumption of antibios could be linked...I have an EMG on Wednesday 8th October, but I'm also worried that may be too soon to detect any ALS?? I don't want to have to worry about going back for a second one, or wait for weakness to emerge!!Also, today I read soooo much about fasciculations and cramps being an initial sign, then atrophy and weakness that I want to tear my hair out. I know Peter Frates and various other younger ALS sufferers complained of twitching first, but I have noticed a connection...as did the Mayo Clinic...these twitching symptoms tend to be more often in the chest/arms/back rather than the lower limbs...so I'm praying that might be my saving grace here.I really wish you all some relief from this condition and if you are searching for answers like me that they come soon. The frustration is a constant anxiety and puts so much strain on work and relationships. If someone could also kindly help me upload the pics of my legs [my legs are not my best feature btw, and certainly not at present] I would be grateful for some second opinions.Best wishes to you all!
