Going crazy

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Going crazy

Postby reanne2489 on October 3rd, 2014, 9:54 pm

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!
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Re: Going crazy

Postby J4son on October 4th, 2014, 12:14 am

reanne2489 wrote:
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.


You’ll be surprised, but maybe the majority of people here got widespread twitching immediately after reading about widespread twitching on Google. Maybe after all this entire syndrome should be called Google-fasciculation-syndrome (GFS) instead of BFS.

reanne2489 wrote:I have an EMG on Wednesday 8th October, but I'm also worried that may be too soon to detect any ALS??


With health anxiety no matter how many tests we do, we will still question the results. A test becomes a kind of safety behavior and a reassurance ritual instead of being a mere medical procedure to pinpoint a specific problem. Some people are convinced that they have a stomach cancer and will undertake many endoscopies one after the other for years without ever being convinced that they do not have a stomach cancer. Here we collect EMGs, like others collect old stamps or rare butterflies. So you’ll see people with 5, 6 or 7 EMG and many years under their belt still anxious to death about MND. At that point it ceased to be a neurological problem and becomes a psychiatric problem.

reanne2489 wrote:I don't want to have to worry about going back for a second one, or wait for weakness to emerge!!


But you will, like all of us here who keep complaining for years about all the ALS symptoms except the main symptom, the hallmark of ALS which is weakness. It’s like someone being convinced for years to have Alzheimer disease without ever developing any cognitive impairment. Anxiety has to be faced head on. Time alone might ease things but is not a cure to health anxiety.

reanne2489 wrote: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.


That’s an example of taking some random info out of their context. Fasciculation and cramps being an initial sign of ALS is so rare that when it happens doctors write papers about it in the medical literature. No one will ever write something about the cold virus linked to a runny nose because everyone affected with a cold virus will get a runny nose. However if someday the cold virus is let’s say, linked to a sinus tumor in rare outlier patients, many medical literature will mention it. Same for MND. Twitching as an initial and only symptom of MND remains a very rare presentation of the disease.

reanne2489 wrote: 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.


Another story taken out of its context.

1) First do not make the confusion between twitching as an initial symptom of ALS and patient noticing twitching first. Frates did not go to the doctor for his twitching, and did not have an EMG when he had his twitching and did not get a benign diagnosis for his twitching. On this board most people have seen many neurologists, had more EMGs than any sane person could think about, and got many benign diagnosis. So a completely different story.
2) His twitching were very focal, not widespread and not after reading about twitching on Google.
3) Moreover, in a very short time (a few weeks) after the onset of his twitching Frates started experiencing true weakness during his play. Another couple of months and he couldn’t button his shirt anymore and had 10 of the 12 ALS symptoms listed on an ALS website. So, He did not twitch for a year with a benign diagnosis from his doc and then developed ALS.

reanne2489 wrote: I really wish you all some relief from this condition and if you are searching for answers like me that they come soon.


Answers are here on this website, in your doctor’s diagnosis and in the many studies publish on the subject. But no anxious mind will ever be convinced about it.
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Re: Going crazy

Postby Yuliasir on October 4th, 2014, 12:30 am

Reanne,
constant antibiotics of course do nothing good to immune system, GIT and even nervous system and I suppose they were at least not blindly prescribed just in case and that your sinusites etc were really bad and required such intervention. Regarding bacterias: however klebsiella is called pneumonidae, it was found where it ususally lives, and in fact it does not mean you have something too bad with your immune system. Practically for a person with recurrent UTI it is really expected to have something like that to be found. I think, it is expected to have a bit of recurrent UTis for ladies due to their more affected lower UT in such climat as in Beijing (hot and wet in summer and very cold and dry in winter, as far as I know).

As for the rest, nothing really in your symptomes does point to ALS. You have a stressful life apart from your and family, in the one of the most badly polluted sities of the world, in an absolutely different culture (yep I know Beijing is westernized now but still air pollution, different time zone and differrernt language, lifestyle etc. are stress factors). Stressed people are prone to infections, twitching and anxiety.

Having 4 leg cramps in a month is really not a reason to get worried about early ALS onset as you are a teacher and surely have some circulatory issues due to standing for a whole day, being a tall person it is even easier (and the fact that 5 hours of sitting resulted in a slight edema just confirms that). Complains for short lasting slight cramps resolving on their own or with minimnal assistance (like changing position or applying a counter-tension) most probably is an indication of circulatory issues, not MND. Calf twitches are really commonest, and it was found in absolutely healthy people.

Probabaly you shall think about how the whole your life goes. BFS as a manifestation of ultimate stress often presses on us to do that. If assignment to Beijing is far too hard for you and causing you so much discomfort and little pleasure if any, then it is worth to think about getting some other chances. At 25 the whole life is ahead...
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Re: Going crazy

Postby reanne2489 on October 4th, 2014, 5:45 am

Thank you both.

I am just so worried because the twitching which initially sparked the body-wide twitching was in my left foot and calf. The body wide twitching has largely calmed down. But the left calf is absolutely constant- it just feels like a shivering/ buzzing/ vibration when im sitting.

I am also concerned because my knee is so strained. I did not have this symptom when the twitching started- maybe a few weeks in [it has only been a month of noticeable twitching now]. Recently I have been doing some running and weights and strength tests on my legs, and I know I feel this strain on my knee afterwards.

I do not know if this qualifies as weakness though? For example, if I hop on my tip toes it hurts my left knee [the one with this weird inward curve]- so I'm unsure if it's cause it's weak...like how Peter Frates started complaining about his rate of play, that my leg is now atrophying and weakening...after all it wasn't that he didn't have the ability to hold the bat, just not hit as accurately etc.

I am hoping, that since looking at those god awful sandals I wore all summer and tripped in many times, that the left sandal sole is sooo much more worn than the right. And when I sit down in a chair with good posture, and knees bent close together, my right knee cap sits out further than my left. I also, when standing lean all my weight on this left leg. Moreover, my left thigh is 2 cm smaller than my right, with other slight measurements differences going down the left leg to the ankle. Sooo, I am wondering if I have acquired a leg length difference which might explain the strain my left knee is feeling after restarting exercise, and also the reason for decreased muscle tone in my left leg...as I mean my entire left leg from ankle right up to my hips looks slightly slimmer than my right. And, although ALS is fast, I don't think atrophy happens so evenly throughout such an expanse of a limb...???

I think, over all, I am so freaked because the twitching is focused in my calf, it is different from any twitching elsewhere in my body, and the size and shape difference to my muscles there makes me worry about atrophy before weakness...for even on the ALS forum there are patients who said they had atrophy well before weakness... :!: :(
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Re: Going crazy

Postby reanne2489 on October 4th, 2014, 5:54 am

Also, I forgot to add, to try and give a clear and balanced picture...like I said before, I recall from my high school days this left knee would sometimes cause me problems when sprinting. And I remember being out dancing last December [so what, 9 months ago] and finding this knee sore/ achy- again cause I know I put all my weight on it when standing, and I was dancing for like 5 hours...so perhaps all this weight bearing and old injury, couple with crappy footwear this summer has injured it. Then being told to return to exercise by the doc to ease twitching, and doing strength tests to check for ALS, has hurt me.

I'm just also a little concerned about my weight loss...it's not been crazy, and im not hugely thinner than I was, but I haven't been trying to lose weight, and if anything, I started taking the pill again this January so expected to put weight on! But over all, I've lost about 7lbs since Xmas [without trying] - about 4 of which were lost this past month...although it could be my stress diet causing it as I wasn't concentrating on eating completely throughout the day. I've also cut out all alcohol and caffeine since summer. So maybe that contributed...?
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Re: Going crazy

Postby RIno468 on October 4th, 2014, 11:33 am

I have read your posts on both this site, and the forbidden site.

I understand you are worried about the *** as are well now, or have been at some point.

There is a difference between worrying you have it, and looking for it. You are as of right now, looking for it.

The *** people told you it wasn't ***, your symptoms at face value CAN point to ***, but taken within context, do not sound like it.

You are clearly headed for a 2nd EMG so get one and be done.

As for your knee --

I don't think I've read that *** starts at mid knee -- so if you had wasting in your legs -- your foot would clearly be affected first.

So unless youre tripping all over yourself, you should be fine.
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Re: Going crazy

Postby reanne2489 on October 4th, 2014, 1:13 pm

Thanks Rino...

I know I am looking, and I am seeing a counsellor about this...I think it's cause im in the early stages of twitching that I'm anxious to see if weakness will follow [ie clinical weakness as my leg is strained and feels shakier].

I also think for me the anxiety lies in the fact that the body twitches i get all over are subsiding/ more quick pulsation and then stop, whereas the left calf is constant and the muscle tone is less than the right.

I don't know if other BFS'ers can relate to those symptoms??
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Re: Going crazy

Postby Nytviolet on October 8th, 2014, 12:07 am

Yep I can. I've had mild fascics since developing Fibro back in 1996-97. About 6 months ago I also started feeling weaker on my left side. Mt left calf is 3/4" smaller than the right, and my whole left side in general is more twitchy, more achey and seems to tire more quickly. It's been 6 months, I still walk normally, stand on toes/heels and type 85 wpm. My neuro wouldn't even do an EMG bc I didn't have hyper-reflexes or Babinski. There is radiculopathy and disc encroachment, so obviously it's causing this. If I'd had *** six months I'd be tripping or dropping stuff by now. I guess I'm just tired of living in fear. With each passing month you'll get stronger psychologically. Hugs
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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