Worried & need advice/support

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Worried & need advice/support

Postby readytocheckout on October 21st, 2013, 6:33 am

Hi Folks

First time poster but I've been reading posts here for quite some time. Most of the time I feel I get my answers from the many posts I've read which basically say - 'yeah that's BFS', but I'm going down a path to ruin at the moment and need some help. I'm a 53yo male.

I started twitching with painful cramping in my left calf in Dec 2012, this progressed to neuropathy type burning pain over both ankles and the front of both lower legs over the next month or two. My GP suggested I be checked out for MS which came back negative (spinal MRI no contrast & followup head MRI with contrast), my neurologist exam result was negative for MS.

In May 2013 I noticed what seemed to be weight loss around both knees and significantly on the outside of both legs just above the knee, when I'm sitting I can put all four fingers in the large dent that's on the sides of both my legs. My legs around and just above the knees on the outside have become very bony. I have also lost bulk in both my hands, especially in the finger\thumb pads and around both thumbs close to the thumb/hand joint, also looks like the thenar muscles have gotten smaller especially on my right hand. I have pain in the left thumb when trying to do daily tasks with my thumbs, have also had some wrist pain so I'm thinking there might be some carpal issue going on.

So in Aug 2013 I went for an EMG and NC testing, the EMG specialist said he didn't see anything MND related but did mention peripheral nerve hyperexcitability, he also asked me if I had carpal tunnel in my right hand as the NC test was suggesting this.

I went back to my GP in Sep 2013 and was told that the neurologist didn't believe there was any carpal tunnel or MND and asked me to come back in six months. My GP also told me I need to calm down and get my stress & anxiety under control, I couldn't agree more!

So what's scaring me right now is what's happening to my hands which looks like muscle loss as they're becoming quite bony and the weakness in the left thumb, the wrist pain has mostly gone. I'm also quite worried about the weight loss or whatever it is on my legs, my GP doesn't believe that it's muscle loss but did write on my neurologist referral "muscle wasting", can you imagine how that freaked me out. The twitching is driving me crazy, especially the sensation inside the palm of mainly my left had which I guess is twitching which sometimes I see and sometimes I don't. I also have twitching pretty much all over, the all over twitching has been going on since early May. I was sooooooo happy with the EMG result but that now seems a distant memory and I keep thinking I need another EMG. I tried yoga but had to stop due to cramping in my feet. My knees hurt when I climb stairs. But I keep trying to remind myself that the EMG didn't suggest MND.

I guess due to the stress I lost almost 10kg and I was hoping that this was the cause of the loss of leg mass on the side of both legs. But I put most of the weight back on but my legs didn't change. Yesterday I did 35 squats and a 6 kilometer walk without difficulty so I guess that's a good sign that legs and things are still working ok.

So what do you think? My 53yo hands look like they're 80 due to possible loss of muscle or loss of bulk, large 'dents' on the sides of both legs just above the knees (which the neuro, EMG guy & GP have all seen), the twitching is stressing me like there's no tomorrow, and no-one can explain why I look the way I do or why I'm twitching. The all over twitching and especially the sensation I feel inside the palm of my left hand like a twitch which I can't see is driving me crazy, pretty much sums up my username sometimes :(

My twitching is everyday all the time.

Cheers & thanks for reading my "another BFS post", I pray that this is BFS !!
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Re: Worried & need advice/support

Postby Yuliasir on October 21st, 2013, 9:31 am

Hi,
I can say only that if EMG/NC and exams did not suggest any neurodegenrative process, and becasue you seem to be quite fit and able to work with the hands, then it is not MND. MND means weakness and 10 months is well enough for weakness to get in.

as for legs and hands... it is a good thing to understand that atrophy, especially essential one, does not allowwo people usually to enjoy their hands or legs. remember people in the cast - they have clinical weakness and subtle atrophy due to not using the limbs - and they have to learn back how to use cups or walk. If you run and do squats, it is whatever else but not atrophy, not for degeneration at least.
At 53 you may already start to have some hormonal changes, yes, gents also have that - leading to loss of subcutaneous fat. becasue our hands do not have too much muscles, they are first to get bony when we are losing fat tissue. legs and arms are next. have you checked your hormonal status? it anyway might be useful.

BFS often demonstarace carpal-like damages, knee pain, foot cramps. All this is within our classic picture.

have you ever checled you bllod circulation in the legs? this might also result in muscle wasting without significant weakness, and cramps might be caused by circulatory issues too.

hope this would help a bit
Yulia
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Re: Worried & need advice/support

Postby readytocheckout on October 22nd, 2013, 6:59 am

Hi Yulia

Just want to thank you for replying to my first post. I've read so many of your posts and can see that you've tried to help so many people here.

I did have the circulation in my legs checked about 6 months ago with a doppler ultrasound and that was fine. Every test I've had, including blood tests, have been fine for this disease I'm most terrified of right now. The twitching is driving me crazy with worry, especially the twitching in the places where I seem to have lost weight or bulk.

But I'm sure you're right, since it has been 10 months since I first noticed my leg twitching and I'm still walking around then I guess that has to be a good sign that this isn't any sort of MND even though the twitching has got really bad and has spread.

I'm careful with my diet and I'm using magnesium for the cramping but it doesn't seem to help, maybe things would be worse without a careful diet I just don't know. I just wish the twitching would leave me alone for long enough to stop worrying to see if the worry and stress might be making things worse. My stress was much worse about 4 months ago, I couldn't sleep more than 2-3 hours every day and I became exhausted and that's when I lost the weight. Perhaps losing the weight caused my muscles to shrink a bit before I lost body fat and now the only way to regain the muscle is to workout a bit, exercise was never a favorite activity of mine.

My family says just ignore the twitching but I can't, its there and scares me everyday, its the feeling of the fine twitching in my hands that is the worst. I can't believe that I might have to accept this twitching as being a part of me now. I've had anxiety problems most of my life but this twitching has to be the worst and is really feeding the anxiety so as you can see I'm stuck in a place I don't want to be right now. I'm waiting for the day where I get out of bed and find a leg won't work or I can't turn the key anymore, I'm just waiting for this to happen and it's making life miserable.
Garry
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Re: Worried & need advice/support

Postby shell67 on October 22nd, 2013, 7:18 am

I've been twitching on and off since June and also lost quite a bit of weight, which I attribute to anxiety. My tendons seem quite prominent in my hands these days, and if I look closely, I see dents near the wrists where I know there weren't any a few months ago. I also have constant internal buzzing (actually, my left leg is buzzing right now as I type this), numbness, stiff muscles -- you name it! But since I had all the testing (MRI, EMG) and have been to/spoken to my neuro numerous times, I refuse to believe any of this is related to the dreaded disease (or any disease for that matter). Try not to wait for the day when you can't pick up your leg to walk. Instead, be grateful you don't have "the disease that shall not be named" and remind yourself that stuff with BFS tends to come and go. I'm sure your anxiety about the twitches is contributing to your other symptoms. Let go of the anxiety and you'll likely feel tons better. God bless!
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Re: Worried & need advice/support

Postby Yuliasir on October 22nd, 2013, 7:24 am

Hi Gary,
as an old time anxiety victim I perfectly understand you... I still sometimes get in doubts - what if this pain in my had is sinister? what about cramps in the foot?

and then I remember that I am sitting worker and typing 10-12 hours per day... and no weekends...etc. and things become more clear for me :)) When life space is between bed and working desk with some ocasional walks with the doggie...it is wonderful that I have only mild BFS and nothing more...

So becasue you say that anxiety was your companion for years, maybe it is time to give it a bit of attention because it never goes away by itself, unfortunately...


(as for magnezium, it sometimes helps and sometimes not as far as I can see. We BFS people also might have certain damages in complement system preventing our bodies from efficient Mg digestion. However my Mg was always perfect... I have subclinically low Ca for years (slightly lower that lowest lab limit in the same lab), and nobody really knows why (parathyroid seems to be Ok), so... I just find some rest in the fact that my mom has the same cramps and she is full of energy 23 years older than me ;)))
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Re: Worried & need advice/support

Postby readytocheckout on October 24th, 2013, 4:37 am

Hi Again

I'm getting worried about the symptoms in my thumb. I've read about perceived weakness, but this is pain in my thumb when I try to grip something tightly which is quite thin, a key for example. To me this amounts to weakness, yes? As I move the thumb around I feel like a pain in the bone or around the thumb, hard to describe, and I definitely don't have the same strength in that thumb compared to my other hand. If I push the thumb against the index finger the thumb hurts and not much strength it seems before the pain starts. I do have some pains elsewhere in my hand but it's often in places where carpal isn't supposed to affect, I have carpal symptoms and more in one hand but I don't know what to make of this.

This is really freaking me out. Also when people talk about clean EMGs, would an EMG which showed peripheral nerve hyperexcitability be considered a clean EMG? I'm confused about people who are twitching but say their EMG is "clean".

Thanks
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Re: Worried & need advice/support

Postby volfan on October 24th, 2013, 7:55 am

just wanted to say I have the same feeling in my right thumb. It is what it is and that is nothing. Nothing like what you are worried about anyway. I have so much more pain all over since my BFS started - sometimes I just can't believe that the body can turn on one like this. BUT - it can.... and yet, it is "benign". And thank goodness for that!
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Re: Worried & need advice/support

Postby readytocheckout on November 4th, 2013, 6:11 am

readytocheckout wrote:Hi Again

Also when people talk about clean EMGs, would an EMG which showed peripheral nerve hyperexcitability be considered a clean EMG? I'm confused about people who are twitching but say their EMG is "clean".


Hi Twitchers

Would really appreciate some info on my above question about EMGs. Another thought I've had is about medication I've been taking for about 12 years. I was taking omeprazole for reflux, and last year I was using a similar medication which is esomeprazole until November when I switched back to omeprazole because it's half the price, as far as I know they're pretty much the same medicine.

What's interesting is that I've read that omeprazole can cause twitching, my twitching started in Dec 2012 and it was Nov 2012 when I switched from esomeprazole to omeprazole. I'm back on esomeprazole for the past 5 months but no change to the twitching. I'd love to get off this medication because of the risk of low calcium but when I try my reflux sets my throat on fire.

Also another issue I've noticed which I think I mentioned in a previous post is the loss of fat, this seems to be occurring all over my body and is especially noticeable on the back of my hands which have become quite wrinkled and dry with very prominent veins. Sure I'm middle aged but the loss of fat and what appears like aging skin has happened so fast and only after I started this twitching in Dec 2012. I've had scans looking for other nasties (cancer) but nothing was found so nothing to explain the weight and fat loss. This )(*^&^*%$ twitching has me so *beep* scared and is consuming me right now because of the changes I can see happening to my body around weight and fat loss, not to mention the horrible twitching sensations, right now my tongue has this strange burning buzzing sensation and my hands look like a roadmap of veins, and the hand/palm twitching is a major stress right now.

Thanks to you all for your replies so far. This website is so far keeping me from going totally insane.
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Re: Worried & need advice/support

Postby Anxious guy on November 5th, 2013, 5:23 am

Strange.... I take Omeprazole too but only when I feel like my acid reflux is flaring up... I started it last year but I don`t take it very often... My throat would contract and food would get stuck and I couldn't even swallow water for a few minutes or so until it relaxed again but since taking Omeprazole it really hasn't bothered me... i haven't had a choking episode in about 12 months...
I was so worried about the choking after like 8 years of it as sometimes it got worse I had an endoscopy and they said I am fine but I should take the tablets to reduce my reflux as that`s what is causing the throat to contract..
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Re: Worried & need advice/support

Postby readytocheckout on November 7th, 2013, 4:34 am

Anxious guy wrote:Strange.... I take Omeprazole too but only when I feel like my acid reflux is flaring up


Thanks Anxious guy. I guess I'm just looking for reasons why I've developed this twitching which I'll probably never find. Perhaps it's the years of anxiety. For the last two days my left bicep has been twitching like crazy and I also feel like there's an ants nest in there, and today when I stopped to think about it I imagined waking up tomorrow with half my bicep atrophied which caused an instant anxiety reaction!

Hmmm :- anxiety + twitching (BFS?) = panic mode. What a life.

I'm also still curious to know whether PNH seen in an EMG would be considered a clean EMG, I realise that it should mean clean from *** but would it still be considered "clean'' ? So if anyone can enlighten me that would be appreciated.

Thanks heaps.
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Re: Worried & need advice/support

Postby Anxious guy on November 7th, 2013, 6:58 am

I would say that I don`t think the omeprazole is the cause as I don`t take it that often as I haven't been bothered much by reflux lately...
Also my first hot spot 4 years ago on my chin happened and I had never taken omeprazole at that point. That chin one lasted a few months and I had the random ones all over but hey it went away and this appears to be another flare up..
I think its flared up due to the arrival of my 2nd daughter, I love having her of course but I think with my routine changing slightly and with already dealing with a general health anxiety and busy at work, driving 2/2.5 hours a day every day I think its just built up anxiety and triggered this..
A lot of people seem to get this with small children or new born`s and a lot of BFS people seem to have general anxiety / health anxiety.. there must be a correlation there !!Lifestyle change, new kids, busy at work, stress (even if it is slight), general concerns etc I think its might all add up and some of us must be susceptible to BFS / twitching...
I am no doctor but I have read so many stories with similar correlations...
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Re: Worried & need advice/support

Postby readytocheckout on November 30th, 2013, 5:39 am

Hi Everyone

Just thought I'd post an update for anyone who's interested. I had to go for a checkup at my neuro last week, my head MRI earlier this year found a cyst and I had another MRI last week for a followup. The result was the cyst hasn't changed in 6 months so the neuro was happy with that, and no MS or anything else that showed up either. She's a very understanding lady my neuro and I was able to have a great chat with her, my wife came with me as well. So an understanding neuro and an understanding wife, what more could I need ! Well I can think of one thing, no twitching but it seems that's not going to happen anytime soon.

I've been very worried about some crazy weight loss on my legs above the knees, well it looks crazy to me anyway. She had a good look at my leg muscles and did another exam with the usual strength tests etc and everything was fine. Seems that the weight loss isn't muscle but a loss of fat. I've had a CT scan to rule out cancer so the loss of fat might just be age or stress or something lacking in my diet or all of the above, who knows. I've also lost fat from my arms and hands. The fat loss from my hands has caused the veins to become very prominent. Seems like the fat is taking up residence in my belly instead, maybe that's a result from my off the charts stress I had for about 3 months earlier this year.

And just like numerous other posts I've read here, I didn't twitch while the neuro was watching.

So after the reassurance I came home feeling pretty good and then it starts again, that stupid twitching. I've now got this sensation over my nose which feels like someone is draping a sheet over my nose, kind of like water running over my nose or an insect crawling. Yesterday I had burning legs just above the ankles and for the past few days the soles of my feet are quite sore with a tight feeling in the arch making it uncomfortable to walk. Once I'm up and walking the sole pain goes away soon after.

I still cannot get this A** thing out of my head and I keep waiting for another symptom to start up. But then I remember the reassuring words from my neuro and the EMG which at the time showed no A**, just PNH according the the EMG specialist.

I like to read other people's posts here of their neuro visits and test results so I just thought that this post might help someone who's like me and often needs reassurance that nothing bad is going on with this twitching and other sensations.

Also, I've been wondering whether there's any other tests or checks or whatever that could be done (or should be done) to make sure that there's not something else going on with me that might need treatment, perhaps that something might be playing a part in my twitching. Maybe something like thyroid, I've read that a normal TSH doesn't necessarily mean that the thyroid is fine and that T3 & T4 should also be checked. So there you have it, I hope I didn't bore you but that's my story so far. I'm sure I'll be back here in panic mode soon (I hope not though).

Cheers
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Re: Worried & need advice/support

Postby Yuliasir on November 30th, 2013, 6:54 am

Hi Garry,

I noted that you mentioned that you have specific fat distribution over the course of your condition - thin legs and hands and more fat on the belly. Adrenal hormones in excess may cause such redestribution of fat so probably I would suggest to visit endocrinologist and check this too (there are about 4 or 5 tests I think, some need daily urine collection, others are done on the blood serum). Male hormones depletion may cause this type of fat deposition too. becasue you find that change had happened rather rapidly, it might be worth to check twice again, becasue sometimes hormonal chanes are elusive and can not be spotted at once.

At leas 35 squats a day and 6 km run means ou are REALLY FIT so it is definitely not like people with developng MND feel themselves.
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Re: Worried & need advice/support

Postby readytocheckout on November 30th, 2013, 7:58 am

Hi Yulia

Well I don't run, it's a walk. I'm sure not fit enough to run. I've had to reduce the squats as the knees aren't what they used to be. But anyway around 10-15 squats per day and a 6km walk 3-4 times a week keeps the blood pumping. About the endocrine, I remember having a urine test which had to be done first thing in the morning which I think was for something like that, the result was fine. The fat loss does have me a little concerned though, but what you said about hormones could be relevant, I've noticed that the man boobs, well not sure what to say about that lol.

Cheers
Garry
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Re: Worried & need advice/support

Postby readytocheckout on December 6th, 2013, 8:02 am

HI Again

Well the good feeling I had after last week's neuro visit didn't last. Today has been an awful day. Strange sensations on my face, especially my lips and chin, and a feeling in my tongue that I don't know how to describe which is a little like an electric sensation all down the left side of my tongue.

Today I tried to climb a ladder at work and I couldn't !!! My right knee just wouldn't let me climb, I don't want to have any knee problems but I sure hope that this is some sort of joint issue and not the nasty!.!.!. I'm so scared today. I've gone into hyper vigilance mode checking and checking again. I can't live my life like this but I don't know what to do, the twitching and loss of fat (I guess it's fat) body wide is scaring me too. The sole of my right foot is sore to walk on and my legs feel so heavy after sitting for a while. Also while I'm walking my knee, the same one I couldn't climb with today, is painful when I lift my leg to bring it forward for my next step.

Sorry guys, I'm at the end of my rope here and I'm really not coping at all. These tongue and face sensations/twitches or whatever they are have worn me out emotionally today. I'm just an old sad wreck of a person, this would have to be the worst year of my life thanks to whatever this is that I have - BFS or whatever I just don't know.
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Re: Worried & need advice/support

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