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mom2aidan2002
14 Posts |
 Posted - 05/11/2009 : 17:11:49
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I posted last week about a new symptom I developed--left foot involuntary movements/twitching in my toes. I saw a neurologist and my neuro exam was completely normal, except for hyper-reflexes bilaterially(but that doesn't alarm me because 12 years ago when I was doing the million dollar work up for sciatica/MS, that was my only positive finding then too--and I have been "free" of sciatica/back pain using Sarno techniques).
My labs showed low ferritin and Vit D, and my neurologist said that low iron can cause fasciculations and/or restless leg syndrome. He felt this was a variant of RLS. (My toes twitch when I am at rest, but I don't really feel an urge to move).
Anyway, I felt a little re-assured and actually noticed the twitching improving after being on iron supplements 3 x per day for the last 3-4 days--to the point I fell asleep easily the last 2 nights.
As I was driving into work today tho, I started thinking how great it was that the iron took care of my symptoms and how great it was to feel normal again. And now my foot/toes are twitching up a storm. Plus--I stupidly started researching, since I also have noticed my foot jerking sometimes--and am back on the ALS bandwagon. I really want to be reassured that this "proves" that these symptoms are TMS equivilants, but I am harboring some lingering doubt due to fear of the unknown. All the signs point to TMS--them starting initially with relief of anxiety about swine flu and right after I stopped a flare up of sciatica, getting worse again when I stop worrying about it, obsessive research, fear of the worst (ALS, MS, etc.). I even noticed that when I saw that ALS has weakness associated with it, I started feeling like my left leg was weak (but the neurologist's muscle testing was totally normal).
I know no one here can confirm that it is TMS, but any suggestions about how to work with it as if it is, even in the face of lack of 100% medical confirmation? (My mind goes to the fact that a new symptom like this can take weeks+ to "progress" to a true neurologic condition).
Thanks!
mom2aidan2002 |
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scd1833
USA
124 Posts |
Posted - 05/11/2009 : 18:13:16
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RLS is TMS, just accept it and relax. your "doomsday" approach and physical treatment is making it worse. besides if it is something serious, you're screwed anyway so why worry about it?
your obsessing over your body... THAT IS TMS.. |
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mk6283
USA
272 Posts |
Posted - 05/11/2009 : 20:35:05
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Oh boy. Take a deep breath. Relax. You don't have ALS. You don't have MS. You have TMS.
This one hits close to home so I'll do my absolute best to reassure you that there is absolutely nothing wrong with you, even though your neurologist has already done that!
Every year there's a medical student who thinks they have ALS and I can now proudly admit that I was once one of them. I wasn't even completely reassured until I forced my neurologist to give me an EMG. I've come a very long way since then (M.D. in 2 weeks!) and I now know that these twitches are almost always just TMS/stress-related and nothing more.
If your exam was normal, then you have TMS. With all due respect to your neurologist, this is not RLS and it is also highly unlikely that it has anything to do with your iron levels, in my opinion. There is a forum online full of people like you with so-called "Benign Fasciculation Syndrome" (BFS) who all think they have ALS, or that they are developing ALS, and are dying. They all have a TMS type syndrome and have conditioned a vicious cycle of fear and worry that causes their twitches to perpetuate, progress, and persist indefinitely, sometimes for years and years. They all have different theories about what they think might be wrong with them -- iron/vitamin deficiencies, chemical/toxin exposures, chronic latent infections, etc. -- but they all really just have TMS. Ofcourse, TMS is a hard ticket to sell to people so most of them end up learning how to live with the twitching and eventually realize that they don't have ALS or else they would have died a long time ago.
ALS is not a disease of twitching, its a disease of WEAKNESS. The weakness and twitching in ALS are progressive, the muscles are dying and once the twitches appear they don't go away. It only gets worse. The disease is usually relentless and the weakness advances to paralysis. These patients very rarely present to their physicians with a sole complaint of muscle twitching. Unfortunately, ALS is the first thing anyone ever thinks about in the face of fasciculations because it is such a devastating illness and muscle twitching happens to be one of the features of the disease. However, fasciculations are so common that I doubt there is a single person on the planet who goes through their entire life without experiencing them.
At their peak, I had them everywhere. I even had them on my tongue where some stupid neurologists will tell you its impossible to have them in the absence of motor neuron disease, but they just don't know what they are talking about. Once I accepted/believed wholeheartedly that they were another manifestation of TMS, they disappeared completely. I'll still get some here and there from time to time if I'm stressed out, but so does everyone. Twitching in the absence of atrophy and/or weakness is ALWAYS benign.
The problem is that us TMS people often have a problem with fear and anxiety and that is the PRECISE fuel for this thing. The fear of ALS, or MS (even though twitching is not a feature of MS), or anything else for that matter, is all your brain needs to prevent the twitches from going away. Once you are able to fully accept that they are TMS and absolutely nothing else and you believe that in your heart, they will go away. If you feel like you need an EMG to give you that confidence/reassurance then just go get one and be done with it because I know what its like to live with that fear and I promise you its not worth it. That being said, if your neurologic exam was normal then I promise you that you are fine and you can probably do without it. Symmetric brisk reflexes are very common in patients with "BFS" (I had them too) and are nothing to worry about. If there was anything in your exam that your neurologist thought was worth worrying about he would have immediately sent you for more tests. He didn't because he knew, as I do, that you are completely fine.
I hope you can now confidently move past this. You have a long and healthy life ahead of you. Good luck!
Best,
MK |
Edited by - mk6283 on 05/11/2009 20:40:35 |
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pan
United Kingdom
173 Posts |
Posted - 05/12/2009 : 01:40:14
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Having been a twitcher with an ALS fixation I know how awful it can be once you are stuck in that worry loop.
My twitching was (and still is) caused by physical anxiety / TMS and it took me a long time to undertsand and accept that the mental/emotional can have a physical efect on the body. Basically you have to realise that the starting causality of your condition in not physical/organic but mental/emotional. You are basically being conned by your moind and body into believing you have a physical problem.
I went down the vitamins, magnesium etc etc route and to be honest with you it is bull****! All that approach does it keep you stuck in the physical and stuck looking for improvement with the 'symptoms'...the bottom line is you are twitching, whilst it is annoying and sometimes scary these are emotional responses and you can change that approach, the problem at the moment is what you think the twitches indicate and this is what you need to rectify, the mental not the physical.
Google always highlights twitching as ALS/MND and this is outdated tosh. ALS is a disease defined by objective clinical weakness and not twitching. It is true that some (and it is only some) ALS sufferers do twitch but this is usually at an advanced stage and it is basically the horn cells of the dead muscle trying to fire itself back to life....do you honestly think you have dead muscles? Yeah, you will always here those one in a million stories of uncle Fred who was twitching before any weakness and was diagnosed with ALS but I take all this with a pinch of salt...because somebody has a benign twitch it doesn't mean they therefore cannot get ALS and I think that a 'twitcher' has the same tiny odds of getting ALS as anyone else.
Like I say I struggled with this for 18 months and it wasn't until I saw the elephant in the middle of the room that had been there all along that things made sense. I can't state this enough, remove yourself from the physical....treat nothing and just allow the twitches to continue. Once the twitches lose the fear response from you they become pointless and no longer fit for purpose and will no longer be the issue they are for you at this moment in time. |
Edited by - pan on 05/12/2009 01:43:40 |
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pan
United Kingdom
173 Posts |
Posted - 05/12/2009 : 01:46:36
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You may also find this useful:
http://www.anxietyzone.com/index.php/topic,9832.0.html
This is a thread I composed for an anxiety forum I post on and deals with health anxiety and the MS/ALS worry cycle. |
Edited by - pan on 05/12/2009 01:50:32 |
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mom2aidan2002
14 Posts |
Posted - 05/12/2009 : 12:50:53
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THANK YOU ALL SO MUCH! Thank God for Sarno and this forum. I can't even begin to imagine how debilitated I would be if I had not discovered his books.
I feel reassured. I think I just needed validation. I am going to work with this as TMS and beat it, just like I have the sciatica, headaches, paresthesias, TMJ, etc!
mom2aidan2002
p.s. Congrats MK on graduating med school!
p.p.s. My husband said to me last night, "You don't have ALS." To which I responded, "But how do you *know* I don't have it?" He replied, matter-of-factly, "Because you have been "dying" of one neurologic illness or another ever since I have known you...yet you are still here."
We have to laugh at ourselves sometimes, right? |
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sarita
130 Posts |
Posted - 05/12/2009 : 15:24:01
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your husband is right.
i have also been "dying" of it forever.
btw i have had twiching in every imaginable part of my body, WHEN I WAS WORRIED ABOUT THOSE DISEASES. and before i got depressed, i was twiching all over.
you got checked again, believe your doctor.
one neurologist once admitted to me they really sometimes dont know why certain things happen. i think this is where tms and its equivalents enter the picture...
i am so grateful i found sarno.
talk to that part of yours (unconscious)! refuse to let it take over. send it to hell. 
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Tippy
31 Posts |
Posted - 02/21/2012 : 11:29:42
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Oh God I thought I was the only one thinking ALS 10 years ago! TMSers of the world unite!
Stephanie |
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follow up on toe twitching (fasciculations)
