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bmxtuffy

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Nov 25, 2015
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Learn about ALS
Country
Aus
State
Victoria
City
Melbourne
Hi. I am a 40 year old father of two who has not yet been diagnosed. I have never used a forum before, however my wife thought it might be a good idea in order to get some feedback. I really want to be as open as I can about what's been happening to me as I feel that will get me the best advice. Two years ago I was diagnosed with a primary anxiety disorder which I finally got under control in May of this year. I was going to the gym, enjoying a new job & had lost some weight. In June I was diagnosed with sleep apnea & began using a CPAP machine. A few weeks later I began to experience dizzy spells (which I have never had before) & suffer from cognitive difficulties. I was having trouble remembering things, focusing & it felt as if my brain was shrouded in a fog.

After a couple of weeks of enduring this I went to my GP & was told that my blood pressure was low (I used to have hypertension) & I should stop taking my BP medication. That was all good news until my dizzy spells & cognitive spells continued. Long story short... I ended up in the hospital for a week & was diagnosed with Orthostatic Intolerance. A week after coming home both of my calves began to ache all of a sudden (it came from nowhere) then three days after that the aching dissapeared & suddenly both of my feet began to buzz. The buzzing has never left me since & my legs ache pretty much all of the time. A couple of weeks after the start of the buzzing and aching I was told that I have restless legs & periodic limb movement disorder & was promptly put on Neurontin. Things only really got worse after that. Two weeks ago the brain fog that I had suffered in July returned (it was so bad that I really couldn't do my job effectively), i also noticed a fasciculation in my left arm, which has now progressed to all over my body (legs arms & back). In addition to that my right arm has spasmed twice as I was drifting off to sleep. I also noticed that my left arm felt weak a couple of weeks ago, but it seemingly returned to normal the next day.

I saw my Doctor & Sleep disorder specialist last week & they both mentioned the possibility of MS & ALS. However I've seen two other doctors since & they looked me in the eye & categorically told me that I don't have ALS & that my symptoms are a result of anxiety. had an Brain MRI at the hospital in July when all if this started, which was normal. I have also recently had an NCS on my feet which was again normal. I am having blood tests done & I'm scheduled to have another MRI in two days. I am acutely aware of how powerful anxiety is & understand fully it's affect on the body. However what I am experiencing is different & I know that somethings just not right. I am trying to be pragmatic about what's happening & would appreciate any feedback. Does what I have mentioned seem typical of early ALS? Do feet constantly buzz & legs ache? Do my earlier MRI & NCS results bode well for me? Are cognitive difficulties common early? Are body wide fasciculations common? My arm spasming as I was falling asleep also concerns me. Is that also a common early symptom? Any advice would be greatly appreciated as my wife & family are incredibly concerned for my well being. All the best & kindest regards. Rob.
 
Nothing you mention sounds like ALS to me. Your symptoms seem to be sensory. ALS is a disease of motor neurons. Nothing hurts, buzzes or feels different in any way. ALS is a disease where muscles do not work. There is a sticky at the top of this forum that should be read before posting, most of your questions will be answered there.
Vincent
 
Thanks for the reply. I have just read what you mentioned. I did forget to mention that I had my reflexes tested yesterday & they were incredibly brisk. The doctor once again put that down to anxiety. Once again, thanks for your reply.
 
Hi, I'm happy to tell you bluntly as a fellow aussie that not a single thing you reported (that was a good comprehensive overview too) sound even remotely like ALS.

I know that you might take the things you describe and think ALS, but the big difference for us is that we know ALS really well and your descriptions don't match at all.

I truly hope they can get to the bottom of whatever is happening for you soon, I am sorry you are going through such a long ordeal.

I would suggest you change your profile to say you are interested in learning about ALS because you are not being diagnosed with it, you are searching for answers.


Tillie
 
Tuffy,
I don't pretend to know if you have something wrong beyond anxiety, but I would explore four issues:

1) What your sleep data is like post-CPAP -- not just the OSA but other aspects of sleep like your respiratory rate, duration of breaths, etc. It is quite possible that your settings need adjustment and whenever I see new machine + brain fog, that is a red flag. I hope your sleep doc has looked at your data regularly but if not, I certainly would myself. Buy an SD card if you need to.

2) Whether you still have low BP, high BP or what. And I don't know what BP med you were on, but some classes it is unwise to abruptly discontinue (you are supposed to taper) and that too can bring on some of the sx you mention, as can high and low BP in themselves. Anyway, high BP usually doesn't just disappear on its own unless you have made a concerted effort at diet, exercise, etc. so I hope you are being monitored. And, again, a BP monitor for home is cheap and easy. The better wrist ones are even accurate these days for most people. You should take it sitting and just after standing and save your readings with those annotations.

3) Gabapentin (Neurontin) is not necessarily first line for PLMD/RLS and can potentially make them worse, esp. at too high a dose. Yes, arm movement in/near sleep is another sign of those. It is all a piece.

4) "Orthostatic hypotension" is just a nice way of saying your BP drops on standing, which there are many causes for, before they just shrug and d/c antihypertensives. If it is really central in origin and that disabling, you should have been trialed on a separate drug for that. Again, sleep/CPAP could be a proximal cause.

I would seek a second opinion at a regional or premier sleep medicine/neurology center, and bring a very accurate chronology of your symptoms and what has been tried. There's a lot of chicken and egg here. The good news is, you don't belong here, and I do believe your symptoms can be significantly improved.

Best,
Laurie
 
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