Old 08-31-2008, 06:49 PM #1 (permalink)
heatherjoy
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Default Reason for Concern? Long Sorry- New

Hi,
My name is Heather and I've been reading this forum for several months and want to say what a terrific, helpful site this is! I've had "MS" like symptoms on and off for over 25years, and along with those I've had "widespread" fasiculations. I've wasted a lot of time worrying myself sick over MS (pre-internet, so wasn't aware that the fasics could be ALS). I've been blessed that most of the symptoms disappear for long lengths of time, but when they reappear, with the twitching, I usually have a new symptom or two with them. Then, I start the "worry cycle" all over again. This time, back in November, along with the twitching starting again, I started having frequent "sleep starts". When I fall asleep, I immediately wake back up with a jerk of the arm, leg, foot, hand and sometimes individual areas of the face. I went to a neuro who has scheduled a sleep study which is in a week.

I also mentioned to the neuro that I have had widespread and localized twitching on and off for over 25 years. He reassured me that it is BFS and not to worry. However, now I'm not sneezing and freaking myself out that I'm a "rare" BFSer who has the beginnings of ALS. I really didn't notice that I wasn't sneezing until I read it as a symptom of ALS; I've always sneezed more than the rest of my family and now they're all sneezing and I don't sneeze at all, (I've noticed this for about the last 6 weeks). If I feel the urge, I can initiate a sneeze or two or three by poking with my nail at the area below and outside my nostril, kind of like irritating it as would would tweezing a nasal hair, (sorry about being a little graphic)! Would I not be able to do this if my lack of sneezing was due to ALS? Also, at times, I feel I have a hard time pronouncing words and some difficulty swallowing (these 2 symptoms have come and gone, along with my other BFS symptoms but have had them only the last 10 or 12 years, at least that I've noticed.) I'm praying they're just anxiety induced; I also have severe GERD but read that causes another type of swallowing difficulty, not high up in the throat like I seem to get--way too much internet reading!) I'm so sorry, I know I must sound crazy, but I'm frightened and have been obsessing so much lately.

I've always had normal neuro exams, so never an EMG but MANY normal MRI's. I really don't want an EMG at this point unless absolutely necessary, as I'm 56 now, have arthritis from two severe car accidents, carpel tunnel, etc. I'm sure any abnormality would worry me more. I read your posts and you are such kind "together" people---I believe I've become borderline nuts worrying on and off all of these years. If anyone could kindly tell me about the sneezing I'd appreciate it. I know "I'm close to the edge" now and need to seek counseling as well. I've felt so alone with these symptoms and this fear of "not knowing what's wrong with me" for so long. Intellectually, I know how fortunate I am that whatever's going on hasn't physically disabled me yet but emotionally I'm a wreck. I apologize for the length of this and for how crazy I must sound. Thanks for any input you may have!
Heather p.s. I've also been diagnosed with fibromyalgia, (I have a lot of pain and have for many years); I'm not sure I believe that fibro is a real illness.
 
Old 09-01-2008, 10:43 AM #2 (permalink)
rose
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Hi Heather, welcome to the forum. Mostly I'm just bumping your post up as your questions are ones that I don't feel qualified to answer.

About your sneezes, I've never heard that before, (so now I'm sitting here at the keyboard wondering when the last time I sneezed was, LOL)

Hopefully someone with much more understanding of these types of diseases, will see your questions and respond.

Good luck to you,
 
Old 09-01-2008, 12:45 PM #3 (permalink)
heatherjoy
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thank you Rose, you're very kind. Heather
 
Old 09-01-2008, 01:30 PM #4 (permalink)
BethU
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Hi, Heather ... I'm a little confused. Are you worried because you are NOT sneezing? Is not being able to sneeze considered a sign of ALS?

Perhaps I've misunderstood your message.

I've just read this weekend that frequent sneezing IS sometimes considered a "symptom" of ALS. Anyway, here's my experience. Frequent sneezing is something I've been experiencing for several years. I have never mentioned it to anyone, as I figured I just have a really strange allergy that won't go away. I have about a half dozen unexpected sneezes a day with no apparent cause.

My biggest worry has been about getting the BiPap, as I can't imagine what my sneezes will do to the machinery! These are not dainty little "achoos."

So ... for what it's worth, I have ALS and I sneeze like crazy. If you're not sneezing, I'd say it's not anything to worry about. (Even if you are sneezing, my guess is that it's not a significant symptom.)

But fibromyalgia IS something to worry about. The medical profession certainly thinks it's a very real illness, and I sympathize with you so much on suffering with this for so long. Pain is HORRIBLE to deal with. I hope your doctors are treating your pain adequately. Are there any support groups in your area where you can do some one-on-one sharing?

In any case, you don't have to be alone. You can share here, and I'm sure you will get much more informed answers than I am able to provide.

Good luck and hang in there,
BethU
 
Old 09-01-2008, 01:37 PM #5 (permalink)
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BethU,

Don't be so worried about the bipap-easier said than done, I know. I've been using one for about 5 yrs now, and sneezing has never been an issue. I just take the nasal prongs off when I feel the sneeze coming!

And just imagine-if I don't know when I'm going to sneeze- thank God the tubing is connected to the maching, or I'd blow it halfway across the house with my sneezing!

Happy Labor Day Holiday!
brenda
 
Old 09-01-2008, 01:40 PM #6 (permalink)
BethU
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Brenda ... I see we are both Category 5 sneezers!

BethU
 
Old 09-01-2008, 03:50 PM #7 (permalink)
heatherjoy
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Default lack of ability to sneeze

Yes, it's what I'm thinking is a lack of ability to sneeze along with fasiculations and other symptoms, (most of which I've had on and off for years before though), but some new, i.e. unable to sneeze (a least I think I'm unable to, maybe I just don't need to and I'm obcessing). Also the "sleep starts"--- I'm sure they're probably a benign neuro thing going on (at least, I haven't heard that they're associated with ALS), I think the twitching, lack of sleep and pain are getting to me. Perhaps I haven't given the fibromyalgia diagnosis enough concern. I've had many doctors tell me it's not "a real diagnosis" yet, others tell me that it is. I have been trying not to take any muscle relaxants, pain mediations, stomach medications (i.e. donnatol for severe upper and lower GI problems), or sleep aids (don't ever take all of these meds every day though), this week in preparation for my sleep study next week, (I've told they could alter the outcome of the study). It's been very difficult not taking anything though...... I really appreciate all of you so much. Thanks for being here. Heather.
 
Old 09-01-2008, 04:37 PM #8 (permalink)
BethU
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Hi again, Heather ... Thanks for the clarification. I don't think not sneezing is a problem. As you say, you probably don't need to. It doesn't seem to relate to ALS at all.

If you're not getting enough sleep and not taking your pain meds, this is undoubtedly affecting your body and mood. Lack of sleep can even affect your clarity of thought. And getting no pain relief must be an enormous strain.

Was it the sleep study clinic that told you to cut out all these meds so far in advance? When I had a sleep study done a couple of years ago, they told me to take all my normal meds, including an Ambien or other sleep aid if I normally took one, as they wanted to evaluate my normal sleeping patterns.

If there's time before your study, I'd double check with them about stopping your pain and sleep medications so far in advance.

Hang in there ... I hope your worries go away when you are able to resume your normal medications and get some rest.

BethU
 
Old 09-02-2008, 02:39 PM #9 (permalink)
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Heather,

HI. I would try not to worry, if you have had this on and off for 25yrs, I think als would have hit by now. It is in some weird way a relief for me to read your post. If you have had twitching and weakness (wierd stuff) for 25 yrs, then maybe my 'wierd' stuff will last me anther 25 yrs! I am not discounting your pain in anyway by saying that. If you are very concerned, then go and get an emg.

What I thought the als sneeze was about is that when you sneeze you can fall or your head gets thrown foward.

Take care

a pri
 
Old 09-02-2008, 09:18 PM #10 (permalink)
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Hi Heather, the jerking thing right before you fall asleep is actually normal. Now it is not normal if it occurs during the day while you are active. The sleep study if not done at a great hospital will only tell you if you lost oxygen at different points during the night. Most local sleep study docs do not even know how to diagnose narcolepsy. So dont be surprised if your doctor does not mention anything about the "jerks." Let us know how you do, Good luck, Sam
 
Old 09-02-2008, 09:42 PM #11 (permalink)
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The sleep study I had done measured brain waves, not oxygen, so maybe mine was a different kind of study. They had wires all over my head ... took me a day to get all the goop out of my hair. They were testing for sleep apnea ... mini awakenings during the night that you're not conscious of ... not narcolepsy. I thought narcolepsy was a problem of falling asleep unexpectedly during the day.

My sleep study monitor was not at all interested in the falling-asleep leg jerks, either. They just wanted to measure the brain patterns once you were asleep: deep dreamless sleep, REM sleep, light arousals, etc.

Good luck, Heather! Hope you get some answers.
BethU
 
Old 09-04-2008, 05:28 PM #12 (permalink)
heatherjoy
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Default Thanks to All

Thanks to everyone for all of your kindness and the time you've spent to answer my questions. My sleep study is Monday and I'll let all of you now the results. Originally, my neuro wanted me to have a study due to my frequent sleep starts, but I also snore and find it's only gotten worse thru the years, so they're going to check for apnea as well. My neuro is the one who told me that if I took a sedative type medication before the sleep study the results wouldn't be accurate. I think that was because if there was any type of twitching some medications could affect the brain waves or twitching. I'm concerned because, when I have a period of a lot of sleep starts they happen so often, (the second I drift off to sleep I'm awakened again and again.) Also, I'm concerned bacause they're in my face alot, i.e. my forehead muscles will go up like I'm surprised, the sides of my mouth will move, etc. Most people have them in an arm or a leg. Maybe I'm just "overly aware" of them. I've seen my mom's forehead do the same thing when she's on the couch and she'll just wake up and smile. She can then drift off to sleep again though. I guess I'm just a wreck right now. My neuro did prescribe me ambien for the sleep study, instead of valium, etc. I took 1/2 of one last night and woke up after a few hours, got a drink of water, then wasn't able to go back to sleep due to the sleep starts. I've really noticed the sleep starts have increased since I stopped my nightly valium. I have taken a bit of my stomach and migraine medication this week (both of which have a sedative affect). I guess I can't just stop all medications. I did call the sleep center and they told me to take as little as possible of any valium or pain medication, (except over the counter), but that I could take ambien. I guess it's a different class of medication. Again thank you all so much....you're great. Heather
 
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