Old 02-22-2009, 10:55 PM #1 (permalink)
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Default Progression of ALS

I am undiagnosed but seeing a neuro in a couple of days. My GP did not think much of my random twitching and stiff right hand when I saw him two weeks ago but I asked for the neuro because things kept getting worse. In fact, since I posted here for the first time about a week ago, my right hand has gone from a little stiff to weak, clumsy and sometimes frozen fingers. My right arm muscles - forearm and bicep - feel weak and heavy. The almost constant aching in both calves has now has centralized on right outer ankle/foot with feeling of stiffness and a sensation of weakness although I have not fallen (but keep expecting to) I was just diagnosed with sleep apnea last week. I have no idea if that could cause my limb symptoms. My question is whether ALS could happen so quickly. I know everyone is different and I am not looking for anyone to say "yes" or "no" definitively - just wondering what the neuro might think. Reading a review of him, one patient said he was dismissive and I want to be sure I am pushy if I need to be! Any ideas/suggestions?
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Old 02-22-2009, 11:48 PM #2 (permalink)
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Hi lawmom. You'd be amazed at how peoples symptoms always get worse after they start posting here. I'm not being dismissive but you've probably sttarted going over every inch of your body with a fine tooth comb since you noticed the first twitch. Your symptoms don't really sound like ALS. Wait and see what the Neuro says. Don't tell him you've been looking up ALS. Try to relax.

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Old 02-25-2009, 07:19 PM #3 (permalink)
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Default Al:

Went to neuro today. He did all the physical tests (Babinski, Hoffman, reflexes) then, on my right arm that has been feeling weak and clumsy, he did the electrical shcocks and the needle stuff. All he found was carpal tunnel irritation. I have an abnormal disk at the base of my neck (C5-C6), a "c" curve to the right and another in the lumbar area (discovered by chiro friend who did an x-ray for me) so neuro suspects the arm stuff may be pinched nerve. BUT both of my legs showed brisk reflexes (opposite leg jumped a little when did the little hammer on my knees) and a diminished sensitivity to cold. Could not really feel cold instrument he put on my foot until he moved it up to mid calves. Strange because my legs are not really achy anymore and my feet have been feeling a little funny (like they are waking up from being asleep - not pins and needles, just pressure) but that's it. I flat out asked if it was ALS and he said all the tests he did "ruled that out. It is not MND, but it is neurological." I asked about MS and he said that was a possiblity. He also said he has seen weird neuro stuff with untreated sleep apnea (just got diagnosed with that last week) so it could be gone in a few weeks with my new CPAP. Anyway, doing MRI to check the brain for lesions and the spine for stenosis, degeneration,etc. I went to a Clinic that specializes in MD/ALS so I have no reason to doubt the "rule out" on ALS. I realize only here is a possible MS diagnosis good news. Wondered if you had any thoughts since you have been kind to respond to my anxious questions.
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Old 02-25-2009, 08:47 PM #4 (permalink)
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I'd be hoping for the cpap to be making a big difference soon. MS is as much a stinker as any MND; I wouldn't hope for it all (unless, as you said, you other option is ALS).

No, I'd really be expecting things to clear up now that your body is getting oxygen while you are sleeping. If I were a betting man, I'd place my bet on you getting a whole better very soon!

No MS! No MS! (Please get those two letters out of your head!)

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Old 02-25-2009, 09:17 PM #5 (permalink)
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Hi Lawmom,

I am curious about your sleep apnea. I was tested very early in my hunt for an explanation of my symptoms and was told I have "mild apnea". At the time, I just disregarded it feeling it wasn't important enough or bad enough to warrant intervention. As time went on (10 months) and I began to feel worse and had new things show up I started to think that maybe I should do the responsible thing and pursue every possible avenue to be healthy, even if it included treating the mild apnea.

Met with the sleep doctor just yesterday (a wonderful wonderful guy, and his resident was awesome, and even the med student lurking in the corner was great....finally! I have had some doozies) He is aware of my symptoms and while he specifically said he didn't think any of them stemmed from the apnea, he believed it was very important for me to do an 8 week empirical trial with CPAP, show that there is no change (or maybe there will be), and then the latest doctor in my round of doctors can be reasonably assured, with evidence, that the apnea is not causing the problems. He also said I may find that I just feel better in other ways not necessarily related to my current complaints, and that I will choose to continue with the CPAP (can't imagine continuing with that instrument of torture if not required).

So my question...did your doctor elaborate on what the weird neuro stuff might be that stems from untreated apnea, and did he say if that apnea had to be more on the moderate to severe side for the weird neuro stuff to show up?

Is your apnea mild, moderate, severe? How were you feeling-along all those lines they ask about when doing a sleep study?

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Old 02-25-2009, 11:31 PM #6 (permalink)
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Default Thanks for the replies...

Isn't it strange what we wish for when one option is unthinkable? I will be hoping no MS as well, especially now that ALS (as far as I can be sure) is off the table. Hopefully, I work my way down to a hangnail Thank you for caring about my diagnosis - everyone on the forum is amazing and strong..

Let's see - the apnea...I think I have had it about 6-8 months based on my dreams of not breathing and waking myself up by snoring. I honestly did not think about apnea until my husband told me I stopped breathing. I told my GP about my legs aching and hand getting numb and stiff and he was the first to suggest that apnea could be the cause of the legs - although he might have been thinking I had RLS, which I don't - and carpal tunnel -partially correct - was the cause of hand issues. He sent me to sleep study.

I did two nights and a whole day of sleep study with no info from the doctor directly as to the exact findings. The CPAP supply company called after the first test to talk about a machine and that is how I knew I had apnea. She said, "I have your report. Want me to read it?" From what she says and doing some research, I would say mine is mild to moderate. "12 episodes, one event lasted 21 seconds. Oxygen level went down to 93%." When first met with pulmonologist, he thought my symptoms - legs aching and weird feeling - could be apnea/low iron. My ferritin level come back very low normal and he put me on iron. Of course this is all before the neuro visit.

Anyway, I see sleep doc tomorrow morning and will definitely talk to him about the neuro thinking it could all be related. May ask him to check my reflexes and sensations, too. The neuro was not specific at all about what weird things he has seen related to apnea.

I know this is complicated and I am really tired from lack of sleep at the "sleep" study

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Old 02-26-2009, 07:34 AM #7 (permalink)
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Hi Lawmom,

Our apnea is similar, I had 11 episodes, but my oxygen dropped to mid to high 80s; can't remember the term. I think you are in the mild range as well. I haven't started mine yet because I can't seem to remember to get the distilled water, but since they can check your compliance I better get on the ball.

Here is hoping for your hangnail (funny story: had a loved one recuperating from organ transplant, had minor illness, was at home, but hooked up to equipment, had home care nurse, etc. Well I had a hangnail that burned and throbbed and I went on and on whining about how much that damn hangnail hurt, would it ever end? Oh, the suffering! All to the poor SOB in the hospital bed in the living room, with the 2 IVs, and the nurse fussing over him....could I be anymore insensitive? We still laugh about it....)


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Old 02-27-2009, 07:09 PM #8 (permalink)
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Default Back as promised...

Saw my sleep doc yesterday. He confirmed my apnea, said he was surprised that I actually had it. I guess my body build and my vague symtpoms had him thinking I might just be a restless sleeper. Anyway, I also told him about the neuro appt. I actually got kind of emotional because, even though the ALS thing was (hopefully) ruled out, there are a lot of other bad things that could be lurking. Sadly, he did not lift my spirits much. He said leg aches might be apnea but neuro signs like I have (reflexes and lack of cold sensation) do not fit as far as he has experienced. I asked him to check my reflexes - which he gladly did because he said he is really an internist at heart but a pulmonogist by specialty. He said they were brisk but not off the charts. He could not (or would not) say my opposite leg reacted when he struck each kneecap. He did as Lydia's doctor did -told me to try the CPAP for the overall health benefits and maybe it will give a clearer picture of the neuro issues. He also told me my doctor (who is part of the same system of doctors) was a good one but another doctor in the group is the neuromusucular gugu and whatever the MRI shows - good, bad, ugly - I should consult him for diagnosis and treatment. On another note, however, I feel like my symptoms are worsening. Also, another post today - by tag0620 - said her husband got a confirmation of sorts that his symptoms might be ALS and he was having the same issues feeling cold in his feet. I am interested in seeing what others say about that. I am not trying (don't want to) undermine my neuro's rule out of ALS but it is a little disturbing.
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Old 02-27-2009, 09:32 PM #9 (permalink)
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Lawmom,

Hi, read your post...be careful thinking about Tag's husband's feet, comparing to yourself, and getting scared. He has lots of other issues as well (many that point away from ALS, cross your fingers). The feet thing-lots of people get it. Even at my 2nd neuro, I couldn't feel the vibrating on calf but when she (the fellow) put it on my arm I was surprised to see it was still going. Both she and the head neuro didn't seem concerned. Try not to worry, and keep me posted on your cpap trial. Still have to get my distilled water!

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Old 02-27-2009, 10:08 PM #10 (permalink)
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Default Lydia

I know you are right about comparing. It is a losing game! My symptoms seem to be getting worse by the day, though. Right now my right arm and both legs are crampin and twitching. I feel like my whole body is electrified. Maybe aggravating by fear and anxiety. As far as sensation, I think I "passed" the vibration test - he asked me to tell him when it stopped on one toe. Then he put on the other foot and I felt nothing. You said lots of people get the feet thing. Is that an ALS thing or generally? BTW - fist night with bipap (got that instead of cpap) was good. No claustrophobia but forgot the distilled water, too. Hubby had to go get it late at night! So, tell me how you got here?
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Old 02-28-2009, 07:47 AM #11 (permalink)
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When I said lots of people get that I was referring to the friends and family and even strangers that I find myself quizzing lately about their experiences with neuros...Many of them comment about having a discrepancy between feeling the vibration on one part of the body and on another. None of them have any meaningful or serious diagnosed. But the results of that test must mean something, otherwise why do it? But I have nothing substantive to base my comment on...I should be more careful! I just don't want you to focus on that one finding and assign it perhaps more weight than it merits. In my own personal experience, and of that of some that I know, it has had no practical significance.

As for whether or not it is an ALS thing, I don't know...while I read here regularly I can't really say other than it seems like a sensory (as in loss of some sensation) issue and I think sensory issues point away from ALS. Someone will correct me if I got that wrong.

I have had considerable experience with cramping; thankfully mostly quieted down now. Drink a lot of fluids. For me, cramping became a signal to stop what I was doing and to just rest...even if it meant a full day. But my cramps were pretty constant and looooonnnnnnggg.

Why did you get Bipap, not CPAP? I know when I had my CPAP overnight trial, the machine said Bipap but it can be set to be used as CPAP. The tech was impressed I caught the difference...only because of my constant reading on this forum!

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Old 02-28-2009, 09:27 AM #12 (permalink)
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Default Lydia:

I didn't choose the bipap, they chose it for me. When I woke up from my overnight trial with the machines, that is what they had going and that is what the doctor ordered. Might have been because I got congested that night (which I dod a lot at night) and maybe it was easier for me to breathe out against lower pressure. Guees I should have asked!

Have you not been diagnosed with ALS? If not, what do docs think is going on?

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Old 02-28-2009, 02:16 PM #13 (permalink)
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I was cleared of lower motor neuron stuff with a clean EMG back in September(?). The rest is a long and getting to be boring story. I am doing you a favor by sparing you and all the other readers. Right now I am officially described as Low B12, having Benign Fasciculation Syndrome, and am being treated for an uncomfirmed mitochondrial disorder on the off chance that is what I have. I have also been told I am suffering from unconscious stress and that I must be depressed, despite feeling pretty chipper (all things considered).

I go back on Monday and will hear whether or not a mitochondrial disorder will still be explored (I have been avoiding all my doctors since an upsetting visit in December, but am up to start again....). This seemed very possible at Xmas, but new developments suggest....well, I have no idea! I am embarrassed about going because my one doctor has called me 4 times and I just ignore him and he is the only one that doesn't upset me! And now I have behaved childishly with him...but it felt so good to not be thinking about all this stuff. Even just knowing the visit is coming I start to obsess on how I feel...

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Old 03-02-2009, 12:28 AM #14 (permalink)
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Hi lawmom1, sorry for not getting back sooner. I have heard of the sleep tech's switching from CPAP to Bipap during the night to see which your CO2 and O2 levels are better at. That may be why you ended up with the Bipap. Sounds like you're getting some answers which is good and bad. You say your symptoms feel like they get worse daily. That's not normal for ALS, it usually sneaks up on you. So maybe that's a good thing going for you. Let us know how you make out.

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