Old 01-13-2019, 03:29 PM #1 (permalink)
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Default Hesitant To Post But Very Concerned

I promised myself I wouldn't post here, but I caved to my stress over these symptoms.

42 year old Male. Initially I noticed a fine tremor in my left hand and feeling of internal tremor and starting having concerns over Parkinson's. In early November I started developing twitches in my legs. They came fast and furious, primarily in both calves but up and down the legs. I was in a period of major stress. I needed an MRI for unexplained headaches which came back clean. My sleep has been not great for over 2 months. With melatonin I fall asleep now, but wake up 3-4 times. I was more concerned about the tremors (didn't even think about ALS at the time) and knew I should see a MD.

Saw a neurologist (who I found out later, unfortunately, was a migraine specialist). He did the usual clinical exam, all good. Didn't see evidence of MND but in his report said he saw no tremors or fasciculations. This bothered me so in my follow up I brought video and and showed him the tremors/twitches. The appointment felt rushed and he told me to cut out caffeine and drink lots of water. This did nothing for me BTW. He also gave me a referral to a specialist 3 hours away if I wanted to pursue it. He suggested a wait and see approach.

I'm thinking I should see another neurologist. The fasciculations are not going away. I feel them most obviously laying in bed at night or in the morning. They are very noticeable to the eye. I get occasional twitches in my arm or forearm as well, nothing like my legs though.

Most concerning now is over 6 weeks month of dull aches in my legs and thighs. I know pain points away from MND, so I haven't put too much stock into it. However over the past 2 weeks, I have been developing cramp like feelings (not a full charlie horse) in my hands and both feet. Occasionally I get the same feeling in a calf. I have a burning type muscle pain in the top of my forearm (near my elbow) but I know is not related. I have about 7lbs of unplanned weight loss over the last 6 months. I haven't exercised in the last 2 months.

I have read the stickies, but also when searching, there are PALS here who clearly had fasciculations and cramps at the beginning with no other symptoms. My takeaway is that it happens but is rare, but apparently not rare enough since there is evidence on these forums and case studies online.

Am I crazy for going to get a 2nd opinion? The non stop twitches with bilateral foot and hand cramp tendencies has raised my concern level very high. I don't want to go down the EMG path - I see people here who have had 4 or 5 EMGs! I don't want to get stuck in that cycle, but when a simple google result for als turns up fasciculations and cramps, I can't convince myself I am worrying over nothing.

Thank you for taking the time to listen.
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Old 01-13-2019, 04:06 PM #2 (permalink)
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Default Re: Hesitant To Post But Very Concerned

Did the neuro screen you for RLS or related disorders? Does the twitching/cramping get better with movement? Have you tried exercise at all in the last two months?

I don't see any reason to suspect MND, contrary to Google's fear-mongering, so I would try to see what might help you feel better first, at a minimum more movement, maybe massage, stretching morning/night, etc. For sure, anxiety about what you think you might have is not going to relax your muscles...

What happened with the headaches -- do you still have them? Why do you think you are waking up so often? Is the "major stress" really past? These are all issues to think about.

Best,
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Old 01-13-2019, 04:09 PM #3 (permalink)
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Default Re: Hesitant To Post But Very Concerned

Internal tremor, headache, eye twitches, dull aches, "almost" cramps, burning, bilateral sensations/symptoms. These are your stated symptoms, but the READ BEFORE POSTING! Answers to common concerns about possible symptoms! addresses these already as unrelated to ALS. ALS has a very particular constellation of symptoms, and you really haven't listed any that raises a flag. Not sure what you have- for that you will have to see a doctor and allow them to continue pursuing a cause.

You observe twitching, which are as common and as general as "cough" when it comes to diagnostic concerns. You state fasciculations, but those can only be identified such, and as significant/concerning, by a neurologist. It's all just twitching till then!

Best of luck with your doctor, but you can knock off this forum from your list of places to be.

Take care
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Old 01-13-2019, 04:33 PM #4 (permalink)
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Default Re: Hesitant To Post But Very Concerned

Thanks for taking the time to respond Laurie. When I flex my calves the twitching seems to stop, and I don't notice it while walking (could be there?), but immediately upon sitting or laying down it fires up. Although last night my shin area was twitching and I couldn't stop it. The cramping is relatively new (< 2 weeks) and doesn't seem to get worse or better with movement. They are definitely cramps, but I gave that disclaimer because they are not debilitating - I don't want to overstate. But they are cramps and they have been popping up in both feet and hands. Searching this forum's history was probably not a good idea as there are cases like that.

No screening for RLS. The headaches have subsided quite a bit, still have little waves. Didn't mention, but the MRI did show an ear infection which was treated and relieved a lot of that. Leading up to that, the doc ordered the brain MRI to rule out tumor - which is what put me into that major stress mode. Felt very relieved when that was not the case.

I can't explain the sleep pattern. I don't wake up freaking out or in panic mode. When I wake up I still feel tired but look at the clock and get frustrated as you can imagine. And sure, then I'm trying to get back sleep and feel my leg twitches firing all over the place.

I don't know - I just feel like seeing a neurologist with more experience with these types of disorders would be more appropriate. Who knows though, maybe I still won't find it enough.
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Old 01-13-2019, 04:37 PM #5 (permalink)
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Default Re: Hesitant To Post But Very Concerned

Hi, thanks for replying. I understand about the stickies. I've had twitching at random times since childhood - I know that means nothing here, of course. But, I'm talking about non-stop localized twitching for months and now cramping. Those two symptoms are why I am here. I just listed the other stuff for full disclosure. And, searching this forum shows PALS with the same experience - hence my worry.

Appreciate your time.
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Old 01-13-2019, 04:50 PM #6 (permalink)
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Default Re: Hesitant To Post But Very Concerned

Cperson, last sentence, 5:33 PM post…

“I just feel like seeing a neurologist with more experience with these types of disorders would be more appropriate. Who knows though, maybe I still won't find it enough.”

(“…maybe I still won't find it enough.”)

That may be the underlying problem of your issues. Anxiety.

"Underlying"… used to describe something on which something else is based.

Do see a Neurologist but...

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Old 01-13-2019, 04:52 PM #7 (permalink)
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Default Re: Hesitant To Post But Very Concerned

What is it you CAN'T do. Twitching and cramping means nothing in the small picture. If, in the bigger picture, your twitches and cramps were accompanied by an inability to take a heel to toe step, button up your shirt or pants, clip your finger nails, turn a door knob, open a water bottle, tripping, falling, slurred speech etc., then you might be on to something. Since you have none of these, your fears are unfounded. As for PALS on here saying they started withe twitching, their twitching would have been accompanied by other things, such as what I listed above.

As previously mentioned, you can knock ALS off your list. Good luck to you and take good care.
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Old 01-13-2019, 06:09 PM #8 (permalink)
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Default Re: Hesitant To Post But Very Concerned

@Bestfriendstilltheend

I understand. I do not have any failing at this time. Had a clean clinical exam w/ strength tests. My questions was more about if a 2nd neuro opinion makes sense with the continued localized twitching and now cramping - especially considering that has been an initial onset of symptoms with others (with no weakness). I get the gist from the replies - seems the answer to the 2nd opinion is no.

Thank you.
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Old 01-13-2019, 06:45 PM #9 (permalink)
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Default Re: Hesitant To Post But Very Concerned

Yes, you should be screened for RLS.

The recommended "single question" is simply:

“When you try to relax in the evening or sleep at night, do you ever have unpleasant, restless feelings in your legs that can be relieved by walking or movement?”

But that does not mean you have symptoms only at night or in your legs. It just means that is always part of it.
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Old 01-13-2019, 07:00 PM #10 (permalink)
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Default Re: Hesitant To Post But Very Concerned

It is very common when you dig deeper into the anecdotes to find that these people who only noticed teitching and cramping were found on their first neuro exam to have abnormalities including clinical weakness. And of course there are millions of people who experience twitches and cramps whose stories will never be told here because it never occurred to them to worry and it went away or stayed the same.
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Old 01-22-2019, 07:33 AM #11 (permalink)
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Default Cramping Question

Is there a certain type or severity of cramping that is associated with initial onset symptoms? In addition to my twitching, I have been dealing with cramping in both foot arches, and almost cramps (not sure how to describe it) in my hands near the fleshy base of the thumb. This has has been ongoing for a little over 2 weeks.
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Old 01-22-2019, 07:40 AM #12 (permalink)
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Default Re: Hesitant To Post But Very Concerned

Please stsy on thread. Refer to the post read before posting for forum rules
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Old 01-22-2019, 11:04 AM #13 (permalink)
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Default Re: Hesitant To Post But Very Concerned

Cperson, you said “I do not have any failing at this time. Had a clean clinical exam w/ strength tests.”

Ok, a clean clinical exam and no failure rules out ALS. Why would you even be worried about ALS, especially when a number of knowledgeable people on this forum have tried to reassure you you don’t have it?

A rational person would be reassured and move on. The fact that you’re not suggests your mind is running away with anxiety.

This forum is here to support people with ALS and their families. It is not intended to provide ongoing support and emotional hand-holding for people with health anxiety.

Anxiety is a significant problem. I urge you to seek help for it and move on so you can enjoy your life. Best of luck.
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