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Brit0321

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Let me start off by saying that I appreciate that this forum is here! Thank you to anyone that takes the time to read my post and respond. I know no one is a doctor or a neurologist but it does help to talk about the concerns. Ok so history:

I am a 29-year-old female that has been relatively healthy her whole life. Overweight and Do have a positive ANA so doc thinks I may have something autoimmune 2 years ago and just low vitamin d.

About two weeks before Christmas I had a CT done. Ultimately it ended up being a tumor in my parotid gland, Non-cancerous, and was removed. I was under General anesthesia. About three days before surgery I started getting muscle pains all over the body. I didn't pay much attention to it because I figured I was just stressing myself out. Like I said, I've always been healthy. Never had a broken bone no stitches, maybe has strep throat twice my whole life. I was very depressed when I found out about the tumor. I figured it was just stress playing it's role on my body. I've never been a stressful person, until two weeks before Christmas. I would get twinges of pain, they lasted for a couple of seconds at a time. My biceps were sore but got better in a couple days. About a week after surgery I started noticing the muscle twitching. Of course I asked my doctor if this was something normal after having General Anesthesia. I have never reacted well to spinal's or narcotics so I didn't think I do well with anesthesia. She didn't really have any answers and is sending me for EMG.

The twitching comes and goes. When I say that I mean, yesterday I maybe had 10 twitches all day long. Today I felt quite a few more. As I'm sitting here writing this I feel itwitches maybe like five in the past hour, give or take a few. The twitching is all over, my arms, my legs, my arms, sometimes I can feel them in my stomach, just everywhere! Of course when you Google twitching... well I know you all already know that. I am just so afraid because my daughter is only 20 months old. I will say though, that it kind of seems like the twitching is a little better than when It first started after surgery but they are still there. The muscle pains have mainly just been in my shoulder clavicle scapula area. It kind of feels like where I was having pain is where the twitches are now in my legs. Has anyone ever experienced this? Does this sound like ALS? Am I just crazy, idk but thanks for any opinions!
 

ShiftKicker

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Hi Brit-

There is a post titled "READ BEFORE POSTING" in the DIHALS subforum. I recommend you read it- it will have the answers you're asking for.

I will tell you that having 10 twitches in a day is completely normal for anyone. It simply does not signify anything at all. While you sound like you have some changes that you're concerned about, these are questions you need to ask your doctor/specialist after your emg. Having anesthesia and surgery is quite a shock to the system and can cause long lasting symptoms. Perhaps a conversation with the specialist who operated on you might be wise.
 

Brit0321

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Yes it is but I never really had twitches. In my head I know that it was probably just from surgery. My surgery was five hours, double the time that they thought. My tumor had been there from 6 to 10 years. I did speak with my surgeon and he was baffled, spoke to my ENT he is baffled, my primary doctor wasn't sure. I'm just wondering if maybe I had underlying MND that was maybe brought forward by the stress of worrying, stress of surgery and the use of General Anesthisa. It seems like when I ask anything about Nuro no one has any clue. It's almost like they don't want to touch it with a 10 foot pole. It is just disheartening, I was just wondering if anybody on here has either heard of this happening or I can maybe tell me if the symptoms or something that may or may not be indicative of ALS. I read things on the site but I also have read many things and they all seem to contradict each other. I also had rhabdomyolysis after surgery, ck was 1509. Surgeon only could tie it to the five hour surgery which I did too until the muscle twitching started...almost forgot about that. That was another reason I was wondering if it was mnd.
 

lgelb

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As others have said, twitching alone is indicative of nothing, least of all MND. It is very common to carry idiosyncratic pain through from pre-surgery into recovery, for many reasons. Referred pain post-surgery is a very real phenomenon.

Stretches that elongate the muscles (Pilates, ballet, Tai Chi) may help, as may massage and hot tubs. And supplemental D3 if you are not already doing it (not mega amounts, just something like 1000 IU twice a day in consultation with your doc). Since you have a toddler, I would also explore your hydration, nutrition and sleep. Certainly your status in regards to any evidence of an autoimmune disease should be followed, but there are many way for you to feel better regardless -- and one of the best is to play with your daughter.

Best,
Laurie
 

Brit0321

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Yes, I plan on starting The vitamin D. I have a friend that is a doctor that suggested it since my vitamin D was 23 but it was very low and to take 5000 units a day. He also said that he very well could be causing the twitching. It's just when you search twitching, motor neuron disease and ALS Are like the top things that pop up. Mainly Als. Thank you both for your kind words. I guess my biggest concern was if I did have this disease did the stress of surgery maybe exacerbate it or bring it out before it normally would've shown up. But what I think I'm hearing from you guys is that maybe my symptoms don't align with murder and Ron were abl but what I think I'm hearing from you guys is that maybe my symptoms don't align with MND or ALS?
 

lgelb

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You're hearing right. This is not an ALS story.

Rather than get dosages from your friend (too much vitamin D can be harmful as well), I would be followed by an internist in re the Vitamin D and the path forward from here.
 

Brit0321

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Thank you for the advice. I had my EMG today and half way through the Doctor said," well you'll be a boring patient for your neurologist!" I said oh yes I wanna be the MOST boring patient she has, lol. He said nothing was showing any type of progressive muscle disease, and nothing was showing anything MND or ALS. He did ask about back pain which I don't really have. He said an MRI of my spine would be a good next step.
 
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