Old 09-22-2016, 08:48 PM #1 (permalink)
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Default Possible familial ALS?

Hello,
First I apologize if I'm posting in the wrong section I am new to this site. I am posting in hopes of getting some opinions from those who have ALS or are wondering themselves.
My grandmother passed away from the disease In 2001. From what I have read familial is rare but it is concerning. I am 34 and it all started maybe 6 months ago but I am unsure of the start as I initially thought this was all neck related. I had been having a tight neck and upper back and was put in pain management. Now if I don’t count my neck as the start of this I would say in July of this year was. I got very fatigued and began to trip and drop things more than one should. To make this easier I will list my symptoms the best in order the best I can remember:

Extreme fatigue
Upper back pain/ intermittent arm pain
A feeling deep in my thigh of a little jolt
Leg pain mainly calves
Start tripping and dropping things frequently
Noticed increased weakness Mainly my right side
Muscles begin to jerk/twitch by themselves in legs at first then moving upward to become widespread
Difficultly opening jars or lifting things
Joint pain and morning stiffness
Loss of some sensation on skin throughout body /intermittent pins and needles
Intermittent Burning pain, stabbing pain, itchy legs, feelings on bugs on skin or little tickle sensations under skin
Increased heartrate with exertion or sporadically at rest, intermittent dizziness, air hunger
Intense Sweating episodes followed by extreme cold.
Mental confusion/ cloudy or absent minded.. "Such as getting up and forgetting why I got up.”
Headaches /intermittent increased sensitivity to bright lights or normally ignored unexpected noises. “The ice maker made me jump” etc..
Mild jaw pain
Tongue fasciculation’s that I hadn’t noticed until looking at my tongue while brushing teeth
Voice changes that are becoming more frequent / a feeling of something at the base of throat where it meets the chest. Voice Sounds similar to spasmodic dysphonia.
muscle atrophy that is visible in right leg
pain when using fingers for things like using tweezers or handwriting, even typing to long.

To me some of this does not match what I've read about ALS but it's so hard to tell. I have seen a nuerologist I have an Emg on Monday. I've had MRI of brain, brain wave test, MRIs of my spine and a lumbar puncture..(which by the way was more painful than giving birth and took 5 tries !) all tests were relatively normal. Aside from some little abnormalities and idiopathic ones mentioned that I don't understand. So if it was not showing on any of those then it wouldn't be ALS right ? I know it's something I just don't know what... Any input is appreciated.

Thanks,

Linda
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Old 09-22-2016, 10:39 PM #2 (permalink)
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Default Re: Possible familial ALS?

Hi Linda,
thanks for all the detailed information.

Please read the sticky post at the top of this forum section titled READ BEFORE POSTING. It will help you a lot. You will also note there that other people scared of ALS are not allowed to answer your post here, only members who are dealing with ALS. Otherwise this just becomes a terrible place of scared people comparing symptoms that helps no one.

You have some concerning things happening, but so many point away from ALS, so that's great news to focus on.

I'm sorry about your grandmother, but can assure you that if she is the only family member who had ALS you have as much chance of developing it as I do after losing my husband. One person in the family does not make you more even a tiny bit more likely to develop ALS.

Bulbar ALS does not sound at all like spasmodic dysphonia, so that's good news for you.

Over this weekend just spend as much time as you can enjoying life to the max. Put ALS aside and do things you enjoy with people you love. Let us know after the EMG - remember this is a tool used to assist diagnose many things, not just ALS.

All the best.
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Old 09-23-2016, 01:09 AM #3 (permalink)
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Default Re: Possible familial ALS?

Lindanickole, I wouldn't worry about ALS if I were you. I looked over every detail of your post, and only tripping had anything to do with ALS. Even then, there are lots of reasons for constant tripping.

As Tille pointed out above, having one family member with ALS does not increase your chances of having the disease. However, a lot of people, myself included, will get worried about it, and maybe even show symptoms, just because we're worried about it.

Half of your list looks like stress reactions.

EMGs are used for lots of things, so if you want to worry, worry about something that's not fatal.
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Old 09-23-2016, 06:30 AM #4 (permalink)
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Default Re: Possible familial ALS?

Thank you both for the responses

Last edited by Lindanickole : 09-23-2016 at 06:44 AM Reason: Duplicate
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Old 09-23-2016, 06:39 AM #5 (permalink)
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Default Re: Possible familial ALS?

My nuerologist is the one who brought up ALS. What was also mentioned is MSA. My right leg is bad a far as atrophy goes. I didn't want to argue with the nuerologist so I didn't say anything, but in my mind I knew she can't be right based on what I've read. I also have been diagnosed with osteoarthritis and cervical stenosis so it was after I told her about those things she felt it was ALS as the other conditions would explain the pain part, but the emg Will Clarify. My grandmother is the closest relative I've had who died from ALS. Other relatives on both my mother and fathers side have had it but they have to be a very close relative correct ? I can no longer work because of my weakness, I just wish I had answers already. You know I read Lyme disease is Similair to ALS, maybe that's a touchy topic, but I've read people had Lyme and were cured. Another possible thing that crossed my mind was that this was vaccine related because I had 2 doses of hep b vaccine in June and July and following that is when my health declined rapidly. I guess I just pray whatever is wrong with me is something that can be managed. You all are so brave, I watched my grandma deteriorate and it broke my heart. It was harder for her to see the pain it caused us than the pain she felt of her disease. I truly hope they find a cure for ALS.

Last edited by Lindanickole : 09-23-2016 at 06:44 AM Reason: Fixed duplicate
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Old 09-23-2016, 06:44 AM #6 (permalink)
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Default Re: Possible familial ALS?

Hi. What did your clinical exam show? Confirmed weakness, confirmed atrophy, abnormal reflexes, spasticity, clonus?

Re FALS the technical definition involves 2 people diagnosed that are 1st or 2nd degree relatives your grandmother is 2nd degree as would be your aunt or uncle. When you say relatives ( plural) on both sides how are they related to you and each other by blood. What happened to your parents? In order for you to be genetically affected by FALS from your grandmother your relevant parent would have to be a gene carrier

I am sorry your neuro brought up ALS. Without knowing the exam results and without seeing you it is hard to know whether your neuro is one of those who quickly brings up worst case. If you are told ALS you need to get a neuromuscular opinion. It has happened that the neuromuscular doctor has overturned a diagnosis more than once for members here.
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Old 09-23-2016, 08:39 AM #7 (permalink)
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Default Re: Possible familial ALS?

Confirmed atrophy, confirmed weakness and yes hyperflexia was confirmed. This is TMI I am sure but they also at one point checked my anal tone when I was convinced this was spine related, and it was increased she said that's not normal. but that still does not necessarily mean I have ALS. As far as family my grandmother had it on my fathers side. On my mothers side her sisters son has it and her brothers daughter, which would make them my cousins not my immediate family. And if it's not on the MRI I don't see how it could be. I'm trying not to worry but I also know my body is currently failing me. I read about a rare disease called Morvans maybe that is it, I'm sorry for those who suffer ALS but I'm not ready to hear I have that. I am a single mother to a very young son who needs me I can't even fathom this.

I remember some other details. I also have repetitive type of injuries they would call tennis elbow but it's not from intended repetitive use as I don't do much bc of the Weakness in my fingers and arms. And I'm not sure if this matters but I only notice my body twitching when I am at rest and I mean it's everywhere even in private areas. my tongue is always doing that weird thing but I don't feel it I only see it.

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Old 09-23-2016, 07:30 PM #8 (permalink)
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Default Re: Possible familial ALS?

i certainly hope that it is not ALS. Although some people have findings on MRI some ( most I think) do not. If there is a genetic issue to worry about it would be on your mom's side with two relatives. The common relative of course would be one of your maternal grandparents. Did either of them or your relevant aunt or uncle have any neurological disease? And how is your mother's health?

Good luck with the emg. Please let us know
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Old 09-24-2016, 02:06 PM #9 (permalink)
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Default Re: Possible familial ALS?

I'm not sure of the family history other than being told ALS is on my dad and moms side 2 active cases being on my moms side that from what I was told stems from my moms , moms family. My mother has had vulva cancer and she has UC , brother has crohns. I don't want to get upset about this, I feel the nuero should not have even brought it up before the EMG it has just cause me to be overly stressed out and crying which only exacerbates issues. Some reasons I do not believe this to be ALS are that I have headaches often, i have formication (sensation of ants or in the form of itchiness) I have problems regulation my body temp I get profusely sweaty and then extremely cold.. None of that is even remotely possible with ALS right ? I had also had reduced sensation in my arms (pin prick test) my muscles don't just twitch they jerk at times and when I attemp to flex them I feel the muscles trying so hard but they are weak and I can feel the vibrations in my legs of weak muscles trying to flex. Also the stabbing pain and joint popping also does not seem ALS like. So can I pretty much safely assume this nuerologist is just jumping the gun and I would be safe to assume I do not have ALS. Even so I realize there is other fatal diseases that I could have but I just want to know and then find peace with whatever is happening. Monday needs to get here !!!
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