Brother passed of ALS in 2006 and I have twitches

[amitch1981]

Hello, this is my first post in the forum. My thanks to all of you for taking time to read and/or respond to my post.

My brother was in the civil engineering unit of the military and was exposed to 4 1/2 tons of urea without proper protective gear. He began experiencing ALS symptoms 1.5 weeks later. It took doctors 6 years to arrive at the correct diagnosis. He passed away at the age of 39 in 2006. There were two other men on his unit; they both passed away of cancer.

We have no other family history of ALS, so we have always believed this was sporadic form of ALS.

I'm 36-yers old, and at the end of April I began experiencing twitches in my left eye that spread to my right eye. Two weeks ago I began feeing them throughout my entire body (arms, thighs, abdomen, calves, temples, tongue, buttocks). Now they are pretty constant when I'm at rest.

I saw a neurologist and he performed a strength test - no weakness noted. Based on my family history he would like me to have an MRI and an EMG.

I haven't experienced any weakness, but I have experienced deep pain in my legs and arms. I am having severe anxiety as a result of this (which may account for the tremors I feel). I've also had a headache on the right side. Oh, and did I mention I've had an enlarged lymph node on my neck (painless and small) for multiple months (which I think is unrelated, but still....). I can't tell what's real anymore and what's not. My mother has a history of autoimmune diseases.

If you are willing, please let me know your thoughts on what I've shared. My sincerest appreciation for your time and thoughts.

 

[lgelb]

Columbus, very sorry to hear about your brother, but I doubt ALS is what you are describing. My advice is to follow through the diagnostic process you are on, while also looking for ways past your anxiety, without which you will surely feel better whether there are other issues or not. For example, a massage and a weekend in nature never hurt anyone.

I suspect ultimately a general internist or rheumatologist will be more on point than a neurologist.

Best,
Laurie

 

[amitch1981]

Thank you, Laurie. I greatly appreciate your quick response.

 

[amitch1981]

My brain and spinal MRI is tomorrow. My EMG is scheduled for Monday... I have had severe aches in my legs, hands, arms, lower back. I am extremely sleepy at night and when I wake up my arms and legs feel weak. Fasciculations everywhere...legs feel stiff.

When I sit or lay even my buttocks ache. Ugh! Anyhow, I am going into this with a positive attitude.

Thanks again for replying.

 

[Atsugi]

Mitch, your posts do not describe ALS. Good luck with the doctors. Sorry about your brother. I don't think you need to worry about contracting ALS, yourself.

 

[amitch1981]

Atsugi - Thanks so much for your response; that brings me comfort. Just had the MRI and I'm exhausted. Have a good day.

 

[amitch1981]

Hello all - I had my MRI and EMG - both are normal! They concluded that most likely it's benign fasciculation syndrome. I have a follow up with my neurologist in September. Having lost my brother to ALS 11 years go, this has been very emotionally draining to me and my family. I'm very relieved that the EMG was normal; however, I'm experiencing muscle cramping in my right leg (foot, calf, thigh). Sometimes I'll have pain in one or both arms. I've read that BFS can cause cramps etc. I'm constantly checking my limbs, noticing dents and just having a hard time. I know my heightened anxiety is due to my family history... Honestly, I may need to go on anxiety medication to help me through this. My doctor said we would keep an eye on this moving forward. Of course that made me even more anxious... God bless all of you and thank you for sharing your thoughts and encouragement.

 

[Lkaibel]

Mitch, I am sure the only reasons you got all this testing done was that the Doctor saw your anxiety and also your brother on the very off chance. Familial ALS is one of those things that tends to shout out - it would not just be your brother if your family carried the gene/s.

The Doctor wants to keep an eye on you because he is concerned about your overall well being, not ALS at all I would bet a paycheck. Enjoy your life.

 

[amitch1981]

Lkaibel - Thank you so much for your response. It really helped to reassure me, as I sit here now crying thinking about my big brother. Those of us who have been impacted by ALS know how extremely difficult this is. He is the only family member on both sides... My family was in denial for a very long time...And yes, my anxiety is at 1000 right now. But I have to get a handle on it b/c I'm not only impacting me, but my family as well. Especially my mom, and I don't want to upset her because she's already lost enough. Thanks again for your response! It helps me tremendously... God bless you and everyone impacted by ALS. I believe and consistently pray for a cure.

 

[Lkaibel]

Mitch, your words touched me. I believe sometimes grief manifests in your body. I am so sorry about your brother.

 

[amitch1981]

Lkaibel - I agree that sometimes grief does manifest itself in the body... I must admit, every day is a struggle for me. I have been experiencing cramps and tingling (maybe numbness) in my right leg, pain throughout my body. Quite frankly, I just don't know what to think anymore... Last night the pain was pretty bad. Having lost a brother to ALS is not making this any easier. I haven't experienced any weakness, so that's good... With all of the stress, I lost a few pounds, but I've gained them back. I've also tried to get back in the gym and my muscles seem to be building back up (I had taken a month off). So there are positive signs, but, I feel like every day is a waiting game. I wish I didn't feel this way... It's very difficult. Anyhow, thanks for your kind words. I really appreciate them.

 

[amitch1981]

Advice: Brother passed of ALS

Hi all- A few months ago I posted that my brother had ALS back in 2006 (age 39) and I started having widespread fasciculations ( legs, arms, feet, stomach, eye, tongue etc.) in late April/early May. I had an MRI/EMG (leg, arm, foot) in June- normal. The doctor said it was most likely benign fasciculation syndrome.

Since then, I've had pain/aches/ in my legs, feet, hands, arms, back. If I walk too long I feel like my legs get tired and I start getting cramps. I used to run, but I've stopped because my right leg just feels odd. I've also started to develop some swallowing issues- mainly with liquids. No choking, but I seem to get some acid that comes back up... a lot of throat clearing. No problems with solid food.

My follow up is in September with the neurologist. Do you suggest continuing to wait or making a follow up appointment sooner? My mother has autoimmune issues. Thoughts on an internal medicine doctor? I guess what's throwing me off is the EMG was on June 19... it's been only a few weeks. Would they not have found something? I'm just confused...

Obviously with my family history this just doesn't sit well with me... I'm getting a discouraged, but trying to stop feeling sorry for myself and enjoy life.

Thanks for any insight or thoughts.

 

[Nikki J]

Go see an internist. You had a normal EMG. The accepted interval in following abnormal ones is 3-6 months. Yours was not abnormal.

It does not sound like ALS to me.

I am sorry about your brother. I lost my sister last year to this - and our mother and her siblings before then. That is FALS. One relative does not FALS make and, in your brother's case, he had a huge toxic exposure in the military which seemed to bring this on according to your post. If you were not similarly exposed that is even more reason not to fear FALS.

See your doctor and let him/ her direct your care

 

[Clearwater AL]

Once again we have someone (you) who does not trust a Neurologist's diagnosis then comes here looking for some kind of reassurance of your suspicion that you have ALS.
(No one here is going to write... "Yes, it looks like you are probable ALS.)

("I had an MRI/EMG (leg, arm, foot) in June- normal. The doctor said it was most likely benign fasciculation syndrome.")

Your EMG was normal.

The nearly gold standard test for the determination/diagnosis of ALS.

Normal EMG = no ALS.

Sorry about your brother but... stop trying to convince yourself (and us) you have ALS.

Work with your doctors, and trust them to find a path to a normal healthy life.

Best wishes. (Sorry if I was too direct. Maybe I could have worded the first paragraph a little softer. Again, sorry about your brother but his exposure to such toxic chemicals may have been the trigger. That trigger has not been pulled on you. Hope your issues get resolved.)

 

[gooseberry]

amitch1981, Some things to consider.....dehydration can cause cramping, electrolyte imbalance, stress, lack of sleep, too much caffeine can all cause or worsen symptoms like the ones you describe. You truly do need to work thru the process step by step. Your brother had exposure to things you probably havent been exposed to......chemical toxins, body fluids might be just a couple of things.

You are getting yourself all worked up when you have had some pretty good test results. I would hydrate, meditate or relax your mind, and sleep. Those tjings will help. Also, if you are eating amlot of processed food, you might consider changing to a more whole food diet. Lots of chemicals in processed food.