ALS Fear

[mihu]

Hi Guys,

As I say... I guess it's "New Twitcher" in town.

This year I had a bad period as 4 of my friends passed away in a short interval for different reasons like :
- Last stage of cancer already found ( Didn't resisted chemoteraphy )
- Hearth Attack
- Stroke
- Hepatic cancer

They died within 4 months.
I started to think that I'll be the next, however I overcome this fear of dying of a hearth attack by taking XANAX and vitamins.

After these I started to have twitches in calves 24/7.
My DAD died of ALS in 2003 and went into a depression.

Fortunately, the US medical system can give you fast access to neurologists if you pay.

I saw 3, all of them have given me a clean bill of health.
A super meticoulous clinical exam and an extensive EMG which showed nothing to do with ALS ( No fibrilations, positive sharp waves , no spontaneous activity ).

Unfortunately, googling and seen lot of reports of people who initially had clean EMG's and they were diagnosed 8 months to 1 year later is still killing me.

No weakness, nothing pathologically now. I am only 2 months of twitching so I think time will make things better...

I really need help and not sure where to get it. I am completely lost.

[Fishmanpa]

Please read this...

Positive thoughts

[mihu]

Thanks. I saw and I had multi-motivational articles. And everything so far, including the test, clinical exams are in my favor.

My neuro-muscular specialist prescribed me Zoloft 50mg/day for 2 months, but he said that I can still cure myself from inside and didn't pushed to get it, he just let this to be my decision.

However, nothing is wrong so far, it's just the fact that I've read about people who started to twitch and finally were diagnosed even they had clean EMGs . Of course, logically and objective I know the truth, but inside me now it's a fight between objective and subjective mind.

@Fishmanpa thanks. I will keep reading this over and over.

Just need toughs from other in case somebody was coping with this

[Fishmanpa]

You've had some rather traumatic events with the loss of friends and loved ones to illnesses many here fear. No doubt it's affecting you. Perhaps seeking real life professional help to get to the bottom of your feelings and help you overcome the negative mindset/thoughts would be in order.

Good luck and as always...

Positive thoughts

[AntsyVee]

I can't recommend grief counseling enough to you. It helped save me.

[nivekc251]

Most of those people you read about failed a Neuro exam or had weakness. Yes they had a clean EMG, but there were other signs that made their doctors question their bill of health. Also some I read didn't have an EMG on the affected area. Stop reading stories about ALS and start looking into BFS because that what you have. I'm sorry about all the s**t you've been through and its no wonder you twitch your nervous system is probably in overdrive. Try to calm down and realize twitching is twitching . Trust the numerous doctors ! We need to start a BFS forum or something because we have a lot of twitches here lol.

---------- Post added at 22:54 ---------- Previous post was at 22:52 ----------

I agree with Antsy my mother and father died about a year apart and you don't realize how it affects you until it gets bad. Counseling helps

[Ozcar]

Read My thread and you will get an idea of how bad things are with me in regards to fears with this disease, stop reading into it, if u had a clean EMG it means u don't have it, even if it started in Upper Motor Neurons the physical exam would be abnormal, the tongue would show signs of degeneration, weak throat muscles, swallowing and speaking issues and a positive bebinski sign, your doctors have surely checked those and know that ALS is off the table.

Take it easy and enjoy life, even with someone like me who has much worse symptoms i am trying to relax and enjoy life

[PanickyGuy]

You said you take Xanax. Apparently muscle twitching is one of the side effects Xanax. Did you ask your doctors about the side effects of Xanax and if muscle twitching is one of them?

[mihu]

@PanickGuy , yes I did, and it's confirmed that twitches can be a XANAX cause. I am not taking more than 2 pills of 0.25mg/day now so It's very low. but If I track correctly everything kind of started after 1.5 months of XANAX so I'm 90% confident that it might be a side effect.

I might have an option of SSRI and quit xanax (Zoloft or Paxil) as the doctors prescribed.

@nivekc251 You are also right. One story I read was not the same as mine. The people didn't had EMG or if they did , they made it one limb which was probably non-affected at that time. My doctor who did the EMG he did the study specifically because I requested for "ALS" and he indicated that it has to be done in minimum 3 limbs and not only that it didn't show the fasciculations that I was having but I didn't presented Fibrilations, PSW's or Problems with insertional activity. I had some findings but on the NCS test which revealed the ulnar nerve pinched and a radiculopathy (confirmed by the MRI) which I had before but there's absolutely no suspicion of Lower Motor Neuron problem.

The clinical exam revealed the deep tendon reflexes perfectly by the book ( 2+ ) , triceps reflex absent but no concern and nothing pathologically. The doctors where very very meticulous not because they suspected something but because they wanted to reassure me.

I will try to follow your stories and take your advices.
This forum is the peace of mind for me now.

The reason I fear is my DAD and right now I am a happy daddy of a little girl 11 months old ... So that's my sense of life now and I want to leave at least till she'll be major

All of these tests and doctors calmed me so far, but I still have some birds in the brain.

I am going Tuesday to my PCP and will ask him to refer me to a Psychyatrist and I'll take it from there.

A follow up EMG when I'll make 2 months from the first one I'll take, albeit doctors indicated that's not necessary, but It will be a good piece of puzzle for my mental state .

I'll keep you updated and hopefully my story will become a good point of practice for others with severe anxiety or health anxiety.

Thank you guys for your time! I'm so excited that I found such impressive helpful community!

[Fishmanpa]

One more thing. Stay off the ALS sight! There are people there literally dying of a disease you don't have. They're not there to reassure you!

Positive thoughts