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mihu
22-09-17, 01:24
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. :weep:

Fishmanpa
22-09-17, 01:26
Please read this... (http://www.nomorepanic.co.uk/showthread.php?t=196071)

Positive thoughts

mihu
22-09-17, 01:45
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
22-09-17, 02:13
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
22-09-17, 02:25
I can't recommend grief counseling enough to you. It helped save me.

nivekc251
22-09-17, 04:54
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 :yesyes:

Ozcar
22-09-17, 05:02
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
22-09-17, 05:05
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
22-09-17, 05:31
@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 :D

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
22-09-17, 20:47
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

mihu
24-09-17, 01:26
I was there already and people reassured me. Bad choice I know. Bad choice that I've read so much. And now each times I get a twitch or a spasm it is killing my mood. And makes me think the worst.

The single relief at this point is the EMG which was clean. But I'll ask for another one at 3 months after, even if doctors were not concerned but for my peace of mind.

AntsyVee
24-09-17, 07:17
Please don't go on the forums again. Listen to FMP. You've made people with a horrible disease, reassure you, a healthy person that you don't have it. It's messed up.

What are you doing for your anxiety besides getting medical tests?

mihu
24-09-17, 19:59
I have spoken with my neuro last time and he prscribed zoloft 50 mg / day. Problem here is that I am an occasional drinker and I have to stop it completely. Doctor prescribed me but he mentioned that It should be my choice as he doesn't see an advanced grade of Anxiety.

My problem here with BFS or whatever I have is time. I found the bfs facebook support group where I see people dealing with kind of the same condition.

Me and my wife were planning for another baby but the worry that I can develop my dad's disease combined with twitching made me stop every plan.

I am now just working , coming back home, no social activity and everything goes with me as auto-pilot...

Time will pass and maybe after 6 months of twitching if no weakness is developed I should probably come back to normal.

CleverLittleViper
24-09-17, 23:34
You've been through a hell of a lot recently, and it's absolutely no wonder you're dealing with this now. I, like others, will advise you to seek help and support for your grief.

Twitching is caused by many things-too much caffeine, medication, anxiety, stress etc. ALS does not present first and foremost with twitching. You've had a clear EMG. You're fine in that department.

OK, it is entirely possible that you can get a clean EMG and sometime in the near or distant future still be diagnosed with something, but is it probable? And can you live your life like that? Forever wondering what if? My answer would be is that no, you can't. That's not living.

If you search hard enough, you'll always find oddball cases which don't reflect the norm. ALS is incredibly rare-so rare it's a wonder anyone even knows about it enough to worry about it-and it is even rarer to be one of the oddball cases.

I suspect that this anxiety is a result of the grief that you've suffered-and I'm sorry for your loss, but please seek support for that, and put your mind to rest about all of this.

paranoid-viking
24-09-17, 23:40
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

Same to be said about the cancer boards which is sworming over with hypocondriacs thinking that the cancer victims and their families are there to reassure them. Some of them are even denying they are hypocondriacs. Shameful it is!

CleverLittleViper
24-09-17, 23:45
I was there already and people reassured me. Bad choice I know. Bad choice that I've read so much. And now each times I get a twitch or a spasm it is killing my mood. And makes me think the worst.

The single relief at this point is the EMG which was clean. But I'll ask for another one at 3 months after, even if doctors were not concerned but for my peace of mind.

I do not mean this to be nasty-but this is more than a bad choice. This is disrespectful to those that are suffering. You have been given a clean bill of health-something these people would love to have-and you've allowed them to reassure you.

They do not need people, hyped up with HA, invading their forums with their worries. It's not helpful to you and it's not helpful to them.

Of course it is killing your mood. Because you've drawn a conclusion without examining all of evidence. Not only that, but you're ignoring the evidence to the contrary of your fears!

I don't think getting another EMG in three months will give you peace of mind at all. There are countless people spread across forums like this one, that have the same mentality. "Just another test to really put my mind at rest." It's almost like they think that this next test, unlike all the others they've subjected themselves to, will be the "elusive one." It will be the "Holy Grail" of tests, and once the results come back from that, finally, will they listen and be able to move on and accept.

More often than not, the test reassures briefly. The fears quickly re-emerge, and a new search for the "Holy Grail" begins. It's not normal to regularly get EMGs without cause. What makes you think that that EMG will grant you peace of mind where this one did not?

mihu
25-09-17, 08:03
Well... a part of BFS is the non progression of the symptoms and given I have only 2 months of twitching some people which gets 6 months old and they have no weakness It is safe. I am much more relieved now after seing neuros and tests, I am trying to focus while at work and hopefully I'll get the peace of mind.


And yes you are right, I cannot live in a constant fear. I am not visiting any more als/mnd forums right now and I was quite happy with my progress of staying away.

I am looking forward and thank god that I found this forum cause I feel that I belong more here...at least from now.

The problems even with my clean EMG is that my DAD is in the equation and I hope I'll not develop the same...at least now :) Just want to see my daugther growing to at least being major...

I will do some research in getting help with my anxiety and even if I'll need to use medicine I will do an effort.

Josh1234
26-09-17, 03:13
Your dad isn't "in the equation." You don't have familial ALS. Your chance of developing it is the same as the rest of the general population.

nivekc251
26-09-17, 05:15
You need to get out and do stuff. Staying busy helps get your mind off of twitching. You got the clear from the specialists, Now go do something that you enjoy.

mihu
26-09-17, 16:32
Yep @nivekc251, totally right. It's just that 2/3 reports on the internet which I saw people started initially with twitches still keeps me down. Given I have only 2 months and 1 week of them, making 6 months will be reassuring as if no weakness or other symptoms will develop it should be ok, I still pray and hope ... Then I will be reassured that I don't have MND, at least for this decade.

melfish
26-09-17, 17:07
I find it strange that you've set this arbitrary time frame for your anxiety, when you have been given the greatest peace of mind possible: a clean clinical and a clean EMG. I'd kill for that.

mihu
27-09-17, 19:10
I also had the CPK blood test and it's withing the normal range.

40 - 196 , and my value it's 88 ( that means I have no biomarkers for muscle wasting ).

I have 2 months and about ~ 1 week now. However, I have days when I have super spasms, and this reminds me of my DAD and how it started...

However, my mom told me. In his case it was different, when he started to twitch and got to the doctor, the neuro already noted "** Suspicion".

In my case is different but I read a lot of reports about people who had clean EMG's and in 6-8 months it started to show up with other symptoms.

I hope this is not my case. I know I have to stay out of the internet. Monday I'll begin Zoloft treatment and stop drinking for a while. I hope this will help...

mihu
30-09-17, 06:27
No since 2 days I started to feel my left hand a bit weaker than right. I am not sure if it's the classic "failure" in ALS. Not sure if it's just perceived.

Today at the gym I tried to do curls and with the left hand I can do 17 @ 30 lbs and with the right hand I can do 20. Problem is that left arm gets fatigued, and I had tremors after.

My face in the right side seems atrophied. I started on SSRI but It takes 3 weeks to install in..

However, I know I cannot have fear for the things I cannot control. But at this point I would love to know If I have ALS so I can do a life insurance prior to diagnosis for my baby, sell the house and do whatever I can do for the time as I still can, and then opt in for assisted suicide once the doctors will recommend going on a vent.

I hate this condition, whatever is...

Becazican
30-09-17, 15:20
You have everything all planned out except what if your wrong. Which i think you are? You are wasting precious time , if you were having muscle wasting your ce would either be high normal or high, it wasnít. You have a clean emg . This is all just to remind you that you are healthy.

mihu
30-09-17, 17:27
Mey god hear you !!

tryingtosurvive1
24-11-17, 01:05
If you have genetic ALS it wouldn't just be your dad. You'd have something like a grandparent or an aunt or a cousin, etc, etc. Multiple people. These are "autosomal dominant" conditions. I have a milder one and it's me, my sister, my mom, my late grandfather, probably my mom's cousin, etc. Educate yourself about genetics and that will reassure you if you still need it.

I'm sorry your dad died. I hope you can grieve him and move past this fear.

---------- Post added at 16:05 ---------- Previous post was at 16:03 ----------

melfish, I think ready access to NCVs/EMGs is not an unalloyed good for twitchers. Occasionally people will fixate on some mild abnormality the test picks up and that extends their obsession.

melfish
24-11-17, 02:47
I agree. I don't think doctors should be handing out EMGs like candy

atl
24-11-17, 03:57
I agree. I don't think doctors should be handing out EMGs like candy


No, definitely not, some of us would be in there on a weekly basis.

melfish
24-11-17, 04:01
It's not just that. It's that EMG aren't just for ALS diagnosis. They will likely find something wrong, and HAers won't be able to let it go. Then what?

atl
24-11-17, 05:05
Something for those of us who have been dealing with this for months: it’s highlight unlikely the the disease wouldn’t have progressed over those months (I’m at 3) in a way that is quite noticeable. You’d know it by now.

Of course reasoning with this thing doesn’t really ever work.

melfish
24-11-17, 05:07
I'm at over six months :/

atl
24-11-17, 05:26
Yeah, you’d see significant progression in 6 months. No way do you have it

melfish
24-11-17, 07:09
Maybe, but on the other hand, I think maybe I've just been noticing the precursor signs - signs that normies would ignore - and I'm about to truly be hit with it ...

atl
24-11-17, 20:28
Maybe, but on the other hand, I think maybe I've just been noticing the precursor signs - signs that normies would ignore - and I'm about to truly be hit with it ...

Typical OCD thought pattern...always finds the "what if..." possibility no matter how incredibly unlikely it is.

melfish
24-11-17, 21:25
Typical OCD thought pattern...always finds the "what if..." possibility no matter how incredibly unlikely it is.

Yes, of course I'm the snowflake with the rare presentation of the rare onset of the already rare disease :shrug:

MaryAT
25-11-17, 03:15
Do any of you have the CONSTANT twitching though? I've had generalized twitching all over my body forever. I don't really worry about that. But the spot I have now in my thumb is every 10 seconds around the clock, going on week four. I never get a break from it. Even if I wasn't terrified by it (which I definitely am), it's just driving me crazy. I can't get away from it. Sometimes I have this irrational impulse just to stab something into my hand to try to make it stop, even for a minute. There's no way this could be "normal". I just can't stand it anymore :(

Josh1234
25-11-17, 08:45
Maybe, but on the other hand, I think maybe I've just been noticing the precursor signs - signs that normies would ignore - and I'm about to truly be hit with it ...

God, you're obnoxious. Far too smart and lucid to be acting like this.

AntsyVee
25-11-17, 20:53
God, you're obnoxious. Far too smart and lucid to be acting like this.
:doh:

Yeah, I agree. I think itís why we all want to see you get better, Mel.

emmegee
25-11-17, 21:09
Maybe, but on the other hand, I think maybe I've just been noticing the precursor signs - signs that normies would ignore - and I'm about to truly be hit with it ...

Ahh, this was me last year in the height of my ALS Health anxiety... I was googling "precursor" or "hindsight" symptoms people who had ALS had experienced early on before being diagnosed. It is almost like we are trying so hard to convince ourselves we have it! I eventually got through it and now look back with my logical mind and know it was all just anxiety and fear of a terrible disease. You will get through this. It just takes time.

melfish
25-11-17, 21:59
Ahh, this was me last year in the height of my ALS Health anxiety... I was googling "precursor" or "hindsight" symptoms people who had ALS had experienced early on before being diagnosed. It is almost like we are trying so hard to convince ourselves we have it! I eventually got through it and now look back with my logical mind and know it was all just anxiety and fear of a terrible disease. You will get through this. It just takes time.

Yeah, I'm OK for a few days but then it creeps back in. Sometimes it seems absurd to me, then I'm back in the doubt cycle. There's no rhyme or reason. What i can rationalise and diminish one day, seems like strong evidence the next. It's like I've lost all perspective and/or objectivity.

emmegee
25-11-17, 23:07
Yeah, I'm OK for a few days but then it creeps back in. Sometimes it seems absurd to me, then I'm back in the doubt cycle. There's no rhyme or reason. What i can rationalise and diminish one day, seems like strong evidence the next. It's like I've lost all perspective and/or objectivity.Yes it works the same for me. I have a couple good days and then a setback when I am paralyzed with fear again. It's discouraging but it will get better.

Sent from my SM-G920V using Tapatalk

atl
26-11-17, 05:19
Yeah, I'm OK for a few days but then it creeps back in. Sometimes it seems absurd to me, then I'm back in the doubt cycle. There's no rhyme or reason. What i can rationalise and diminish one day, seems like strong evidence the next. It's like I've lost all perspective and/or objectivity.

Bingo. This is exactly my cycle to a T. Right now I am pretty good. But in a few days....

AntsyVee
26-11-17, 07:59
It will always come back around until you decide to treat it. All it takes is some stress to trigger it...

melfish
26-11-17, 18:59
It will always come back around until you decide to treat it. All it takes is some stress to trigger it...

I've noticed that, how when any kind of stressor presents itself, my mind ramps up the HA. It's as though it funnels all the anxiety into my disease fear, where it's manageable, contained (?)

AntsyVee
26-11-17, 21:43
I've noticed that, how when any kind of stressor presents itself, my mind ramps up the HA. It's as though it funnels all the anxiety into my disease fear, where it's manageable, contained (?)

Yup, thatís normal for a person with OCD. My buddy has harm OCD, and when she gets stressed out, she starts worrying about if she hurt someone in some way and she forgot about it.

I have GAD and PTSD. When I get stressed, I start worrying about everything, like work stuff, house stuff, did I send en email, etc. sometimes the PTSD takes over a bit and I worry about safety of my family.

This is how anxious brains work.

But the meds Iím on prevent me from getting lost up in the spiral. And the host of other techniques I learned in therapy help a lot as well.

MoleHill
26-11-17, 23:17
It is so nice to hear others explain their thought processes and to know immnot alone.

mihu
16-02-18, 20:40
Back here guys.
So, rewinding a bit into the past. This summer , 7 months ago I started to develop twitching. Simmertically and permanently calves are the ones where is persisting and I also have mild cramps.

Sometime twiches were hard and sometimes I barely feel them.
They happen in the other parts of the body as well, but not frequent, they come and go.

Did spine MRI and found a L5 S1 mild radiculopaty and the nerve conduction study + EMG found absolutely no spontaneuos activity in the muscles, nor the medical exam found absolutely no evidence of ALS/MND.

7 months and I haven't developed something sinister ( Weakness or atrophy ) and I am planning to do another EMG to follow up.

I was in a worst depression and anxiety period till my PCP and me agreed that I should start and take PAXIL 20mg / day which in 2 weeks ( combined with xanax ) It really really helped.

Neurologist told me that Zoloft MG / day might work.

At this point each time I get a twitch my **S Fears comes back, seems that PAXIL doesn't really work or my body started to tolerate it.

Dunno what to do because I'm not happy about it. Should I start on Zoloft or I should ask my PCP If I should increase the PAXIL Dose?

What are your experiences so far? I never went off paxil till now, had some days when I forgot to take it but now I'm in a limbo I guess.

Fishmanpa
16-02-18, 20:50
I can tell you that Zoloft really helped me in conjunction with one on one therapy when I was dealing with some depression after my first heart attack. It helped my mind quiet down and enabled me to focus on the techniques that help me pull out of the funk I was in.

Talk to your doctor. It's certainly worth a try IMO.

Positive thoughts

AntsyVee
17-02-18, 06:38
I can tell you that Zoloft really helped me in conjunction with one on one therapy when I was dealing with some depression after my first heart attack. It helped my mind quiet down and enabled me to focus on the techniques that help me pull out of the funk I was in.

Talk to your doctor. It's certainly worth a try IMO.

Positive thoughts

Agreed 100%:okay: