Old ALS fear creeping back in.

General Topics

Moderators: JohnV, Arron, garym

Old ALS fear creeping back in.

Postby Arkansan on January 12th, 2014, 3:06 pm

So my twitches have been back for a few weeks now. On top of that the past few days I have had middle and lower back pain at night. I woke up today and my shoulders are sore like if worked out but other than toting a 15lb baby around I have not. I also get weird spots of pain in my hands, wrist, feet and ankles, it feels tight sort of. The pain is deep and weird and I am afraid it is a cramp but I have been told it doesn't sound like one. I have also had some asthma like trouble breathing here lately. Often times my legs get a weird crawly sensation, it doesn't seem to be a twitch but I can't tell. My twitches are mostly in my legs but a good few in arms and hands with the odd scalp.

I also have spots of pain in the top part if my butt. The pain in my legs freaks me out because it makes the limb feel empty but sort right and achy. I quit having this stuff for the most part for the past couple of months, all I had going was my tremor, I am so bummed that it's all back. I have never seen a neuro for all this but my GP and an internist early on were not worried about ALS. I am only 24 and this has been going on for like 18 months, could it be ALS that is just very slow, I have heard it takes some people a year to be diagnosed. I also worry that here lately my twitches are mostly in my legs, any body else have that?
Arkansan
Selfless giver of time
Selfless giver of time
 
Posts: 206
Joined: August 29th, 2012, 6:25 pm

Re: Old ALS fear creeping back in.

Postby veryworried123 on January 12th, 2014, 4:20 pm

I don't think you have anything to worry about and I think every senior member would agree
Given your age the 9 months with no weakness
Read bfs in a nutshell or why you don't have a%^
Btw and don't quoted me but I believe the chances of a^* for you or anyone under 40 in a year is 1-136,000,000

Take a calculator and divide that out

Heck even if it's only half that the chances are still low
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: Old ALS fear creeping back in.

Postby johnnythejet on January 12th, 2014, 8:08 pm

I understand we all have relapses in symptoms and anxiety, as well as new symptoms popping up but that's normal stuff in BFS. Rest assured, this latest bout of symptoms is nothing more than BFS and your anxiety playing with your mind. It certainly isn't ALS, and I would eagerly wager every cent on that fact.
User avatar
johnnythejet
Saint
Saint
 
Posts: 1602
Joined: September 15th, 2005, 2:36 pm
Location: Kansas

Re: Old ALS fear creeping back in.

Postby Xina535 on January 17th, 2014, 9:28 am

Hi - I am a new member on here, but have been dealing with BFS, anxiety and the A** scare for 6.5 months now. (A 'Saint' or 'Senior' member on here my want to read my post and further advise or correct anything).

I can definitely relate with you, about the symptoms coming back and with them the fear. I am in the same situation right now. Example: I found this post because I searched for 'breathing'. I have been almost symptom free for a little over a week (even twitches died down to a normal level). This week, though, I've been having shortness of breath. I don't have problems breathing normally, but notice a shortness of breath when I talk. I feel like I run out of air. On top of that, I've been feeling this throat sensation I had a few times during my BFS life, but that has come and gone away. It is like a sensation of crawling and swelling at the top of the back of my throat.

So this old throat sensation is back, with the shortness of breath symptom (which is new), and I'm freaking out again. I've been looking up respiratory onset A'** and, well, my anxiety is out of control, even though I know the following:

- I have no weakness or atrophy. In A**, these are the hallmark signs.
- Symptoms with A** do not come and go.
- In most A** cases, by the time respiratory issues are present, there are other clinical signs, unless it is the respiratory onset version, which I read is something like only 2% of A** cases (so rare of the rare).
- My chance at 33 to be diagnosed with A** is miniscule, and then to have it and have the respiratory onset version of it is even more miniscule (so yours is even off the charts miniscule).
- I did go jogging out in the cold weather on Monday because I finally felt better overall (after a long time of not being active), and that, along with a case of post nasal drip, is more likely related to my shortness of breath than A**.

It seems this is my cycle:
1) Symptoms are present (either old ones come back or there are new)
2) I google (which is a bad habit but is not needed as much anymore since I know so much over A** already)
3) I freak out, panic even, which in itself is traumatizing, and I take medicine to calm down. In this step, I annoy everyone around me. I also ignore or forget all positive facts that I know (above).
4) I wait and monitor the symptoms - test them, evlauate if it's getting better or worse (this is where I am at right now)
5) Once I feel they are getting better, or are not progressing, I can finally unclench and begin to relax a little (A** does not come and go)
6) Then I look back and realize I freaked out over something totally normal with BFS or whatever the symptom was related to and I apologize to everyone

Maybe you or others can relate with my cycle. I wanted to write this to let you know I feel what you are going through. I also have had the pain in my hands which feel like they are about to cramp, the pain in my legs and butt, and the crawling feeling in leg (different than a twitch), all which comes and goes. When I do have twitches, they are mostly in my legs.

One thing that helped my leg and butt pain: it seemed in my case the leg pain was caused by my butt muscles being too tense (why would I or any of us on here be tense, right? :wink: ), and they grabbed on to nerves affecting my legs. I had a couple nice deep tissue butt massages (just one won't help much), and everything eased up.

I hope you found some sort of help in my post, even if it just made you feel better that I've had exact symptoms.
Xina535
Saint
Saint
 
Posts: 751
Joined: January 2nd, 2014, 9:46 am

Re: Old ALS fear creeping back in.

Postby Yuliasir on January 17th, 2014, 10:50 am

Arkansan,
when it gioes to ALS diagnosis, it may take a year to definitely say yes this person has malignant process in upper and lower motor neurons which progresses within definitel ASL diagnostic criteriastherefore this person is doomed to die in 3-5 next years.

but i suppose you see critical points in the statement: a person MUST HAVE malignant process in upper and lower motor neurons. Which, saying clearly, means that within this year the patient must have been demonstrating increasing and maybe even spreading changes in reflexes(bad clincial exam), definite spastic or weak paralysis (clinical weakness), suspicious signs on EMG, and this process should be confirmed withing the said period as stable and developed with the trend to worsening otherwise for example person might be diagnosed with slow developing PNH, like Raindog, or Isaak or whatever other non-malignant syndrom, or BFS.

As supposedly you do not demonstrate such things for 18 months, one can say it is not what supposed ALS victims demonstrate. weird feelings in your legs are just weird feelings. All your symptomes, including breathing difficulties, are fitting well known anxiety and stress reactions picture so you may suppose it is old friend BFS...
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Old ALS fear creeping back in.

Postby Xina535 on January 17th, 2014, 12:41 pm

Yuliasir wrote:so you may suppose it is old friend BFS...


old friend - not sure about 'friend'. :wink:
BFS is more like a nagging roommate for me, who leaves the apartment to go on vacation sometimes, then comes back and just annoys my world.
Xina535
Saint
Saint
 
Posts: 751
Joined: January 2nd, 2014, 9:46 am

Re: Old ALS fear creeping back in.

Postby Arkansan on January 18th, 2014, 1:01 am

Thanks for the reassurance guys, I appreciate that everyone takes time to answer. With a new baby and an overnight job my stress levels are off the charts.

*Sigh* Now for another question. It rained here heavily recently and the ground has been damp for a few days, though drying slowly but surely. We also have a large, but shrinking puddle left in our back yard from it. I am terrified that the blue green algae I read about in that study will develop in the damp soil or puddle, particularly because that is where my dog goes out and I am afraid she will track it in. She came in smelling kinda funky today and had to be bathed and I am afraid she might have got into something like that. My mother goes out back some and says she sees nothing out there. It has also been in the low 30's at night here, though we had a high of 60 for a day or so, if that would even affect the growth of that kind of stuff.

Like I said I know that this irrational fear of algae is way out there, but it is hard to shake with my stress level so high. Especially considering I am sick with strep throat right now anyway, which only makes the stress worse.
Arkansan
Selfless giver of time
Selfless giver of time
 
Posts: 206
Joined: August 29th, 2012, 6:25 pm

Re: Old ALS fear creeping back in.

Postby Xina535 on January 19th, 2014, 4:34 am

I do not know about any algae issues, sorry. I hope you are able to reduce your fears about it.
Xina535
Saint
Saint
 
Posts: 751
Joined: January 2nd, 2014, 9:46 am

Re: Old ALS fear creeping back in.

Sponsor

Sponsor
 


Return to General Topics

Who is online

Users browsing this forum: No registered users and 5 guests