Status
Not open for further replies.

esjcollege08

Member
Joined
Mar 4, 2012
Messages
26
Country
US
State
California
Hello all,

The last 6 months have been very frightening as I try to figure out what's going on with me. I appreciate anyone's input on my symptoms.

First symptoms started about 6 months ago when I noticed trouble breathing during the onset of sleep. I would exhale, and my body felt like it had no reflex to initiate the next breath. A very intense "distress signal" (the best I can describe it) would arouse me from sleep gasping for air. The best way I can describe them is comparable to when you're flying on an airplane and the plane drops suddendly. You get that intense nervous feeling in your chest. My body was starving for air and my brain was sending all kinds of emergency signals to wake me up.

These episodes came and went and I dismissed them up until 2 months ago when symptoms began to get worse.

Started noticing disabling fatigue during the day and muscle weakness in my left leg (the muscles around the knee cap). I barely could leave the couch I was so tired. One day I went for a walk to try and get some exercise and I almost passed out. I went to the hospital and all they preformed was an EKG (heart test) because I told them how tired I was all the time. They suspected heart failure I'm guessing but ruled that out and sent me on my way.

After the hospital, the night episodes became more frequent and intense and my muscles started fasciluating. My right quadricept twitches the most but these twitches would happen all over my body. I know ALS starts in one spot but stick with me. I followed up with my primary care and he agreed that my heart was fine, but wanted me to have an MRI to rule out Multiple Sclerosis. My MRI came back negative for MS and I was sent down to San Diego (where I go to school) to continue my semester. I did not have ANY diagnosis other than I was worrying too much about nothing.

Since being down at school the night episodes have continued as well as the muscle twitching. I wake up every morning and my entire body is trembling. The trembling stops as soon as I get up and walk around but I get various muscle twitches throughout the day. Also noticing that it's been more difficult to breathe during the day. No matter how deep a breath I take, it feels unsatisfying. Also, the emergency signals at night that I described earlier have been accompanied by new signals in my brain. They start above the roof of my mouth and shoot to the front of my head between my eyes. My head slumps over for a second and it feels like my brain is short circuting. This is usually associated with a violent leg jerk or some othe brief body motion that wakes me up. I told my neuro about this and he suspected some kind of seizures, but didn't know what was causing them.

I followed up with 2 neurologists in San Diego to start looking into more neurological disorders. One small practice, (Dr. Aquatania) and UCSD neurological center. I expected UCSD to be much more thorough, but all they said was that my symptoms were psychosomatic, and I needed to see a psychiatrist. Dr Aquatainia was much more thorough, wrote down all my symptoms, and had me set up for a sleep study to see the episodes as they happen. I finally got a call from his receptionist this past friday night saying, "You have been diagnosed with severe sleep apnea." She said she would call me back with treatment details but never did.

Now I know that I do not snore (my girlfriend can verify), so my hunch is that I have Central sleep apnea which is when your brain does not send the signal to initiate breathing. This condition can be caused by ALS. I do not have heart failure (another big cause) or any other of the conditions that can cause this breathing problem (that I know of). Combined with the muscle weakness and twitching, I'm scared to death that ALS is the cause and that it has attacked my breathing first. I was prescribed xanax by my primary care to help me relax but my Neuro advised me to immidiately stop taking it since it can surpress your respiration even more while you sleep. The anxiety is killing me!

I am waiting anxiously until tomorrow so I can call my neuro and set up treatment right away for the central sleep apnea. I'm basically on here just to get your guys input on whether or not you think ALS is the cause. The UCSD doc and everyone else said I had nothing. I'm only 21 which I think is the main reason everyone has been telling me no about ALS. Thankfully Doctor Aquitania discovered that I have central sleep apnea which is a very serious condition. I wonder what would have happened had I never gone to him and just took my others doctors words for it. Anyone with any input at all would be extremely comforting to me as I try to get some sleep tonight.

Thank you all and God Bless.
 

alex scared

Distinguished member
Joined
Aug 16, 2010
Messages
152
Country
UK
State
dorset
Your symptoms sound soo much like mine its spooky. I have breathing issues that go back about a year and a half . I was also diagnosed with complex /central sleep apnea the cause is yet unknown. I twitch constantly 24/7 all around the body but mostly around the legs and knees and like you I had massive fears of all this being the start of some sort of respiratory onset ALS .

Now I want you to listen to this next bit ...
The chances of this being ALS are highly unlikely .. it could be down to metabolic reasons ,bad diet or just plain old stress ( I know how you dont wanna hear that but its true) ... Or lots of other things that are treatable . I know how easy it is to not look any further than ALS when you have this going on but I have had it for 18 months and breathing issues aside I am pretty fine still working as a nightclub bouncer.

If you wanna talk then pm me and I will be there , Good luck and God bless .... alex
 

esjcollege08

Member
Joined
Mar 4, 2012
Messages
26
Country
US
State
California
Thank you for your response. Im curious, what kind of treatments are you on for your central apnea? How have you responded to treatment? Is it something that's reversible or did your doc say you have to stay on treatment for life? I've had the breathing problems for about 6 months now. It's comforting to see that you've had this for 18 months and are still okay. I think if it was ALS attacking my respiration, it would have deteriorated much worse by now. It's still very hard to go to sleep at night knowing you might not wake up.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
esjcollege08,

You might want to wait until you actually get diagnosed with ALS before you get so frantic about it. Until you hear the details of the sleep study, you don't know whether it was an obstructive sleep apnea or a central sleep apnea. You are simply making a bunch of assumptions which may not be true, then putting them into a nightmare scenario.

Did any of the neuros that you've seen do an actual clinical neurological exam on you -- testing strength, tapping reflexes, etc. -- and, if so, what were the results?
 

alex scared

Distinguished member
Joined
Aug 16, 2010
Messages
152
Country
UK
State
dorset
Initially I was put on c pap and given a sleep study where it was noted that my episodes of apnea were not of obstructive nature but of a central one and my oxygen saturation dropped due to auto pilot that controls breathing when i fall asleep failing , I have 6-7 hundred arrousels per night and never get past stage one sleep. I cant lie flat and breathe and my sleep is never restorative and full of dreams . I have de saturated to such an extent that it has sent me into seizure . I still use the cpap as it does slightly help get air in .

I was told that yes central sleep apnea is connected to some neurological conditions but it can also be developed in many other circmstances . I am still being monitored on two monthly appointments at a sleep clinic and when I went through my ALS scare I asked them if this could be the case with me ... The response was something like this "After the amount of time you have been suffering with this you would know about it if it was MND or ALS , It rarely attacks the breathing area first and your young age(33 at the time) also stands in your favor" .

I dont know whats wrong with me and maybe might never find out but so far its a doddle compared to the struggle some of the guys on this forum face on a daily basis .

As for your twitches I really wouldnt worry about them ... Worry when the part thats twitching stops working ... seriously I been twitching for years tongue included , every type of twitch you can imagine ... little ones , big thumpers slow ones and fast continuous ones .

I know that its hard but get ALS outta your mind, at 21 the odds of respiratory onset would be astronomical.

Hang in there:smile: And if you wanna chat for support Pm me
alex
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
OP, you're guessing central sleep apnea, wait until they tell you what kind it is. It explains most of your symptoms--and millions have it that don't have ALs
 

LizT

Very helpful member
Joined
Aug 8, 2010
Messages
1,517
Reason
Lost a loved one
Country
US
State
WI
Im a regular member on here. I do not have ALS, but my fiance does.
Ive been "twitchy" for a very long time now. Spastic too.
I also have those breathing issues that youve described.
I just wanted to throw this out there to show you that you can have these problems and NOT HAVE ALS.
Try not to jump to conclusions. Best of luck
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
Very Good advice from Liz and notme.....they know what their talking about.
 

esjcollege08

Member
Joined
Mar 4, 2012
Messages
26
Country
US
State
California
The neuro did do all the usual strength tests and reflex tests and saw nothing out of the ordinary. That is why he suggested I see a psychiatrist and no further testing was needed. My worry is that I'm having the bulbar onset. But after reading your guys replies, I believe that my symptoms are most likely due to a combination of anxiety and the sleep apnea. I still don't know what's causing the apnea, and I'll keep you posted. I'm guessing the oxygen deprivation is causing the muscle tremors. I forgot to mention before, but ive also been getting really painful hand cramps in my left hand, and muscle pain in my left calf and left glute. I've been measuring my calf every few days and haven't noticied any significant atrophy. Basically before the sleep study, the doctors convinced me that I DID NOT have ALS, but after discovering that I have sever apnea, it raises questions as to what's causing it. From what I've researched so far, I can't see any other explanation, but you guys are right, making assumptions is unnessecary and will only cause more stress.

BTW

It's really nice to be able to talk to people. You guys dont know how much this helps. The internet can fill your head with really awful things but its nice to talk to real people that live with or know someone that has this terrible affliction.
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
You would experience weakness and an inability or difficulty in doing things like walking or climbing stairs before you'd notice any atrophy.
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
Hope all have helped you here. That is what this is for. Now go live you life the best you can and listen to your doctors, no more worrying, it does not change the future. Trust them and fullfil all your dreams.
 

kmendsley

Distinguished member
Joined
Feb 19, 2010
Messages
431
Reason
PALS
Diagnosis
04/2011
Country
US
State
CA
If you have a sleep apnea problem you need to fix that first before worrying yourself about other rare diseases. Follow up with the gp that did the sleep test on you...you need to make an appt to get the results and a plan into place...sounds like you might need O2 support of some kind at night.

Good luck to you.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
My worry is that I'm having the bulbar onset.
You can stop worrying about bulbar ALS. In all that you have written in this thread, you haven't mentioned one bulbar symptom that I can see.

If your girlfriend isn't telling you that you don't kiss her (or some other orally-oriented activity two consenting adults might enjoy with each other, given the proper mood) like you used to, then the motor nerves in your bulbar region are probably fine.
 

CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
208
Reason
Loved one DX
Diagnosis
02/2011
Country
US
State
CA
You have received many words of wisdom here. The more you worry the more you notice the little things. Normal twitching, etc. suddenly seems so much worse. Slow down and take it one day at a time. You are fortunate to have a doc that is listening and testing for all sorts of things. That is great!

Now, you are 21 and in college. You need to relax and enjoy your youth.
Best of luck
Meg
 

CGAR

Distinguished member
Joined
Oct 20, 2011
Messages
119
Reason
PALS
Diagnosis
10/2011
Country
CA
State
ON
Hang in there.
Anxiety will beat the hell out of you.

Try and keep busy to keep your mind wandering back to this darkness.

I really miss the "like" feature when you see a comment like Tr's.
 
Status
Not open for further replies.
Top