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zny444

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PALS
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north brunswick
First... God bless all of you! Your forum is filled with very brave, courageous people.

I am a 29/yo male that has not been diagnosed with als but I am experiencing very weird symptoms over the last month or so.
Brief background... diagnosed with stenosis of the lumbar back in Jan/Feb, had severe shooting pains in legs and mid back hurt real bad. Went to pain management specialist who gave me two steroid injections lumbar and right facet joint. While resting at home and my leg on my coffee table I felt and saw my right calf twitching. At first I thought nothing of it, as I was on a bunch of meds and just had the injections. I went through 4weeks of PT and the back got better. Fast forward to a month ago... noticed shooting pains on right side again and calf twitching like crazy! I did the Dr. Google search and found myself freaking over what it could be, so I made an appt with a local neuro who examined me and told me my reflexes are a bit brisk and that's because I;m young and I shouldn't worry about twitching as they could be benign. We'll that wasn't a good enough diagnosis for me so I mentioned the EMG. She said that she would refer me to a neuromuscular specialist at Umdmj if I wanted and of course I accepted. When I called to make the appt the Dr was out of the country for a month! So I began searching and stumbled upon the University of Penn Hospital. They were able to squeeze me in to see a specialist. The day came and he did an extensive exam and even called his colleague in and they both said I didn't have the disease and that they both felt I did not even need an EMG. I took there advise and tried to get on with my life... but the twitching remained. So, I decided to go for the appt with the Dr at umdmj, the day came and another extensive exam but no EMG. He didn't even mention it to me he told me that they are benign (BFS) and that there was nothing to worry about. He is a knows specialist in his field with over 24 years of experience. I decided that was the last neuro type Dr I would go to, but now I'm having second thoughts.

Two weeks after my last appt, I feel as if I'm having a hard time getting a good breath. Its not like I can't breath just a feeling like I'm not getting enough oxygen... kinda weird. I'm also am still expericing twitching of the right calf and now the left with some all around my body. I also have been having pretty bad night sweats/numbness in last two fingers and forearms as well as continuous abdominal noises with some constipation/diahrea. Almost forgot to mention that I have a weird vibration in my lower jaw and sometimes in my arms. I'm real scared that I may have this disease! All the Dr's told that I suffer from stress/anxiety and to see a psyc (which I did) and she diagnosed me as being manic/depressed and put me on a cocktail of anti pysco drugs. That just made me sleepy/ foggy and even more vibraty!

I keep telling these Doctors that all of the anxiety/panic attacks were brought on by the twitching! They don't seem to believe me... I'm at a lost here guys. I don't know what to do anymore! I keep telling myself that I'll be ok and that the symptoms have to be related to my back problems... but I keep going back to the A*S stuff. So scared, please help.
 

hope

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Oct 1, 2005
Messages
230
Hello,

I am sorry you are having all these uncomfortable symptoms. I understand how scared you must feel. It is scarey to not know what is wrong. This is just a thought, I wonder if you are hyperventilating, this can give you symptoms like the one's you are describing. Anxiety is a horrible thing to have also. It can make you feel horrible. Ask your doctor is if what I suggested could be the problem. I hope you will feel better soon and hopefully you will not have als.

sandy.
 

marlo

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Joined
Feb 20, 2006
Messages
92
Hello ZNY 444,

So very sorry to hear about your troubles. Your too young to be going through so much stuff. It's hard enough when your my age but your just getting started with your life. I am a bit surprised that none of the doctors did an EMG. It's not a fun test so your kinda lucky,, but they must be pretty sure you don't have ALS,, for none of them to suggest doing it. And they are right ,, not all twitching is caused from ALS. If you have been having real bad back trouble,, part of it could be due to nerves being pinched. All so some of your med's could cause some of the side effects. Try to keep your mind busy and off the twitches to see if it gets better. Sometimes our mind can play tricks on us.
We may not have any answers for you ,, but we are always here if you just need to talk.
Best of Luck to you
Marlo
 

Leslie

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May 12, 2006
Messages
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GA
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Atlanta
So far from the reading I have done and my father's experience, most ALS patients do not experience the physical pain that you are describing- some do, but the for the majority it may be transient.

There are MANY causes for muscle fasiculations.

I suggest that if you are feeling that your symptoms are ALS in nature that you consult a doctor who specializes in ALS. You may need to consult a University or Medical College for a referral, or the ALSA organization may be able to guide you for someone in your area.

You need to get in the care of a physician who will follow your symptoms and make a diagnosis- and give you answers.
 

Al

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Joined
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Hi there zny444. I'm no dctor but your symptoms don't sound like ALS to me. First of all you are only 29 while some people have been diagnosed at that age I would guess that it would be a big stretch of the odds for it to be this given your age and symptoms. Given the fact that the neuro's haven't given you an EMG or nerve conduction study I'd think that you aren't showing enough symptoms to warrant a diagnosis of ALS. You haven't said on your profile where you live. In the US if you have health insurance you get any test you want. In some other countries such as Canada the docs are less inclined to order tests that they feel are unnecesary. Where are you from? This could have a bearing on your diagnosis. Try not to get anymore stressed. It might not be as bad as you think.
 

zny444

Member
Joined
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Messages
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PALS
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nj
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north brunswick
Thanks guys for your replies...

I live in the USA in New Jersey and I have gone to two Universtity Hospitals, (Umdmj in New Brunswick, NJ and Univeristy of Penn Hospital in PA). Both are known for there help with neuromuscualar/move disorders and actually the Dr. that examined me at Umdmj is a ALS specialist. Both Docs ruled it out after there examination. You would have thought that the world would have been lifted off my shoulders after I saw that 4th Doctor at Umdmj but to be honest I feel as if I might have been overlooked because I was so nervous when I was being examined. I also wonder why they didn't do an EMG, it at least would have put my mind at rest if it came back negative. Sorry if I'm begining to ramble... I'm just still experienceing all of these weird things and it seems the medical community really doesn't know what I have so they blame it on stress/anxiety.

Al? I remember reading a post that your twitching started in your right calf, just like mine. How long after that did you start having them in other places? For me, I started to notice little twitches in my forearm and biceps about a week or so after I noticed them in my calf. Now, 4 months since I first noticed the calf there just about everywhere but still mostly in both calfs. I really notice them after I walk around for a bit and then sit at my desk... then the calfs go crazy! For the most part though, the rest are few and far between throughout the day. One other question... (if you don't mind) I have been waking up lately at night with both forearms and just the two last fingers on my hands with a tingly, pins and needle feeling. They seem to go away but it takes a bit longer then your usual muscle falling asleep stuff. Do you or other PALS experince things like this? My left foot went numb also right now... Thanks for your ear's!
 

Al

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I know I'm going to hate myself for this but there is no point in ignoring your questions. After I noticed the fasc's in my calf it was about 8 or 9 months before they were going just about everywhere below my neck. I did get the tingly fingers but I was getting that about a year or so before the fasciculations. I thought at the time I was just sleeping on them and cutting off circulation. I would also get bad cramps in my fingers while holding a newspaper or book. With all the doctors you have seen I would think it unlikely that they all could be wrong about your diagnosis. Is it possible that you are reading too much into your symptoms? As I said earlier it is unlikely that at your age you would get ALS but it has happened. Try to sit it out for a few months and see if your symptoms get any worse or they might just go away. Are you under a lot of stress? That could be one of the causes of your symptoms. Worrying about ALS can play tricks with your mind. It can make things seem a lot worse than it really is.
 

Granny

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May 18, 2005
Messages
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Someone gave some good advice on this forum a little while ago to a person who was very scared that they might have ALS and had read everything they could find on the internet. The advice was - don't go looking on the internet! zny444, that might be good advice for you also.
Try, like Al said, to not worry so much, and things might quiet down.
My ALS is in my hands, but I have no noticable fasciculations, just weakness, so there you go. Everyone is so different, and I am sure there are other diseases that could be causing what you have.
Sorry that you are going through this.
Leah
 

spud01

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Joined
Apr 4, 2006
Messages
37
Reason
PALS
Country
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Maryland
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Millersville
Dear zny444,

Try not to stress yourself out. There are alot of reasons for fasiculations, anxiety makes them worst, so if you are anxious about them, you will feel everyone of them. With being evaluated by all those specialists, learn to trust your doctors. Don't let your mind play games on you. If you don't meet the criteria for an EMG, the doctors won't do it, especially for insurance purposes. They usually say if you have muscle fasiculations, without any weakness or atrophy, it is not ALS.

Try not to let your mind worry you, trust your doctors. I could see if you only saw one, but you saw 3 of them. The odds are they know what they are doing.
The worry will take control over your life, to where you won't be living you will only be worrying.


Try to relax, sincerely,

spud 01 (Terri)
 

zny444

Member
Joined
May 15, 2006
Messages
14
Reason
PALS
Country
US
State
nj
City
north brunswick
Thanks again guys for all your replies... I will try and take it easy and not let my mind freak me out! It's just hard to say these things are benign when they are still happening. Thanks again guys!
 

hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
You are welcome. Please try to keep calm and wait for a bit and see like the others have said if the symptoms get worse. I know this is very hard to do when you are afraid. Fear alone can cause many many symptoms and they can be very unpleasant. Maybe you could sit down for a bit and think about things that may be bothering you. Sometimes when we do some searching we can come up with answers. Try to go back to when your symtoms started and see if there was something bothering you at that time. I am not saying this is all anxiety I am just saying that maybe there is a reason for the symptoms that you have. Take care and hope you feel better soon.

Sandy.
 
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