Status
Not open for further replies.

Hyppo

Member
Joined
Sep 28, 2008
Messages
24
Reason
Learn about ALS
Country
SWE
State
Stockholm
City
Stockholm
Ok, first off I'm really sorry to be bothering all of you very brave and admirable people who keep this site going and who are going through the very toughest trials life has to offer. If you feel I'm just another annoying worryer then please just ignore me. Also sorry for the long post.

However.

For the past four months I have had this lactic acid, tired feeling in my right leg. The leg feels weak and sometimes I get the feeling my balance is off. I have not really had any problems with exercising (biking, golfing etc) or doing any everyday task, but the weak feeling is there most of the time. Usually the lactic acid feeling is in the hip area or around the knee. I've tried to test my strength, but it's hard to come up with a method.
• I'm starting to have the same weak feeling in my upper right arm and shoulder.
•The last few weeks I have also had lots of twitches – one or two at a time in seemingly random places, most of the time in the legs. though.
• Overall my body feels achy and I sometimes get a burning back pain when I sit down.
• For about three weeks I had severe constant tingling and burning sensations in my thighs and hips. It was strange – like tinfoil under my skin. It's gone now.
• On top of this I've had some crampy or burning chest pains at night. Not very painful, but still kind of scary. If they were on the left side I would maybe think cardiac, but they are on the right side.

I've had some basic bloodwork done and a lumbar/pelvic MRI and X-ray. Everything came back normal. No testing in the neurological field, though. For the record I'm a 32 year old male. Medical facts: Scoliosis (for at least 15 years) and lots of diabetes in family.

The weakness and twitches make me fear als. Since I am worrier who has done his internet research real well I constantly end up at als sites. In fact, one of the reasons I'm posting here is that I have trouble coming up with alternative diagnoses. Weakness + twitches = als, seems to be the conclusion. Am I wrong? Does this look like als to you?
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
The symptoms that you describe are not typically associated with ALS, especially if they come and go, as you mentioned the tingling and burning sensations you felt.

It sounds as if your symptoms are global, which is not something ALS typically does initially . . . unless you were completely unaware of your body and didn't notice anything up until this point. ALS typically presents itself focally and then moves to a more global presentation.

What you are describing sounds like a neuropathy to me . . . and if you have a history of diabetes in your family . . . a diabetic neuropathy. The symptoms you describe could also be attributed to lowered B12 levels. The fact you have scoliosis could also cause all kinds of peripheral nerves to be pinched (this would not have been caught by doing an MRI of the spine). I could go on and on and on and speculate until I get carpal tunnel.

What you should do is go to a neuro and get evaluated. Please don't try to self-diagnose yourself. Twitching and weakness are symptoms of ALS, but they are also symptoms of a ton of other conditions. Unfortunately the internet always seems to lead people to ALS. I'm not sure why.

Take home message: I wouldn't be worrying about ALS at the moment.
 

Hyppo

Member
Joined
Sep 28, 2008
Messages
24
Reason
Learn about ALS
Country
SWE
State
Stockholm
City
Stockholm
Thanks a lot for the reply. I have tested blood sugar and it's good so it's not diabetes. Also, the symptoms are sort of global, but all of them appear on the right side of my body, and the leg is by far the most pronounced condition. I'm going to see my GP the day after tomorrow and I will try to get him to refer me to a neurologist.

I was wondering about the lactic acid feeling I have. Would you say that weakness in als is generally something you can feel, or is it something you discover when you try to do something?
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Hyppo ... In my own experience, I "discover" weakness when I can't do something (like turn a key) that I've been able to do in the past. I don't have any sensations of weakness ... am not sure what they would feel like.

It seems like everybody's experience is slightly different, but that's how it happens with me.

Good luck!
BethU
 

Hyppo

Member
Joined
Sep 28, 2008
Messages
24
Reason
Learn about ALS
Country
SWE
State
Stockholm
City
Stockholm
Thanks, BethU, for taking the time. You are all true heroes here.

I try not to self diagnose, but it's hard. Four months ago I was feeling healthy as a nut. Then this weak feeling hit, and then the back pain and the arm and the burning sensations and the twitches and the chest pains. I don't know what to believe.

Doctors always have that "wait and see" attitude, but I'm having trouble living my life in between check ups. And every time I get a test result back I feel a little relieved that they didn't find anything life threatening, but also increasingly frustrated that they don't find anything at all.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
The waiting is definitely the hardest part of any neurological diagnosis! I hope you get some answers soon.
 

Hyppo

Member
Joined
Sep 28, 2008
Messages
24
Reason
Learn about ALS
Country
SWE
State
Stockholm
City
Stockholm
Went to see my doctor yesterday and he referred me to a neurologist – reluctantly, since none of my symptoms were at all obvious. I was able to push and pull and do everything he asked me to. Reflexes were all normal. He's seen me worried before and he leans towards my symptoms being anxiety related. We'll see – I'll have to wait about nine weeks to see the neuro and my symptoms may or may not have increased by then.

One thing I didn't tell him (and didn't say in the post above) is my jaw gets really tired from speaking. It's been like that for almost a week and I've sort of attributed it to my being tense or stressed out. But last night it got so bad that I almost had to bail on my friend when we were out having dinner. The conversation and the eating was so exhausting that I thought my jaw would start cramping. After a few more glasses of wine however I relaxed and the speaking flowed more naturally. The jaw feels fine after sleeping, but gets worse during the day. I find myself trying to speak as little as possible and for a couple days now I tend to choose food that's easy to chew. I guess I'll give it a few more days before I add it to my list of possible neurological symptoms.

The reason I didn't tell my doc is that the more symptoms you add to the laundry list the more the doctors seem to lean towards anxiety.

Thanks for the replys folks.
 

Hyppo

Member
Joined
Sep 28, 2008
Messages
24
Reason
Learn about ALS
Country
SWE
State
Stockholm
City
Stockholm
Updated symptom laundry list:

– Increasingly weak right leg accompanied by a lactic acid feeling, like I've been working out really hard. After exercise I often get a burning low back pain. (4 months)
Twitches. Mostly in the legs, but they occur all over. Sometimes they go on repeat, but mostly they come one or two at a time. (1 month)
Burning sensations and chills in both thighs and hips as soon as I stopped moving. (Had them for a month, but they quit about three weeks ago)
– Jaw fatigue and a thick feeling in the back of my throat, making difficult speak and eat. No one has noticed anything yet, but I find myself articulating a lot for the words to come out right. I also avoid speaking as much as possible (2 weeks)
Awkward chest pains on the right side. Sometimes they feel like cramps between my ribs. Sometimes it's more like a burning persistent ache making my lung feel strained. Also gets worse with exercise (2 months)
Slight weakness in my right upper arm and shoulder. (4 months)
Slight weakness in my left forearm and wrist. The wrist (2 weeks)

I don't really know why I'm posting this, but I guess like many others in this part of the forum I'm just feeling scared right now and I find it hard to fucus on other things.

Ideally someone would say that no way tis this ALS, but I know you can't really do that, or help me on the diagnosis part at all. I've googled every corner of the internet trying to find reassurance, but I only ended up more scared.

It's been four months since my leg started and everyone just tells me not to worry, because none of these symptoms are visible to anyone else they tend to think I'm exaggerating or just imagining things.
I'll admit I've given them some reason to. I've been very worried these past months and reached anxiey levels I didn't think were possible before. At one point I was in benzo hell – popping pills like crazy, only to launch into a state of pure panic when the meds exited my system.
I got out of that and pulled myself together somewhat but I'm due in far too many weeks at the neuro.

I know lots of you people have gone through long hard peroids of waiting. Do any of you guys have any good tip on how to just put your fears aside for a while and go on with your life?
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
the only tip that I have is what works for me, and I still have bad days. You have to give in a little to it. YOu have to accept what is happening, and go with it. I am thankful that I am not worse and can still do things. Also, time-you just get sick of worrying and talking about it. You will get sick of NO answers and realize all you can do is wait and see what happens. YOU have to choose how you will handle it and fear wont help.
I decided after a few months of pity, that I cant let anyone or 'anything' change my personality. I still have a good cry at night when I am alone, but during the day I am good. Kinda like that old saying 'fake it untill you make it'.

and I think there are worse things that could happen, dying in a car accident and never seeing or saying good bye to your loved ones. fast moving cancer that takes you in 6 months. alzheimers (my grandfather died from it) where you are not mentally there anymore.

I dont have diagnosed and I am scared, infact more than scared with 3 young kids that need me. I dont want this, but if this is what I have, what I can do about? Just live my life and be a better mom, wife, daughter, sister, and friend. and enjoy every minute that I have. life is not fair, and we are all going to die.

take care and try to relax, just have fun...
 

lostinlouisville

Distinguished member
Joined
May 10, 2008
Messages
242
Reason
Other
Country
US
State
ky.
City
louisville
Hyppo

My Grandmother always use to tell me 90% of the things you worry about never happen,{that's a lot of worry for nothing}. The 10% that does happen you usually can not change, so that to is time wasted. I am not saying the way you feel should not concern you, I also am concerned about my symptoms, but please try not to let it consume you. You find you are happier and the people who have to live around you are happier and when they find out what you have people will talk about what a rock you have been. I think your going to find whatever it is will be treatable, most things are, and you can not change one thing that's not worrying about it. Just take a deep breath, decide you are going to get through this and live your life in between Dr. appointments. You can do it, I was a cheerleader growing up and I am cheering for you.
 

Hyppo

Member
Joined
Sep 28, 2008
Messages
24
Reason
Learn about ALS
Country
SWE
State
Stockholm
City
Stockholm
Hmmm ... thanks. I know you've been in the waiting game for a long time. I'm just starting out though and I'm not really ready to go into the dying discussion. Somehow I have to assume that this isn't ALS, because in all fairness, since I'm only 32 and all there is still a fairly substatial chance that this is something else. Somehow my strategy has to build on that.
 

Hyppo

Member
Joined
Sep 28, 2008
Messages
24
Reason
Learn about ALS
Country
SWE
State
Stockholm
City
Stockholm
Thanks lostinlouisville.
 

lostinlouisville

Distinguished member
Joined
May 10, 2008
Messages
242
Reason
Other
Country
US
State
ky.
City
louisville
Hyppo

I don't think anyone wanted you to start thinking of dying, I think my post was quit the opposite and even Write said he doesn't think it sounds like ALS. I really am glad you are not thinking of dying because I believe that would be a waste of time.
 

Hyppo

Member
Joined
Sep 28, 2008
Messages
24
Reason
Learn about ALS
Country
SWE
State
Stockholm
City
Stockholm
No, I was referring to the post just before yours. It was good, but just not really something I can take in right now.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Hyppo ...

If this counts for anything (and it doesn't, as I know nothing about medicine), but it still doesn't sound like ALS to me ... especially the burning and tingling. When you say you have "weakness," does this mean you are unable to perform tasks that you couldn't before? That is the only kind of weakness I have experienced. I'm not into body-building, so I don't know what lactic acid weakness feels like, but with ALS, my only awareness of weakness comes when I discover that I can't turn the ignition key, can't pop a pop-top can, etc.

As far as waiting: It took a little over two years for me to get a correct diagnosis (I had four bad calls in that time: first stroke, then Progressive Supranuclear Palsy, then recurrent larengeal nerve damage, then Myasthenia Gravis, and finally ALS.) Although almost every neuro I saw (and I'm up to 9, counting the peolple at the clinic) mentioned the possibility of ALS to me, with the exception of the guy who thought it was MG.

The way I got through it was with complete denial. I got furious every time anybody ... neuros or therapists ... mentioned ALS. I spent the time looking (Googling) for anything else it could possibly be, I was DETERMINED that it would not be ALS. In fact, I spent a year joking with my speech therapist that if it was ALS, I was going to go out and buy two cartons of Camels and a couple half gallons of Jack Daniels and be dead by morning.

I think you're either born with the capacity for denial, or you're not ... but I recommend it highly as a way to find peace of mind. If it were me with those symptoms, I'd be wearing Google out looking for ANYTHING else it could possible be.

Take care.
 
Last edited:
Status
Not open for further replies.
Top