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Julie

New member
Joined
Jun 13, 2007
Messages
2
Reason
PALS
State
SINGAPORE
The story so far:

I am 34 years old, mother of two. In July last year I noticed a difference in the way I was walking on my left leg, in the foot area. I could still walk but was using other or compensating muscles to achieve the same walking style. I am an Australian living in Singapore. I saw a very well established Neurologist in Singapore and he pretty much thought I was imagining my symptoms however sent me for a brain MRI anyway. This came back clear. I forgot about the walking issue for a while however noticed that it was slowly getting worse. I saw the same Neurologist again and he still implied it was in my head. I then found another Neurol0gist who believed I wasn't imagining it and he has been monitoring me ever since. With him I have had a spinal MRI and a VER which have also come up clear. He initially suggested ALS could be what I have but still too early to tell. I saw another Neurologist in Sydney in December and he couldn't definitively diagnose anything either. My symptoms to date are as follows:

1. Walking getting progressively worse however can still walk. I am physically placing my foot down rather than it naturally moving forward. The right leg is okay.
2. Muscle fascillations, all over body but they come and go. The doctor gave me some nerve relaxing medication, if I stop taking it the fascillations come back. They feel like bubbles/ worms under my skin. Whilst on the medication they are here and there but not that troublesome. The medication could be giving the appearance that they have gone.
3. Just recently muscle twitching has occured. These I can see on the surface of my skin. They move around my body, mainly in the arms at the moment.
4. Eye floaters developed in about November last year and have become progressivley worse.
5. Constant fatigue, there is the rare day when I feel okay but most days I need to sleep even if it is only for 15mins. I am usually okay after that but not as sharp as I use to be.
6. In the last few months I've noticed my left calf muscle has started to shrink. Given my amended walking style I can see how this would happen but I can't seem to build it up.
7. In the last few weeks my jaw bone has started to click when I open my mouth or yawn. My tongue has also felt thick and is now pressing against my teeth. I have teeth marks on my tongue.
8. For the past few months I've felt a numbness on my face, it comes and goes and I feel my face muscles are getting weaker. My smile has also changed. My cheeks feel heavier when I smile.
9. For about two weeks in March, I had trouble breathing, I couldn't take deep breaths, or would need to "breath twice" to fill up my lungs. This symptom has gone but I do get short of breath quite often. Voice projection is weaker.
10. I am told I have nazally speech but I kind of always have so I'm not sure if it is getting worse or just what it use to be.

Does this sound like the early stages of ALS. I am contemplating coming to the USA to visit one of the ALS clinics and get yet another opinion. I'm not sure if the disease is as common in Asia. I read somewhere that ALS in younger fitter people may take longer/is slower to develop/? Is this true? My doctor here says if it was ALS and If I've been showing symptoms since July 06 it would have progressed alot faster. Please, any feedback on my situation would be greatly appreciated. The prospect of having this disease is doing my head in.

Julie
 

boxer22

Active member
Joined
Jun 2, 2007
Messages
83
Reason
Learn about ALS
Country
US
State
nc
Julie said:
The story so far:

I am 34 years old, mother of two. In July last year I noticed a difference in the way I was walking on my left leg, in the foot area. I could still walk but was using other or compensating muscles to achieve the same walking style. I am an Australian living in Singapore. I saw a very well established Neurologist in Singapore and he pretty much thought I was imagining my symptoms however sent me for a brain MRI anyway. This came back clear. I forgot about the walking issue for a while however noticed that it was slowly getting worse. I saw the same Neurologist again and he still implied it was in my head. I then found another Neurol0gist who believed I wasn't imagining it and he has been monitoring me ever since. With him I have had a spinal MRI and a VER which have also come up clear. He initially suggested ALS could be what I have but still too early to tell. I saw another Neurologist in Sydney in December and he couldn't definitively diagnose anything either. My symptoms to date are as follows:

1. Walking getting progressively worse however can still walk. I am physically placing my foot down rather than it naturally moving forward. The right leg is okay.
2. Muscle fascillations, all over body but they come and go. The doctor gave me some nerve relaxing medication, if I stop taking it the fascillations come back. They feel like bubbles/ worms under my skin. Whilst on the medication they are here and there but not that troublesome. The medication could be giving the appearance that they have gone.
3. Just recently muscle twitching has occured. These I can see on the surface of my skin. They move around my body, mainly in the arms at the moment.
4. Eye floaters developed in about November last year and have become progressivley worse.
5. Constant fatigue, there is the rare day when I feel okay but most days I need to sleep even if it is only for 15mins. I am usually okay after that but not as sharp as I use to be.
6. In the last few months I've noticed my left calf muscle has started to shrink. Given my amended walking style I can see how this would happen but I can't seem to build it up.
7. In the last few weeks my jaw bone has started to click when I open my mouth or yawn. My tongue has also felt thick and is now pressing against my teeth. I have teeth marks on my tongue.
8. For the past few months I've felt a numbness on my face, it comes and goes and I feel my face muscles are getting weaker. My smile has also changed. My cheeks feel heavier when I smile.
9. For about two weeks in March, I had trouble breathing, I couldn't take deep breaths, or would need to "breath twice" to fill up my lungs. This symptom has gone but I do get short of breath quite often. Voice projection is weaker.
10. I am told I have nazally speech but I kind of always have so I'm not sure if it is getting worse or just what it use to be.

Does this sound like the early stages of ALS. I am contemplating coming to the USA to visit one of the ALS clinics and get yet another opinion. I'm not sure if the disease is as common in Asia. I read somewhere that ALS in younger fitter people may take longer/is slower to develop/? Is this true? My doctor here says if it was ALS and If I've been showing symptoms since July 06 it would have progressed alot faster. Please, any feedback on my situation would be greatly appreciated. The prospect of having this disease is doing my head in.

Julie
Hi julie,
I do not have als but i was having some scary symptoms also, Especially the fasciculations, i also thought that fasciculations are the same as twiches?, theres no diffrence in the two, fasciculations can be seen under the skin sometimes and sometimes not. I am pretty sure about them not being different but i could be wrong. Maybe someone else will address that. I also have eye floaters and that is not related to als at all, i have been having those since 3 years ago. I have told my doctors about them lots of times and none seem worried. And the jaw clicking thing, i would think that would also have nothing to do with als. There is a lot of great websites that tell all about als and their symptoms. Also if your doctor is concerned about als why hasnt he sent you for an emg? That doesnt make a lot of sence, Especially since he sent you for the mri's. Also has the doctor noticed that one of your calfs is getting smaller? Maybe some of the pals will let you know what they think since i do not have als. But i was having a lot of your symptoms, like the fasciculations, i also have jaw clicking and the floaters which are not related to als. I hope that helps some.
Ashley
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
If, everything you say is true and you are not imagining any of this......and just for the record, i believe you 100%.......then, i would go to a specalized neuromuscular clinic in the USA. There are also several around the world, possibly closer to you. Be careful which one you choose, do your homework.

There are several things it could be. You need to have an EMG done by an expert. ALS is different in everybody, it could take 2, 5, 10, 20 or 40 years to get really bad.

I have had, all the exact same things you discuss, even the on/off breathing issues, shrinking calves, tongue, face numbness, tongue hurting....i'm still undiag, but we are sure iv'e got neruomuscular something.

Good luck and ask all the questions you want.

rgds,

jamie
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Julie,

Sorry you are having to deal with this and raise a family.

Yes, I agree with Jamie, you need to get to an ALS Clinic. Most neuros are not up to par on ALS.

Not familiar with clinics outside of US. sorry

Hang in ther!

CJ
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
691
Country
US
State
NY
Hi Julie - I am really sorry about your symptoms. I have had many of the same ones, especially the feeling of having to lift my leg for each step. Many PALS have disproved the theories on fasciculations, so just the fact that you are having them at all, along with your other symptoms, is bothersome. When you mentioned the jaw symptom, though, that is a classic symptom (along with ALL of your other ones) of Lyme disease. Lyme causes the jaw to click, grind, cause pain and I even read that it effects the left jaw more than the right. Lyme is a possibility and would be a great relief! Good luck. Leslie
 

janf

Distinguished member
Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
HI EVERYONE I WAS DIAG 2006 WITH ALS I HAVE ALL THE ROUTINE SYMPTONS BUT I DO HAVE EYE FLOATERS JAW CLICK LEFT SIDE LYME TEST WAS NEG. i GO TO ALS CLINIC EMORY HOSP ATLANTA GA. I SEE DR. GLASS GO SEE AN ALS SPEC. GOOD LUCK. JAN & GOD BLESS
 

Julie

New member
Joined
Jun 13, 2007
Messages
2
Reason
PALS
State
SINGAPORE
Hi Everyone thanks for all your replies,

In response to some of your questions,

Doctors ruled out MS as both brain MRI's (done about six months apart) came back clear. I asked my doctor about Lyme disease a few months ago and he didn't seem to think it was an issue for someone living in Singapore. I did travel to Thailand just before my symptoms started but I don't recall coming in contact with any tics. I will ask to be tested for this anyway.

I am going to see my Neuro again next week and ask him to give me an emg? Should I be asking for any particular area, I'm not really sure what this test involves? I am looking into ALS clinics now, my first instinct is to research those in Australia as they are a bit closer, but if I was to come to the US can anyone recommend a clinic in NYC, my husband is going there for work soon so I might try and tag along. What are the waiting times for appointments like? If further testing is commissioned is there a waiting time for these as well. Singapore is quite good in that regard, you can usually get appointments within a week if you are prepared to pay for it.

Thanks again for your responses I really appreciate it, take care

Julie
 

janf

Distinguished member
Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
Hi Julie, Wow! What an adventurer you are, sounds interesting. As for the EMG it depends on what the Dr. orders. He may order upper and lower. They even did my tongue. I live in Ga. we have long waiting list usually a month or so. I don't know about New York but continue to ask around on these forums and someone will know. I'll ck also for you. Most of the time you will go back for testing. They may make an exception in your case. I would come to U.S. and go to the ALS spec. believe me they are seeing ALS daily so, i really believe they can help you. You are in my prayers Julie. Janf
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
Hi Julie. We do have some Australian members so possibly they will offer opinions.
AL.
 
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