Status
Not open for further replies.

AndyDJX

Distinguished member
Joined
Mar 4, 2009
Messages
257
Country
US
State
MA
City
Boston
7 years with symptoms but no diagnosis?

Hello,

I find myself back here because I want to know if anyone has heard of ALS-like symptoms that go on for a very long period of time.

My first symptom was fasciculations back in the fall of 2006. Soon after, I had exercise intolerance, that would leave my muscles incredibly weak for several hours (real weakness, as in couldn't lift certain fingers, but the strength would always return.)

After the first year I got atrophy in my thenar muscle on my right thumb. Some doctors called it muscle wasting and "clear atrophy" and other disagreed and said it was just how my thumb muscle looked. I know that it didn't always look like that. I have developed similar muscle loss in my foot.

Here I am in 2014. The good news is that I have yet to have any dramatic change where permanent muscle weakness has presented itself over this 7 year stretch. I can still walk, button my shirts, talk, etc.

However, my symptoms persist and have gotten worse over time. My muscles twitch every day and they shake like crazy. They don't just "feel" shaky, they are shaky, especially after any type of physical exertion as simple as carrying in groceries. My face muscles shake if I scrunch up my nose or hold a smile for more than a few seconds.

The muscles are also incredible sore after exertion. If I do something like shovel snow or even use a screwdriver for a while, my muscles first get weak, and then when the strength returns they are intensely sore and painful to touch.

I feel like, from what I know of ALS, 7 years without any dramatic presentation puts me pretty safely in the "not-ALS" camp. But I'm concerned that these symptoms not only continue, but get slowly and progressively worse over time.

Has anyone heard of this or a condition that may cause similar symptoms?

Background info: I have seen several doctors who can't explain it. I'm a 31 year old male. I don't have hypochondria or health anxiety. It has been several years since I had an EMG but they have all been clean with the exception of slightly reduced nerve conduction in my right arm, fasciculations and sings of "mild demyelination." I also experience bad migraines.

Any help or suggestions are appreciated.
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
Everything you are describing is what I go through plus other things. I have a form of MD and it took a muscle bio psy to fing it. I am nearly 7 years into it but it took 5 years to get the answer. You may want to look into that.
 

monster

Distinguished member
Joined
Apr 30, 2011
Messages
125
Reason
Other
Diagnosis
00/0000
Country
US
State
NJ
City
USA
I don't have any idea what it could be but I too have had symptoms since
2006 with no diagnosis.
I hope your doctors figure it out
 

Tokahfang

Moderator emeritus
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
City
Richmond
I'm glad you're still doing well, Andy. Thanks for the help you've given around here in past years.

The truth is that benign, dodgy neurological problems get almost no research whatsoever. If what you're looking at isn't a variant of muscular dystrophy as Vicki suggests, I'd be very surprised indeed if their was even a name for what you're dealing with. In a world with crippling and highly disabling neurological diseases, especially with neurology research being so expensive and difficult, they are still working on a triage basis.
 

AndyDJX

Distinguished member
Joined
Mar 4, 2009
Messages
257
Country
US
State
MA
City
Boston
Thank you for the feedback-- and good to see you Beky; hope you are doing well these days. You're totally right about the "dodgy" neurological conditions. I remember a doctor telling me that I am lucky to not fit neatly into a clear diagnosis, and I try to keep that in mind. And after 7 years of poking around on the internet about this stuff, I know there are a lot of people out there with weird neuro problems that don't have any clear answers or solutions, but it seems that generally they are in much better shape than the people with more dramatic presentations of diseases like ALS, MS, etc. Learning to live with the symptoms and not having a name for whatever it is that causes them is part of the process.

And I'd say that most of the time I am okay with that, but I also would love to have some answers, explanation or most importantly, some kind of treatment. My wife is the only one who really knows that a night of dancing at a wedding or going for a hike will leave me incredibly fatigued and sore for sometimes days and my only explanation is "well, because of...this thing...that I have, but don't really know what is."

The MD path makes a lot of sense, actually. One set of symptoms I didn't list above is the problems I have with my eyes. Not only can I tell that the muscles are weaker there (moving eyes around, shaking eyebrows, etc) but I also experience a great deal of visual disturbances like temporary blind spots and flickering vision. I've usually chalked those up to my migraines.

I've never had a muscle biopsy; maybe that's the next route. I saw a naturopathic doctor at the suggestion of my PCP and he actually seemed the most willing to try and get to the bottom of all of this, but I balked at some of the expensive testing since it's not covered by insurance. It's a new year, maybe I'll go back to that.
 

Melm5199

New member
Joined
Jul 30, 2013
Messages
2
Reason
Loved one DX
Country
US
State
MA
City
Brockton
Hi Andy, My name is Melanie. I do not have symptoms, but my mom has had strange symptoms since 2004, been worked up at all 4 major Boston Hospitals, her symptoms are mostly slowed movements, slurred speech, difficulty keeping eyes open, drooling, difficulty swallowing, and difficulty talking. In 2007 a Brockton Neurologist diagnosed her with "Supra Nuclear Palsy" for which there is no cure. To make a really long story short, two years ago, she fell and broke her hip. She underwent hip repair surgery with propofol induction at a Brockton hospital. When she woke up from her surgery, ALL of her neurological symptoms were GONE! Although, she did need therapy to regain strength from being bedridden for two years. We removed her feeding tube, she started eating, talking, walking, smiling, and I moved her out of nursing home. She climbed football stadiums and baseball parks to watch my kids play ball. This lasted 9 months, when all the symptoms returned. She required mechanical ventilation with PROPOFOL induction to have an MRI, lumbar puncture and small bowel biopsy performed at Beth Israel Deaconess Hospital. When she woke up ALL HER SYMPTOMS WERE GONE! This lasted 3 months. Which brings us to today. She is back in a nursing home, with a feeding tube, can't walk, talk, swallow, or keep her eyes open. STILL NO DIAGNOSIS. She is pending a "muscle biopsy" to diagnose. She is having propofol again. WHEN WILL THEY REALIZE THAT THERE IS A LINK BETWEEN PROPOFOL AND whatever this hideous disease is?

Reason for my post: IT is a shame that for years people are misdiagnosed, not diagnosed, and are allowed to be frozen in their bodies. Something MUST BE DONE!
 

Melm5199

New member
Joined
Jul 30, 2013
Messages
2
Reason
Loved one DX
Country
US
State
MA
City
Brockton
also I believe demyelination is a sign of MS.....good luck with your battle.
 

Bliz

Distinguished member
Joined
May 24, 2011
Messages
120
Reason
Learn about ALS
Country
EU
State
CZ
City
Prague
Andy, you might remember me (Blizna was my full nick).

I can see - you have absolutely the same symptoms as I do! Face trembling when smiling (or using these muscles intentionally), weakness after using a screwdriver was something that really bothered me)..and I am also nearly 7 years here.
I do not got for any EMGs anymore but my clinical remain normal. I too sense it is getting worse, in terms of fasciculations, it is definitely worse than a few years back. But be it MND, I believe there would be some damage obvious to a neurologists.
My specialist tells me it is a syndrome where probably inter-neurons in spinal cord do not inhibit discharges and thus my motor neuron fire. Who knows. One thing is for sure and that is that because of occassional tongue fasciculations I will barely ever get rid of ALS fear.
 
Status
Not open for further replies.
Top