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wilmanj

Member
Joined
Aug 30, 2012
Messages
10
Reason
PALS
Diagnosis
09/2012
Country
US
State
az
City
Phoenix
Hello, I had been experiencing some symptoms and visited my neurologist today. He was non-committal about what my problems could be. He stated it could be something neurological that is very treatable to something a lot worse. When I asked him what that "worse" would be, he indicated ALS "but don't worry too much, we need to run some tests". Needless to say, I have been in a near panic. I seem to have some symptoms but others do not match.

This started a few weeks ago when I noticed a lot of muscle fatigue in the lower back abdomen, hip and upper thighs. This was really bad up to about two weeks ago, it was so fatigued I could hardly walk. That has improved, still weak but certainly I feel stronger in those weight bearing muscles. The weakness has moved now to one foot. I have been cramping in the arches but that is when I try to grasp items with my toes, similar cramping in calf muscles but this occurs during muscle flexing. Weight loss, muscle loss. Fatigue when standing or walking, fine when seated. No issues with swallowing

I tried searching the web but most stuff is rather vague. Has anyone else experienced these types of symptoms and then later diagnosed with ALS. My EMG and blood work is scheduled for next week but my anxiety level is through the roof. Thank you.
 
Hi,

Gosh, I'm surprised (shocked really) that the neuro would have even mentioned ALS before running the actual tests. There are so many other things it could be.

Not surprised at your panic - we've all been there. Try to relax (Yeah sure!), but there's nothing you can do about it until you've had the tests. I've not heard of ALS starting that fast, though I don't know a whole lot about it compared to the more senior folks on this forum. You may find out that you have something very treatable like a pinched nerve - so stick with that until you know for sure.

Do let us know how it all goes for you and good luck next week.
 
How old are you ?
 
Sorry to hear that you're dealing with some issues, but please remember that ALS is very rare, and chances are, it is something else. You can't do anything about it until more time and tests are done, so try not to think about it, and remain positive.
 
just try to keep in mind the first part of your Neuro's answer: could be something very treatable
 
First post to mod eration...

Hello,

Gosh, I am really surprised that ALS was even mentioned before the tests are completed. That being said, I would urge you to try to relax (yeah right!). Your panic and stress are understandable; all of us have experienced it at one time or another and I do sympathize. I know very little about ALS, but I don't recall ever reading ALS symptoms manifesting in the way you describe or as quickly as you mention. In my case, symptoms were very subtle and just mildly annoying. It was well over a year before I sought medical attention.

So, with any luck at all, your tests results will indicate you have something treatable.

Please comeback and let us know what happens next week. In the interim, try to stay off the computer until you have a definitive diagnosis so as to reduce your stress.
 
Thank you everyone, I'm just going through all the replies and trying to figure out how to navigate through this site, particularly how to reply to one specific reply or does one have to post a general thread.
 
Wilmani -please do not stress yourself out with this - did you say you have had these symptoms for a few weeks? Or am i missing something.... i must be missing something because symptoms over a few weeks and able to see a neuro soooooo quickly - have you been having symptoms alot longer... and just noted the ones above over the past few weeks?
 
Thanks, trying hard to keep it together. I have had symptoms since early July 2012, maybe late June which started in my back and hips. The leg thing I did not notice until mid August and my family practictioner sent me to a nuerologist. I saw him last week on Thursday and on Fridany I had the EMG and nerve testing and by Friday late afternoon he told me his diagnosis. He was rather firm in his convictions and although I am next scheduled in two weeks for a brain MRI and spinal tap, he told me he hopes to be wrong but he does not believe it could be anything else. This has all been through the Mayo Clinic and another next step is to meet with one of their two ALS nuero specialists but that appt is not until end of October.

So stressed out. I never noticed ANY arm muscle twitching. Absolutely since he told me of the diagnosis, my arms are all shaky and twitching. I want him to prescribe me with an anti anxiety medication to help me relax. Even my hands are trembling now and this NEVER happened until he told me his diagnosis. Family members are trying to comfort me that it is nerves and probably is but my mind just goes to a very dark place.
 
Wilman, there's a great thread about health anxiety. Check it out.
You can post directly to a person's profile page by clicking on their screen name or avatar.
Once you've mad a dozen or so posts you'll be able to post private messages.
There are a great number of words that trigger a trip to the moderator. We've lost several moderators recently, so David is managing by himself right now.
 
You haven't been diagnosed. Wait until you get your EMG and talk to a good Neurologist. The fool who said anything about ALS to you is not a good neurologist and has done you a great disservice.
 
I wrote you a reply that might be helpful. It's in mod land still. Long story short, it's hard to believe you meet the strict diagnostic criteria for ALS and I think there are a bunch of questions I'd be asking that doctor, if I were you.
 
So, in one day, you saw a neuro a d he didn't have any answere, of course, but 4 days later, with only an EMG he's said you have ALS? Seriously?

People here spend months trying to get diagnosed. Something sou ds very strange with all this. I just don't see how ALS could be diagnosed without ruling out a TON of other things that cause muscle fatigue.
 
Yes, actually I saw the neuro, then the next day he set me up for EMG and NCV and that evening he told me he strongly suspects it is ALS and further that he did not think it will be anything else but ALS. He was scheduling my for a brain scan and spinal tap which will be in two weeks. He tells me this on Friday afternoon,5:00pm before a holiday weekend and no way to access him.

Thanks to great support throughout from various individuals, my wife has scheduled me with the Barrows Institute in five days where I meetwith their docs, therapists, social workers, nutritionists, etc to review existing and upcoming tests. Those neurologists and others have consistently said it is surprising that my initial neuro gave the diagnosis so soon.

Another odd thing is yesterday my wife called the original neuro who firmly told me he believed ALS but one the phone with my wife, now I don't know if he was backtracking because she confronted him but he told her that he believes is is something else (my mind is still racing a bit but I don't recall exactly, but I think he said is was some other progressive motor nuero diesease that is very rare and only affects to lower limbs) I can't make heads or tails of this doctor, I know for a FACT what he told me I have ALS and further he told me that while the average life span of ALS is what it is, he felt that mine would be likely only a couple of years.

At this point, I am trying to stay calm, anti-anxiety meds I started taking yesterday have helped tremendously. I'm pissed the original nuero did not prescribe me that as he sent me on my way after giving me the news. And wait until my appointments with true ALS specialists. I am grateful for so many good replies on this board. I was really devastating originally but now I've regrouped a bit to push the doctors for better qualitative answers rather than weakening nerve findings on the EMG NCV on my leg and back and that my arms felt weaker than they should to this doctors. Admittedly, I am a weak individual, fully sedentary life style
 
Sometimes it even takes YEARS to get diagnosed. It took my uncle several years before they were sure he had a. L.s. And sometimes we don't even have an identifiable mnd. I'm also surprised the doc said that diagnosis so quickly!
 
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