Questions

[TomR1972]

I have posted many times before, and here I go again. Now my issues all started within about two weeks time. It went from a very sore shoulder "blade" that affected my thumb usage then to full body fatigue where both arms and legs felt like led. The shoulder quickly cleared up. Then it moved to my legs feeling like rubber where I had to take baby steps for fear of falling. I had tight legs that felt tough to move up and down steps. During this three week period I had horrible headaches, a feeling of numbness on one part of the side of my face that was like novacain wearing off. Included was eye pain and it was very hard to concentrate on anything.
That complete body fatigue has left though I still don't have as much energy as before. Now my main symptoms are buring muscles that tire easy. Here is the kicker, I have had a tired jaw when chewing but that comes and goes. I have upper shoulder tiredness that has better and worse days. I have had low back pain that burns when leaning forward. As of recently my most common symptom is that my right leg tires very quickly upon use. The muscles are sore to the touch and my whole leg from butt to calves ache/burn and tire easily. There are times this is not as much of an issue but more than not, it is the biggest issue. I have noticed more pain all over. When I am asked about cramping or read on it regarding als I hear the term charley horse type pain. Nope dont get that, I get buring gnawing pain, not the terrible pain due to a charley horse. About a month ago I had a lot of muscle twitches but they have since quited down to only a few a day.

When looking up BFS I hear no atrophy and weakness. Well I could still walk, I passed the in office neuro test twice with two different dr's however I wasnt at my worst when tested. I had a half-a$$sed emg done where they tested my right side. One part of my leg had a constant sound on the test that made the dr ask if i had back pain. Well at the time no I didn't but of course the "have to be PC" dr wouldn't elaborate on this question. So for all I know if I was at an als clinic the dr would have at least given me a heads up upon why that question was asked and what it might mean. Sorry for rambling on but with my leg pain I also have had lots of pain between my thumb and first finger closer to where my thumb connects to my hand by the wrist.

Questions are, am I looking at having 5 emg's over a period of time because this is probably slow limb onset als? I have so many tests done that I am not sure what else this can be. I keep hoping BFS but not sure. On their site they tell everyone with symptoms such as posted here not to worry that als is so rare and its sounds just like bfs. I read over there how only a couple of people ever end up with als that post on their site, probably bs. However when I am here, I am told go to ALS specialist "which I totally agree and will very soon do" but I have such a problem with each side being so far apart. My mind is rolling like crazy. Has anyone expeirenced such a situation? I keep looking for atrophy but not seeing it. Not sure if I should have had a positive emg while having twitches or if that wont come out until much later. Soon I will be probably going to the San Fran Als center but would like to hear what anyone thinks of my symptoms and situation. Thanks for your time and reading so a long winded post.

Tom R

 

[zac111]

wish i could help you sounds like you have alot of anziety.trust me i know i still have some ive had twithes and nfatige with trouble swallowing and with salavi problems to and widespread twithing ive been to 3 neuros in 5 months with one of them being the director of an als center and he said no als ive had one emg done correcly so even though the als doc said no als it leaves me wondering with the people here that have the bulblar type that say their syntoms took years to show als i get a little on edge but if you are i have it theres really nuttin we can do,but we can enjoy life while we have it.i can tell you from experiance that anziaty makes things worse and they say numbness isnt a sign of als.try and calm down i got so stressed out before that i had trouble breathing the als doc told me depession and anziaty can do lopts of things to the body so just waity ans see what the als center says it could be stress.

 

[TomR1972]

hello

Anyone else any thoughts?

 

[Jamiet]

Tom,

The only thing, that will tell if you have ALS, is time. Time... it will take time to show it's face. There is nothing you can do, you can go to 20 (i know from personal experience - i went to 5) doctors right now, they are going to tell you the same thing. it's more than likely, your EMG will not show much, until there are real problems, that is the truth. What you read about he EMG showing well in advance is not the majority, but i guess it's "preached".

So, what you do, is, make you an appt. at an ALS clinic, becuase, at this point, they are the only ones who will tell you yes and help you or no and you will belive it.

In the meantime, get specalized testing for lyme, MG, LUpus and other issue. i would get a complete lyme panel, to include western blot, as lyme can mimic alot of syndromes, esp. with the bells palsy and other issues, with no atrophy.

hang in there, its going to be hard, but it does not sound like you have ALS ok!

You'lll be ok

take care

rgds

jamie

 

[DavidGL]

Tom,
You can't diagnose this thing yourself or from the internet. Some of your symptoms do not fit the model of ALS but do fit into other categories of MND. But there are always exceptions to every general rule. You could even have more than one malady at the same time.

You have enough MND symptoms that you need to get into the hands of an ALS clinic. Let them be your guide...not the internet.

DavidGL