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bart1

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I posted here a couple of times before. After my last neuro visit (18th August) some things happened. I was twitching for 22 months got a clincal said it was BCFS. ( I had a bunch of clinicals in the past 22 months, everytime ok)

A week after this clinical my back- left shoulderblade started twitching non stop. The following week my left shoulder starts to hurt. So now it's still (shoulder) twitching and my shoulder (yop of the shoulder) is hurting. I guess the twitching and shoulder pain are related and I think this is my ALS onset.
Did anyone else with shoulder onset experienced pain in the shoulder before weakness?
I still can use my arm but ofcourse the shoulder hurts. I'm seeing my neuro back at the end of the month. Any thoughts?

Thanks you
 
I am not sure if it is onset, but, I can tell you that my husband started about a year ago with shoulder and arm pain, then fasiculations, and muscle loss. He now has lost alot of the use of his arm. We have been told that it is possible ALS, by 2 neuros, however we were told that the pain is not common as the initial symptom. I would say that he did have pain before weakness, however now the weakness is as prevalent as the pain. Let me know how you make out with the neuro, I know shoulder and arm pain is not easy. But he was also tested for several other illnesses that can cause shoulder, pain and weakness.
GOOD LUCK
 
My mom had left shoulder onset as well as bulbar, but she never experienced pain from it.
 
Bart, my goodness you have to let this go. You are so convinced it is coming for you that any ache/pain you experience is viewed as the "beginning of the end". Your proof seems to materialize soon after every doctor's appointment. I mean this kindly, you have been around here I think as long as I have, so I "know" you as well as any of us can in a setting like this, and I think you... are out of control. It would be different if you asked for insight regarding what ailment shoulder pain could indicate, but you don't; you state that you think this is the beginning of your ALS. In doing so much meaningful advice or feedback is lost/withheld because you are probably being viewed rather negatively (to those who have been here a while) as one of those posters who never really listens and continues to troll for support that what they are experiencing is indeed ALS when everything else suggests it isn't. Ok, that is my two-cents. I truly hope you are feeling better soon-

Lydia
 
Bart,

Lydia is being kind, and she is correct.

You are really trying to milk this for what ? Are there some meds that you are not taking , but should ?

You need to change the tune , its more than 22 months because it seems like you have been here forever , with the same story.

STFU until the neuro (at the end of month? This Month?) gives you a DX.

Sheesh
 
Hi all,

I'm really not looking for an als diagnosed but this is really bothering me
Left shoulder pain + a lot of fasciculations at left shoulder and shoulderblade. (this is happening the last couple of weeks) ]Iff you add this things together I'm not sure how many other illnesses it could be? However today is my 23th month of widespread twitching
 
bart, I too have been twitching for about 2 years now, have had every test imaginable, still no diagnosed. I had pain in both shoulders and lost range of motion in both. I was told I had frozen shoulder. I got a couple of shots in both and it finally went away. I would not worry too much, it could be a ton of other things. The only thing I have been diagnosed with so far is possible Lyme( Tests are showing I had it, my Gp and rheumy on in conflict as to if it is an active case right now) and low vitamin D around 5 which I am taking 50,000 a week in pill form. So just try to relax a little bit until your appointment, Margaret
 
Hi Margaret,

Thanks for your reply. The thing that worries me the most is the fact that my left shoulderblade is twitching NON Stop, the whole shoulderblade, with fine tickling feelings and then my left shoulder hurts. I really think does things are related. I think BFS twitching is very different from this shoulderblade twitching at this moment.
 
Bart, how about this:

Until a doctor has told you otherwise, why not try convincing yourself you have frozen shoulder syndrome? Yes, you can have fasciculations with frozen shoulders. All twitching means is that something is exciting your muscles (whether they are constant twitches, semi constant twitches, irregular twitches, painful twitches or ticklish twitches!).

What is the harm in abandoning the fixation on ALS?

I echo Glen's comment, to the tee!

Zaphoon
 
I had twitching for 50 years. Did it lead to ALS? Who knows but I finally have it.

So if you are worried that twitching leads to ALS then in about 48 more years you could have it.
 
hi

I went for an echo to the hospital but there was nothing to see on it, no inflammation or so, so is this bad news? Because they ruled out the normal things.... I'm still having pain in my shoulder along with a lot of twitches...
 
OK Bart ,

Lets try a different tact. The doctors you are seeing are finding nothing.

Have you consulted a "clinic for sports medicine" to get them to check out the shoulder ?
Have you tried theraputic massage ?

Glen
 
... I have tried to refrain from joining in, because I don't think there is anything anyone can say, if hearing it from a medical professional does not do the trick. But..... this is what I don't get: If you're not going to a sports medicine doctor (such as Glen suggested) why aren't you? Why look for the worst case scenario cause and reject probable reasons? Its not just you, Bart, Dr Google steers droves of people to neurologists and encourages them to fear dire conditions, whereas, before the cyber doctor entered the scene, people who had shoulders with problems would go to an osteopath, GP, or orthopedic doctor, try a little physical therapy, wait a few weeks or months, see what happened, and in the meanwhile get on with their lives...

http://research.microsoft.com/pubs/76529/MSR-TR-2008-177.pdf

The above is a rather lengthy research article studying the phenomenon of cyberchondria. In TABLE 1, there is a list symptoms, some common non-serious explanations, and more serious concerns, along with associated probabilities, from each of the random crawl, Web search, and specialized domain search.... Look at what turned up, as well as read the second paragraph following TABLE 1 ! Seriously consider printing this out.

Here is a quote taken from within this research:

Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search
RYEN W. WHITE and ERIC HORVITZ Microsoft Research

....In summary, expert clinicians often probe subtleties of symptomatology and quickly fuse together multiple findings, including demographic considerations such as the gender and age of a patient, in assessing rough likelihoods of different explanations for symptoms, given a complaint. The subtleties of presentation and insightful fusion of demographics, and multiple signs and symptoms are not easily accessible by people seeking diagnostic support with web search. The tendency of web searchers to start with a single symptom that is coarsely reported and also coarsely referred to in Web content can stimulate potentially unwarranted anxiety

Bart, from what I can gather, the way any sort of fixation on unfounded fears is best treated, is to steer one's self away from thinking about them, consciously make the choice to do something else with your time and with your mind. Choose to trust the doctors (who have had at least 12 years of training to become neurologists) over what an internet search turns up.

good luck to you, I hope you feel better soon.
 
Bart,

As I have posted before, sorry for your troubles, but you don't seem to be truly here for help. Some of the people on here have TRUE difficulties and still have the courage and strength to provide support for people that are scared or unsure about their symptoms. You seem more interested in arguing about everything without being more introspective about your situation. If you were truly concerned about your situation, why wouldn't you look in to some other more likely reasons for your symptoms? Have you had an MRI on your spine or shoulder? Seen an orthopedist or sports medicine guy? To just assume the worst and fixate on ALS is really unhealthy, not to mention very disrespectful to those who have been actually diagnosed and still try to provide you with some insight. Also disrespectful to the doctors that are trained to help, but you won't accept their opinions or diagnoses. Find yourself a good hypochondria website and put the ALS thing behind you.
 
Hi,
I'm sorry I come here again, I know a lot of you think I'm just a hypochondriac.
I went back to my GP with the echo (which I already know was normal), he says he eliminated everything he could and that I really have to go back to the neuro and have an EMG, he says he thinks it could be MND afterall. I'm completely in shock. He called for an earlier app. but with an EMG the first one was still 30th Sept. He noticed slight weakness in my arm and said this kind of continuous shoulder blade twitching is not normal. I explained him that it's like a kind of constant crawling- fine twitching over bigger part of my shoulder blade, not just that one place anymore. This is constant and all at the same time over a bigger space at the shoulder balde . I can manage to reduce the pain in my shoulder and arm with 70% with pain meds.
Sorry I can't explain myself properly at this moment but I'm really scared and upset. For 23 months everybody said I was fine and now they come up with 'in medecin enothing is 100% and there always are exceptions' I always knew something was really wrong but always hoped I was going to be ok. Hope is gone. I'm 30 years old and don't know how I'm going to handle this. sorry
 
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