shoulder drop and atrophy

[dannyr]

hi there,
Hi there my symptoms started in Jan after a Hep B VACCINE. I have atrophy of left foot also my upper leg is atrophied and is painful after exercise or first thing in the morning (like a sharp pain) I have fasciculations in my calf and twitches in loads of places.

I was tested for creatine Kinase which came back normal, I also went for an EMG test late last month that came back normal aswell.

I am currently waiting for an appointment next month with the neurologist....
Ive tried to forget about theses symptoms but these last 2 weeks I have been getting stretching pain in my upper back (like my body is being stretched) my right shoulder has dropped considerably after looking in the mirror by 2 inches compared to the left side. My shoulder has atrophied and my pec muscle has atrophied (this is on my strong side).

I would like to know the thoughts of people on my symptoms, also I would like to know what you think I should ask neurologist about which tests should ne done, (I don't want anything to be missed) I am off work as this has affected me badly.

I would be greatful for any constructive replies..
Thanks again, Danny

 

[vickim]

Well, my advice to you would keep a journal of all your problems, when they start, what you were doing, how long they last and so on.... then when you go to the dr let him/her do the asking first. Answer the questions and really listen. If you start in with I think I have this or that you could be labeled neurotic.

I would stop the researching now, you don't have a diagnosis and all you are doing is making things worse. Let the dr do their job, they know more than we do and they know the proper tests to be done. Lastly be patient. this process can take a long time, months even years. During this wait enjoy your life, do what you can and work around the rest. No matter the out come of all this whether good or bad, you are wasting time that could be used making memories and you will not get that time back. Sometimes it takes progression before things can be narrowed down.

 

[ottawa girl]

Just to give you an update, I have had my EMG today and the Neurophysiologist has said there are no issues on my EMG. This is good news of course but kind of hard to take in.



Danny,

The above is a quote from you. Why is it hard for you to take in good news?

In my own case, the atrophy set in well after the weakness, and the twitching ensued after the weakness. There's no way I could ever have exercised the affected limb at that point. ( or since) Please keep in mind that atrophy can occur for reasons other than ALS. Are you spending too much time in the mirror perhaps? No one is symmetrical. Is it possible that you were always like this but never paid it any mind? My right side has always been larger than my left - it's rendered shoe purchasing challenging.

I would not presume to ask a neurologist for specific tests - though that is not to say that I am not informed - just a whole lot less knowledgeable than the doctor. Colour me naive, but I'm thinking the neuro would know which tests are required. My main focus at a neuro consultation is to listen very carefully to what is told to me. Not on what I want to say. These appointments, for me, are stressful. I cannot fully absorb information while simultaneously thinking ahead about what I want to say, particularly in these highly and uniquely stressful situations. Of course I ask questions ( from a prepared list), but mostly I listen.

I truly hope you get satisfactory answers soon.

 

[dannyr]

To Ottawa Girl

The EMG was done weeks ago, unfortunately in hindsight my shoulder and back was NOT tested and these symptoms of a bit of muscle ache which I just disregarded have come to a head in these last 2 weeks or so. My right shoulder (MY STRONG SIDE) has CLEARLY dropped and atrophied my shirts feel uncomfortable wearing them its not just some paranoia! Its clearly visible and my friends and family have commented on it, and YES I do look in the mirror when I brush my teeth and comb my hair, I am well aware of physical changes, u just have to look at photos with me last summer to see the OBVIOUS difference.

I am well aware there are people that post on this site with very minor symptoms ie obsessing about a few fasciculations or right arm is bigger than left (when right arm is dominant arm anyway!)
I have seen u often make small fun or sarcastic comments on many peoples genuine concern by suggesting its all in their head....If you don't like the question which is put on the forum for advice I suggest you don't comment or read someone elses, rather than disrespecting someones symptoms and difficult situation. There are many PALS on this site that give constructive answers which I aswell as all new members are appreciative of.


Danny

 

[ottawa girl]

Danny,

I am not dis- respectful. I generally understand and wholly empathize with those folk in difficult situations. In fact, I also find myself in a rather sticky situation and have been so for the last 12 months, 2 months and 4 days.

People often construe an opinion, other than their own, as dis-respectful. Such is clearly the case today. You asked a question. I stand by my answer.

I will, however, take your thoughtful suggestion under advisement. Conversely, please keep in mind, if a member of this " forum" finds me disagreeable, take heart, there is a handy dandy ignore option available.

I sincerely look forward to your update that you do NOT have ALS.

 

[JustTrying]

Do you have weakness? From what I gather, that's the hallmark of ALS. That's why I am pressing forward for answers, because I have weakness. And weakness that is progressing. I'm not even bothering to look and compare my muscles at this point because I know I will just obsess over it and notice things that may have been like that all along. What's funny with my EMG is it didn't pick up anything on my left hand, and he stuck me right where I had been having fasiculations. My left hand is definitely weak, no question. I'm just not sure what to think about EMGs and accuracy. I don't know enough about them.

As for coming here for support and answers, I totally get it. I think it's easy enough to weed out the true problems from the people who woke up one morning twitching after a hard workout. Everyone here was in limbo at some point, and probably had some very real fear and anxiety. So to be told it's in your head, or to be belittled, is quite unhelpful when you're already sick with worry.

 

[dannyr]

To JustTrying,
Thanks a lot for the reply, I can still do things but I cant lift weights like I used to and I get tired very easily, its really hard some days seeing yourself deteriate waiting for answers. Im only 33 years old and until January this year I used to mountain bike 15k once or twice a week and I went to the gym every other day. Unfortunately my exercise now is just stretching and short walks.
From looking at some peoples experience it can depend on the skills of the neurophysiologist that's conducting the test as to how accurate the result is. How old are you if you don't mind me asking, im 33. Many people say dirty emg didn't show until a later test.
Thanks for the last paragraph aswell, im sure many others agreed.
Danny

 

[dannyr]

To Ottawa Girl
Its not just your answers that are dis-respectful..its the way u go about it. Like going back into peoples messages like mine and take a previous quote from an older thread and use it in a way to belittle my ongoing situation. Also comments such as Are u spending too much time in the mirror? when im explaining a change in my physical symptoms is dis-respectful.
And with regards to the handy dandy ignore option to comments, I think I will take u up on that.
Danny

 

[ottawa girl]

Danny,

The writer writes, and the reader reads. Obviously, each from their perspective.

By your own admission, your EMG test results are unremarkable. Typically, such news is a great relief, especially in view of ALS. An EMG done two weeks ago, would, in my opinion, surely have picked up ALS. My neuro explained this during my EMG; I was at the time, only vaguely left side affected, yet he primarily tested my right side. That surprised me, but evidently, the EMG was correctly done, given the unfavourable outcome.

My reference to the mirror was not belittling or disingenuous. Since you clearly feel it was, my sincere apologies. It's human nature to observe one's body excessively when one is anxious. In these situations, one can sometimes not see the forest for the trees.

I am not saying, nor have I suggested, that there is nothing going on with you. My reply was primarily to encourage you not to "write the script" ahead of the neuro consultation and to keep an open mind. Also to sway you away from thinking you have a fatal disease. I would not wish ALS on my worst enemy.

I have been called many things in my life, but I do not recall having been accused of being dis- respectful or belittling.

 

[paul71]

To Ottawa Girl
Its not just your answers that are dis-respectful..its the way u go about it. Like going back into peoples messages like mine and take a previous quote from an older thread and use it in a way to belittle my ongoing situation. Also comments such as Are u spending too much time in the mirror? when im explaining a change in my physical symptoms is dis-respectful.
And with regards to the handy dandy ignore option to comments, I think I will take u up on that.
Danny

I am as frustrated as anyone could be - I get it. But please don't take it out on her.

I just wrote and erased a long response but it's not worth it. Elaine is a very sweet woman and a gift to this forum.

Let's just focus on the facts of your case. Consider her situation and have some decency.

 

[edwards5257]

Agreed Paul!

 

[here4her]

Thanks paul71,

dannyr, take a chill pill brother. Ottawagirl has never told anyone anything but the truth. It is up to them to interpret that as good advice or not. She has been on this forum much longer than you, and is always very constructive and considerate with her posts. It is only the 'twitchers' that get the curt remark, if you have really read back to see who she was talking to.

Read what they were asking, and how many times they were offered advice, and how many times they ignored it and insisted that they still had als, in spite of their neuros diagnosis, clean emg's and everything else. People get tired of that.

If you re-read her responses to you, she is trying sincerely to understand your statements and offer the best advice she can, which is good advice. She has apologized if you wee offended, and you should also offer your apology.

I have read all of your posts, and I think you would have to admit that they have been a bit 'questionable', from beginning to now. Yes, all of our symptoms change. No one is arguing that. Lets be friends here. We all like Ottawagirl. We all accept anyone who is struggling with this disease, and learn to like them as we read their stories and their responses to others.

Please don't take an offensive stance against her (or me). Take what she is saying seriously, there is nothing bad in any of it. We all wish you well, and welcome you here. Just be cool.

Steve

 

[Nighthawk]

@Dannyr:

You need to get a grip on yourself, man.
Just relax, take a deep breath and count down from 10 to 1.

People here are just trying to help, just that.

People at the other end of the line are mostly patients struggling with ALS/MND day by day.
Some might not be in a very bad shape yet, but some are. If you had at least a slightless idea of what ALS/MND does to people who have been struck by it, you'd think twice before responding in a very rude manner to those people who are just trying to be helpful to you.

Some ALS/MND patients are completely paralyzed, meaning that they can't move any limbs at all.
They can't move their arms nor their legs. They can't talk because ALS/MND atrophied their tongues. Their only way to communicate is by "eye gazing technology" which means they can only control a computer by using their eyes, and that makes them to take 45 min. to 1 hour to compose a 2 sentences paragraph.

Other PALS can't type very well by using their hands because they have several atrophied fingers in that hand and can only do "one-finger" typing.

I could go on and on describing you how many PALS here at these Forums are in so bad shape and...even so, they take the time and the effort to help others even when many of them (myself included) are in the twilight of our lives.

So, next time, try to understand the people that are interacting with you here and are also trying to help you even when they aren't obliged to do so.

Now, about your quarrel with "Ottawa Girl", I've got to say that she's been advising you to keep calm, to relax. You should read what she meant in her replies to you between the lines and interpret it the right way. I am with her on thinking that you may not have ALS/MND at all and perhaps it's just a bad reaction to a vaccine which should go away with treatment. Just do not burn your bridges with people here who are just trying to help even when it takes a lot of effort to them to do so.

Lastly, I stand by "Ottawa Girl" (Elaine). She is one of the sweetest, compassionate, lovely, selfless, comforting people I have ever met in my whole life.
Had I met her long ago, I would have proposed her, not kidding, no joke, and no regrets. She is one of the sweetest, cutest and nicest women on these Forums. She is an inspiration for all people that come here seeking help, comfort, and good advice, either they are PALS or newbies like you. So, please, be nice to her and all the others here that are here helping people . . . people we don't know . . . at a very difficult time in our life. That simply should humble you.


Carlos

 

[vickim]

Good advice Steve. It is hard for some here to type but they still want to offer help for those struggling with answers. I am saying this very sincerely that going into a dr office and demanding this or that is going to get you no where. She was trying to explain that. As was I. Drs are funny people. I worked with them as a paramedic and I have been a patient for a long time.

There is a difference in the way you approach your dr. I found it much easier to just be the patient and listen to what the dr is saying. I question, but only after the dr has spoken. My dr asked me what I feared was wrong. I told him everything, he laughed and said that he would narrow it down for me. After his exam he ran down a list of what he was sure I did not have. I breathed a sigh of relief and then he said that until more tests were done he would not tell me anymore. But at that point I was happy because he ruled out als and ms.

Long story short, don't have tunnel vision about als. It could be a lot of things and pray it is something treatable or even better curable. Please try not to take offense about the advice given. All of it is given with love and concern for your problem. Some of it will be blunt but truthful. give true thought to all the advice given. Doesn't mean you have to take it.

Having multiple threads makes you look frantic and neurotic and is also hard for people to follow your story. Everyone here is desperate for answers, options, hope, help and companionship. Most are dying and still trying to help others so take some of this with a grain of salt.

Ottawagirl is a loving, funny, smart and compassionate person. She has helped me immensely and I treasure her and so many others here. I like that if she feels you need a kick in the pants she will give it and at times I did and I thank her for it.

 

[vickim]

Drat my post went to mod. Carlos you said basically what I said only better. Well done. You too Steve. Forgot to attaboy Paul.
I love you Elaine, you are the best.