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NO ALS. You said about the Mastoid bone. Maybe you have Mastoiditis, very painful. Sinus cavities get cloged to the point of meningitis. Cipro, have you tried Cipro. ?
 
I have to be honest when the "Do I have ALS" posts start with a timeline that begins in 2005 and the poster appears to be in competition with Geoffrey Chaucer for word utilization I lose interest quickly. Obviously anything is possible but if 6 years later you have not progressed to the point that ALS is obvious it is highly unlikely it is ALS and considering that this disease is already an unlikely diagnosis I would say it is safe to say you do not have ALS.

Good luck to you and I hope you feel better. Please do not obsess over ALS.
 
Thank you to all you wonderful people for your responses, I appreciate your well wishes and helping me with my long line of symptoms (it was a choir just reading it, I agree).

I'm sorry to say I saw the neurologist today and she said she not only can see muscle wasting in my left leg but from the clinical exam I have brisk reflexes and weakness in my left arm and leg I have upper/lower motor neuron involvement. I am pretty scared now and I am not sure how to deal with this news. I am being setup with all sorts of tests as we speak, my insurance is starting to decline my testing which I didn't know they could do that.

MS and muscle wasting don't really go together unless you can't use your muscles. I can use my muscles and their is muscles wasting and brisk reflexes.

This is a weird form and it's been a long road for me, 6 years of symptoms that came and went, where at least 2 years of remission some how (which obviously gave me hope that is was Lyme Disease). Very strange indeed but true. Maybe because it is early onset it behaved differently. According to the stats it's 1:165,000,000 to get this disease before the age of 38 well I was 31 when they started, unlucky lottery winner I guess.

I will give you kind people my status as soon as I get more tests done, I am still hoping for the best.

You all have so much courage and are so giving, thank you again for all of your help.
 
Hope all your tests go well. It certainly would be a weird presentation for MND, so that's a big plus, pointing away from it. Hope they get some answers for you soon.
Aly
 
What has the neuro said the next step is? Have they scheduled an EMG as of yet? Have they scheduled you for any other tests or given any indication as to what is causing the muscle atrophy and brisk reflexes? Do not jump to conclusions, especially with this odd manifestation.
 
[/QUOTE]Or are you one who'd rather sit on the sidelines and snipe at the ones who are actually trying to get information across to these folks in their time of fear and need?

Time to put your money where your mouth is. What words of hope, knowledge, and wisdom do you have for this poster? Show us how it ought to be done.[/QUOTE]

TR fogey - You are the reason I put my original post. I understand how frustrating it can be to see posts of this nature but you are unnecessarily aggressive towards many people. Your post to me is a prime example of this - how dare you have the nerve to tell me that I'm sniping when I am feeling some genuine compassion for a person, whether or not they have ALS.

Moderators - I'll put my money where my mouth is as requested - feel free to remove my account from this forum. There are other sources of support for me and others out there as this one offers absolutely none, except to those that meet some deemed personal criteria that some posters choose to adopt.
 
Just because you disagree with TR doesn't mean you have to leave Becky. If you shut out everyone you disagree with, you'll soon be a very lonely lady. Don't read his posts if you don't like him. Do what you like but look into the history behind the poster and you might understand more.

AL.
 
TR fogey - You are the reason I put my original post. I understand how frustrating it can be to see posts of this nature but you are unnecessarily aggressive towards many people. Your post to me is a prime example of this - how dare you have the nerve to tell me that I'm sniping when I am feeling some genuine compassion for a person, whether or not they have ALS.

You were sniping at members here who had exercised their prerogative to comment on the original post. It takes no nerve to call you out for criticism -- I'm doing unto you what you were doing to others. If you don't like it when it's done to you, don't do it to others. I trust that is plain enough for you.

Had you expressed your compassion to the original poster without criticizing other members, you would have no quarrel from me.

Moderators - I'll put my money where my mouth is as requested - feel free to remove my account from this forum. There are other sources of support for me and others out there as this one offers absolutely none, except to those that meet some deemed personal criteria that some posters choose to adopt.

So dramatic! If you find this place doesn't meet your particular needs, simply stop visiting.

Or, you could jump in and help build the type of community that you believe it should be. Considering that you have now insulted the entirety of the membership here and the thousands of helpful and informational posts that have gone up here over the years, I imagine you have a long list of things that need to be put up here. What's stopping you?
 
Trfogey I know you are going to rake me through the coals about this post and perhaps I will deserve it. I am certainly thick skinned enough and secure enough to handle criticism and when I am not being stubborn I usually learn a thing or two from constructive criticism.

There is no disputing that you are one of the most knowledgeable members on this forum. I can also honestly say that I know you are trying to help people and frankly you do a lot of good in helping people on this forum. I will also readily admit that there are definitely times that tough love is needed with some of the "trolls" or hypochondriacs. I too find myself growing increasingly more frustrated with the people who come for advice and then refuse to listen. I think your bluntness with them is not only appropriate but most likely the smack in the face they deserve.

This part is only my opinion and I only speak for myself and obviously no one else. I know you will disagree and I respect your right to disagree and obviously differences of opinion are healthy in forums such as this. I just wish that sometimes when you respond to someone else who gives their opinion like Becky did you did not have to belittle them and mock them so much. I am not suggesting Becky is right and you are wrong, you both have differing opinions which is great. My only point here is that Becky is not a troll or crazy insisting they have a rare disease that needs a slap in the face. Everyone has the right to disagree with me you or Becky or anyone else on here when it comes to opinions. I just find no reason to attempt to humilliate and mock someone that is new and does not realize how much good you do and how often you and all of us are forced to deal with trools and loons. I am sure someone as smart as you could educate Becky or anyone else in the same position without belittling their question or opinion.

To be clear here, I am not referring to scientific or medical facts, because they are just that facts and not open to debate. I would like to reiterate you do enormous good here and as I said I am not talking about the people who need to be shoved into reality about their health.

I have probably never done this before so it is overdue. Thank you for all the good you do here and for taking the time to listen to one man's opinion.
 
My next step is EMG on Thursday and an MRA Angiogram next week. I am getting a 3T MRI tonight for head and neck to rule out other disorders. Muscle biopsy will be next week or the following week.

You guys are great, seriously thanks so much already for understanding how difficult this is. I would rather have had the fast diagnosis 5 years ago (some get faster diagnosis's than others so I could have changed my lifestyle a lot more.

Thanks again and I will be back on these boards everyday now. If I turn out (with a miracle) that I do not have this disease I am dedicating my life to fight for a cure, I can promise you that.
 
Lets see how all the tests turn out. There is a lot left to be determined. I will be praying for you that it is anything but ALS!
 
No, TedH5, I'm not going to rake you over the coals for those remarks. You've been around here long enough and seen enough that I have no reason to argue with you over matters of posting style.

What does concern me has nothing to do with you and that is how free some members feel to criticize the folks that do attempt to answer the questions in this part of the board, while doing literally nothing themselves to make sure that the questions do get answered. Obviously, that's not you, Ted -- you do help out here. Some of these "do as I say, not as I do" folks have made some very hurtful remarks and, in some cases, even opened threads where they can criticize the DIHA regulars. These actions have discouraged several people from participating more fully on the forum and attempting to ease the fears and answer the questions and correct the misinformation.

So, I've decided to challenge those who criticize without contributing -- if you don't like the way things are being done in this forum, then get off your "compassionate" behinds and start dealing with the questioners. That is what I did here and it is what I will do in the future. The days of the unanswered potshots are over.

And, obviously, that last paragraph is not directed at TedH5. He does his share of the work in DIHA and a marvelous job of it. If all the self-appointed arbiters of style around here were contributing as much as TedH5 does, there would be no need for a conversation like this.
 
This was sooo nice of you to take the time to do this for our friend here that is terrified and don't know what he has.:)
 
It took me weeks to compile those dates from when I was sick and typing across Other health (Lyme disease and other general health boards) of my symptoms and hoping it was Lyme disease at the time. ALS presents in many different ways for many different reasons that no one really knows why. I promise you I don't want this disease more than anything. Just because I can't swallow very well anymore or hold my head up, going from a healthy very active young man to getting hit with whatever I have I wish upon no one.

Thanks for understanding.
 
Hello NotKnowingSucks (kind of weird calling you that, but I can appreciate you not wanting to use your name)

I looked over your story and that is simply not the story of someone with ALS (it isn't even on the radar). You have too many sensory symptoms, symptoms coming and going over a 5 year period of time, symptoms starting in your bulbar region and limbs at the same time, etc. That is not how ALS presents itself. You say that ALS can present in a number of different ways . . . and it does. However, not in the way you have described.

I know right now you are a bit scared because of your brisk reflexes and weakness presenting in your left arm and leg. I also know the internet tells you that symptoms such as those point toward ALS (and they do) . . . but . . . given your story in its entirety, it simply does not add-up. The reflex arc in your arm could be affected by whatever the heck has invaded your body (that could explain the brisk reflexes) and certainly the weakness can be explained by those "invaders" as well. That is just one possibility of many.

Listen, for those particular symptoms to be ALS, it would have to be a HUGE coincidence that the onset of ALS and the progression of your non-ALS symptoms are occurring at the same time. Not likely at all. Calm yourself and let the docs determine what is happening to you. As of right now, I'm sure that what they have heard and seen from you doesn't have them worrying about ALS, so it shouldn't have you worrying about ALS.

I wish you the best.
 
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