PLEASE READ: It may not be a motor neuron problem

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rose

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Many of us here on this forum are willing to spend time to squelch fears of ALS. When the worried person posts with symptoms that are not realistically related to a MND, there's not much we can say, and frustration builds for all of us.

If you do not typically lean towards the hypochondriac side, and it's just that your doctors can't find what is wrong, then, please open you mind to possibilities other than motor neuron problems.

Illnesses caused by autoimmune problems are notoriously hard to diagnose. Finding the cause if it is something in this field goes way beyond blood tests for antibodies. Endocrine and metabolic type disorders can also be present despite normal preliminary screening tests.

A tumor, located somewhere in the body can effect many of the systems of the body before ever causing a "typical" tumor symptom. All of these other areas of medical problems most definitely can cause some of the problems that overlap with neuromuscular and motor neuron conditions.

Old injuries and calcification of the vertebrae can cause weakness and other symptoms shared by ALS.

So, if you feel like I'm describing your situation, consider going back to a general practitioner and square one again. Don't ask to see a neurologist, don't try to steer your doctor's referral choices in any direction. Be honest about what is actually impacting your life without adding other symptoms which, to your horror you find "fit" once you've started internet surfing.

For those who's symptoms are likely anxiety driven, here are some links to support forums, etc.

Other than locating these web addresses, I have no real knowledge of them, and do not endorse them, or claim that this forum does. BUT, on the surface they seem like they could be very helpful for those of who continue to fear the worst, despite all the calming or reasonable words you receive from us, and your health professionals, family, etc.

Please, if you are one of these people, give the following resources a chance to help.

http://www.google.ca/search?q=hypochondriac+forum

In the past other forum members have taken the time to post links to the Benign fasciculation syndrome (BFS) forums, but I don't really know if those that could have benefited from these sites actually were receptive to the idea, because they, in their minds, had something other than BFS whether or not it was the case. But, if you've been told by a doctor that you have, or most likely have BFS, then please look into a support forum, I'm sure you will find others there who have had the same experiences, fears and frustrations that you have had.
 
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TedH5

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Re: Support forums

Rose great post. It should probably be saved as a sticky. You obviously put a lot of time and energy into the thread. Hopefully this will help the numerous people who suffer from anxiety and do not know where to turn. You are a wonderful lady Rose!
 

Al

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Re: Support forums

It is a sticky now, but will they read it? Let's hope they do.

AL.
 

joelc

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Re: Support forums

I had also added it to the sticky that is already there. It is #11
 

trfogey

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Re: Support forums

Nice work, rose. A few will read it and follow its good advice, but they are the ones that came here to listen. Unfortunately, the ones who should be reading it and following its advice won't read it because it tells them things they don't want to hear.
 

alex scared

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Re: Support forums

rose . . Your posts are always so well put together. . . Thoughtful helpful yet have a point to them that you never fail to qualify . . I guess i am one of the people you mention . . Unlikely mnd/als but with symptoms that trouble me but your thoughtfullness (ie. . Getting planning guy to contact me ) is so appreciated. . Thanks for posting the links . God bless . . Alex
 

GlenBrittle

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Re: Support forums

Rose, that was a very intuitive post. Every one should read it.

Bravo I say, Bravo
 

timesup

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Re: Support forums

Rose
thank you for the post- i will look into all of the places you have suggested-
Please understand (and when i say that i mean all of you that have posted) as well as others who think they are wasting their time on us who have questions without answers
I agree most definitely to not try to lead your GP in any direction as i have learned the hard way-that being said it has been since 2006 that i have had severe pain and had numbness as well as the twitching -no neurologist or GP was able to figure out what was goin on-they wanted to put me on Cymbalta for pain- sorry i try not to do drugs as i am a pilot and peoples lives depend on me-fast forward to 2008 which is when i joined this forum- still no diagnosis -pain isnt as bad but still there and im not as strong as i was- fast forward to today- have totaly quit working out- pain is back without anytype of exercise and still my GP thinks aww no nothing wrong with you- excuse me but i had to make my own dr appointments with speacislists to try and figure out what the hell is goin on- now Wright and Aly have been VERY helpful- still -i was just diagnosed with TOS/Brachial plexus issues as well as shoulder girdle issues as well as my foot and now leg pain which ive been telling my GP that it doesnt look right and he has passed me off since 2008- i was just diagnosed with Neuropathy of the foot arch as i have lost muscle- now they dont say from what but we are hopin (Wright and Aly) that its just from a non detected issue via MRI of the left side of my spine or piriformis muscle or hip or? anyway my point is- that a persons physical and MENTAL well being is only as good as their doctors and if they are incompetent then the outcome for the patient is one of wonder and bewilderment and then the anxiety comes into play as there are no definite answers- so before burning people at the stake for insecurities and anxieties perhaps you all should consider what type of care a person has received as it is not all equal in our nation let alone our world-I can hardly wait for OBAMA care)- I pay high premiums for what i get and i still get crap for healthcare
D
 

sadandconfused

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Re: Support forums

Hello,

I am new to the forum and I am looking to talk to people. I found out about 2 weeks ago my mom has als. I think I'm still in denial and I am having a hard time with this.
I'm very sorry to everyone who has this disease. My mom is looking to go to Germany for stem cell treatment next month and I pray it goes well. But I do have a question and I hope someone can help me. My mom told me she has a white tongue and brown urine on and off and I have looked up everything about ALS and never came across that.
I asked if she had a second opinion and she said she had a full physical and muscle biopsy, emg, nerve tests, blood work and says she has learned to accept it. I can't and I need to know what to do. I'm trying to be strong for my dad and my daughters and my mom but inside I am dying holding this in.
Thanks for letting me vent
 

timesup

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Re: Support forums

Sadandconfused
i am so sorry- my father passed away from als in 2003 and it was hell then and still is hell whenever i think of it -i believe you want to post this question somewhere else in the support forum not on a sticky= look for Wright-saddimae-abbaschild-alyoop-Al-trfogey- just to mention a few verysupportive people here _PM them and they will answer-or start a new post-that way they can notice you-
 

Zaphoon

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Re: Support forums

Rose,

I, for one, have read and received your suggestions in this thread! I regret to inform you that I will not follow your very good ideas as I have already self-diagnosed myself with a TTD (terminal twitching disorder). I'm resolved to twitch until the day I die and there is nothing anyone can do about it! I'm certain that others will follow my leading.

Thank you for taking the time to post such helpful advice. Were I a sensible person, I'd probably at least give your suggestions a go.

I'm off to wallow in my pool of self-pity. Please feel free to feel sorry for me.

Thanks for sharing your wonderful ideas that would probably bring relief to my high anxiety, were I to follow them through. (insert a big sniffle here...)
 

rose

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PS. Timesup, I can completely relate to what you're saying. It is important to have competent doctors. Unless a person has gone down the road of Long Search, No Answers, they may not understand how frustrating, and time consuming it can be. It seems like we are an instant answer society. It was truly amazing to me that it was as hard as it was.
 
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foxa

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I am new to this site and hope that my question does not seem silly to any of you but I am having a follow up with a neuroloorgist on Monday and I am scared that I likely have ALS. My symptoms are, gummy speach that becomes physically painful, very tweeky forearms and byceps, and atrophied neck muscels that do not let me lift my head from the pillow(no pain). My arms and legs seem to working just fine(went for a shot run yesterday). During my first meeting with the neurologist I was told that my reflexes seemed 'a bit hyper' (or words to that effect) The stress of this situation is causing my wife and I a lot of torment. Your comments would be appreciated.

Thanks,

Alan
 

trfogey

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Hi, Alan.

Welcome to the site.

If you put this information into a new post in this particular part of the board, you'll be much more likely to get an answer to your questions. To start a new thread, go up to the top of this page and left-click on the blue Do I Have ALS? Then click the New Thread button at the top of the next page.

Thanks.
 

foxa

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Thanks for the tip.
 
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