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lisa1215

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Hi everyone

This is my first posting and I wanted to say hello to everyone and ask some advice to those who have been in the situation of not having a diagnosis for a long time, and if these symptoms sound like they may be ALS..

My face went numb last summer, and ever since, my lips and cheeks twitch. My lips are definitely weaker and I have caught myself drooling a couple of times. My tongue has also gone numb and I have been slurring some words on occasion.
I am having difficulty breathing and am out of breath really easy (like just talking!), my jaw muscles are also noticably weaker and tire out easily. I also have fasics in my thighs and the back of my arms.

I took all these symptoms to a neuro, the MRI came out negative. I had an NCV and EMG completed today and was stunned by the results. The needle in my back and my neck showed "denervation" and the neuro indicated it is a motor neuron involvement. The rest of the testing was abnormal as well because I have CMT (a peripheral neuropathy- I expected the dirty results from my arms and legs- NOT my back and neck..)

Anyway- I am so sorry for the long post but the neuro said today that ALS is a possibility and my brain is going to explode from data overload from the internet. He indicated I would not have a diagnosed for a while until all testing is complete..I am scheduled for a Pulmonary function test and then a follow up with the neuro.. I guess my post has two purposes..First- does this sound like possible ALS? And second, how long does a diagnosed usually take for ALS?

Thank you for listening to my rant and for any advice you may have..I feel like I have been hit by a truck and I am so incredibly frightened of my future right now..

Lisa
 

Meg1

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You probably don't know this but you have used, in the title to this post, a technical ALS term which is misleading. When an ALS diagnosis is rendered under the El Escorial criteria a patient is said to have "possible ALS," "probable ALS" or "definite ALS." (Some doctors still use a category called "suspected ALS" but I believe the criteria have been updated to eliminate this category.) At any rate, since it appears you don't have a diagnosis of "possible ALS" you'll probably want to use a different title if you post your question anywhere else.

You can read more about diagnosis criteria here:

http://www.aafp.org/afp/990315ap/1489.html

Meanwhile, you'll want to get yourself to an ALS clinic for a second opinion. General neuros, IMO, are not qualified to make an ALS diagnosis--they don't see enough of it to reliably rule out the mimics.

Good luck.
 

ltr

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Lisa,

I am so sorry for your problems and the possible diagnosis of als. I am also sorry if some members of the forum seem so insensitive and petty, most of us are here to help you with support. Was your neuro from an als or neuromuscular clinic? If not, you can go to the MDA website to find one near you. I have not been diagnosed with als, but I have had many symptoms similar to yours, even the shortness of breath when just talking. From my research, though, numbness isn't usually one of the symptoms. I pray that your next dr, visit will give some more encouraging news, but in the meantime there is plenty of help and support on this forum. I am sure others will be posting with better info. Good luck! Leslie
 

nspoc

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Hi Lisa -

I am so sorry you are facing this diagnosis. Ltr gives very good advice.

One thing I want to say is that I did not take Meg1 to be insensitive and petty. Sometimes this very technical jargon stuff has been helpful to me as I try to communicate with the professionals. For instance - I have just become familiar with the Escorial Criteria, thanks to Meg1.

I have also found ltr's posts to be compassionate and helpful.

I have been going over this site for about a month, now. I am profoundly moved by the good will, general lack of "flaming", good information and sensitivity I have found here.

I have taken to heart AL's cautions on scams, I have been impressed with the posts on equipment, the posting of pictures of renovations, etc.

I hope you will find this site as helpful as I have found it.

As for your symptoms- they are distressingly familiar, and could be a number of other conditions, in addition to ALS, such as various Palsies. Also the numbness you experience would be a little out of the ordinary for ALS. All this uncertainty is terrible, but hang in there, and consult to best ALS professionals you can find.

In addition, anxiety compounds breathing problems. I cannot think of something more anxiety-inducing than facing a possible diagnosis of ALS. At any rate, if you think anxiety plays a role - get some help for this. Anxiety is treatable, as has been pointed out by AL and many others.

Please keep us apprised of your situation - I care and wish the best for you.

Furthermore - thank you to all the forum participants - your info, kindness and high calibre of knowledge (and occasional directness) have been a great source of comfort and guidance to me.

Best to all.

Beth

PS - A lengthy diagnostic process seems to be the rule, rather than the exception, I am afraid. Nonetheless, I hope they get to the bottom of this very soon, for your sake.
 

zac111

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tell me were your ncv results motor are sensory there cant be an als diagnosed with sensory nerves in volved and ive studyied up on it and the motor nerves are usually normal to untill late in the course of the disease that being said how were your reflexes brisk,normal are decreased they also play a major part in diagnosed.
 

lisa1215

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Hi Everyone-

Thank you so much for all the replies- I have taken some comfort in knowing there is a place to go for support with some wonderful, supportive people.. I have been reading posts for a while and everyone here shows genuine concern for everyone.

I had the Dr. office make a copy of the EMG/NCV report and had a pretty hard time making heads or tails of it. The NCV showed abnormalities, but it is likely due to a peripheral neuropathy that I have. The strange thing about the reflexes is that I did not have any that could be ellicited for years..And now, since these symptoms have started in the last year, every Dr. I have seen has gotten them. Very strange, but they have returned after a long absence.

The narrative part of the report also said the Dr. was very concerned about motor neuron disease..He detected "active denervation of the thoracic and mid cervical paraspinal muscles". Not quite sure what that means but it doesn't sound good! I am 36 years old, and I have 18 month old twins and I am praying to God to give me some strength..

My neuro also indicated after my Pul Function tests that he will probably refer me to the local MDA clinic for an evaluation as well. I feel like the next steps are just to hurry up and wait now! I will be checking in regularly-thank you all again.. You are all in my prayers as well.

I also did some research on the diagnosis of ALS and I have not been given any official diagnosis (Possible, Probable etc), so I see where that confusion came from..

Lisa
 

CindyM

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Hello Lisa. Glad you found us but sorry for the reason you are here. From what I've read from the posts of others with young children, the issues of dealing with either a DX or waiting for a DX are compunded when one is trying to raise a family at the same time. Raising twins is hard enough without your body acting all weird on you!

Myself, I am one of the resident experts on how to play the waiting game. This June will be one year since my symptoms first announced themselves. Since anyhting the Docs might have to say to me at this point will most likely only be bad news, I am more than happy to just be a person who has symtoms of ALS. I don't know if this helps you in any way, but I have read that there are others who waited much longer for a DX, and there are several on this forum for whom the disease is progressing more slowly than usual.

Anyway, you are doing the right things by informing yourself. A lot of folks find it easier to keep themselves calm when they are informed, and at least one doctor has told me that it is easier to treat an informed patient who becomes a partner in his or her care. Write back when you can and tell us about the twins. I bet they cute at buttons! Cindy
 

lisa1215

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Hi Cindy

I love to talk about the twins- they are the best! Super cute, but of course I think so..They look nothing alike, act nothing alike- you would not ever think they are brothers or related for that matter. Busy age though- as much as I love them- I kinda look forward to 8pm when they go to sleep..thanks so much for asking:)

I like your attitude about your symptoms too, I kind of don't want to know just yet.. I just want to maintain my sanity and live my life as a happy person- not worried about what tomorrow will bring. I have realized what living in the moment means..I think I am as informed as I want/need to be right now.

I wish you well, you and everyone here are in my prayers..
Thanks again!

Lisa
 

CindyM

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Feel free to visit as often as you like and share whatever is on your mind. The search feature on this site is a big help too. There is almost no topic that is off-limits! I found, strange to say, that learning from others what could happen and seeing that they all cope and get on ok, settled me down a lot. Some say that doing a lot of research makes them more anxious, so I suppose it depends upon the person. I actually stopped worrying about the "what ifs" when I saw that lots of folks had crossed that bridge and even a few others and they manage quite well.

Tomorrow is supposed to be a nice day for most of the country. Hope you and those cute little kids have a chance to get out and enjoy it! Cindy
 
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