please! Do not put things out of context

[mamaoftwo]

"if you are going to share your experiences with someone, make sure you have your information correct".

Well I have to agree with everyone else who responded and think Pat hit the nail on the head - the people here share their OWN experiences not information from a text book. That cannnot be misrepresented.
No-one on here has ever claimed to be a doctor far less an ALS specialist - in fact, if you look at Al's posts, he frequently states as much.
As someone else said, doctors need to pay attention to what patients say. Most of us, even those who are diagnosed are not text book cases. We do not conform to the ALS rules in any way and yet some of us have it.
I wonder do doctors ever frequent boards like this for the purposes of learning? So when the books say ALS does not cause pain, well the patients on here would tell you differently. When they say "ALS does not cause sensory issues", again I have read patients who say differently. Or "twitches in the absence of atrophy or weakness are benign" - read Mike's (quadliss) story - benign twitch was his diagnosis, 2yrs later, diagnosis of ALS.
So we never know, do we. All we can do is support each other while we go through this process of finding out what is really wrong.

 

[vmd]

janf:

As you describe your symptoms, it seems as though your fasciculations came last. Is this true? If so, it points out the diversty of chronology of the disease. Many PALS experience the fascics first, then atrophy, and then weakness. I had the weakness first, then the fascics.

 

[patricia1]

I read that Columbia University hospitsal would like als patients agree to have autopsy done Because the only way you can DX a positive ALS is by a Autopsy. So what does that say. Doctor really dont Know . So I think I would agree to do that for the sake of my family. Pat

 

[janf]

Hi Vmd Yes The First Symptons Were Foot Drop And Hand Muscle Wasting (claw Hand) If I Had Twitching I Didn't Notice And I Will Honestly Tell You My Twitching Hasn't Been Severe.

 

[vmd]

Thank you jan. Like you, I am certain I have ALS and could probably diagnose myself. I have many of the symptoms you have. The bulbar symptoms are especially bothersome.


Patricia:

I agree. ALS has so many facets, that it presents in many different ways. I read that some people think that the famous phycisist, Hawkins, may actually have been misdiagnosed with ALS, given his longevity with the illness.

 

[mamaoftwo]

I dont think Hawkins was misdiagnosed at all. Remember that the life expectancy PALS are given is if you do NOT use any assistive devices - no PEG, no vent etc. If you are prepared to do all that, I dont think there is really a limit on how long you can survive. Or am I wrong?

 

[Jamiet]

So how the hell can an ALS specalist tell me with 110% cetainty i don't have ALS.......when they don't konw what causes it, don't know how to treat it and don't know how to test for it.

 

[patricia1]

Hi guys I had the EMG and it was poss, The reason my MD wont give me a muscle biopsy is because if I had myopathy my EMG would be showing muscle not nerve problem My involves the nerves which is consistant with ALS She say my CPK would be elevated and my is Normal. So no muscle biopsey for me. I have a slow moving ALS My breathing was Normal standing and lying down aliittle below normal But have been consistant for one year and they are happy about that, They want me to use a bipap befor I need it ,because they find it keeps the breathing good longer Giving ALS patients better quality of life. I will use it at night or while lying down looking at TV She said it will make a difference. They are trying to get the insurance co to pay for a Bipap before patients have breathing issues .so keep the faith guys Pat

 

[Jamiet]

Please take a lesson from this

So, UCLA.....

I think, you've seen what actual experiences bring. While we all know you are trying to help calm people down, if you are a med student, you can perhaps spread the message of what we are telling you.

It's a sad fact, but most doctors are really disconnected? ( i guess that's the right term) from their patients and too quick to pass judgement and blame it on anxiety, blow you off, send you home to wither away.

If you are a med student, pass the message of what real suffering people go thru with doctors.

Rgds,

Jamie

 

[patricia1]

vmd I agree with you if you have bulbar symptoms Its ALS that why I always knew deep down it was ALS but the MD wouldnt say the word until I had atropy 5 years later. Pat

 

[patricia1]

I had clean ones only when there was only slurred speech Now its in my arms and the emg is poss. I would say I had about four clean ones and two bad ones.since my arms are weak and atropied. But I am lucky I am still TRUCKING after 8 years So there is always hope. pat

 

[ltr]

Pat - What your neuro told you about myopathy showing on EMG and CPK's is not always true. Like you yourself have said before, each neuro has their own theory and you have said you don't trust their knowledge. You shouldn't this time for sure. My CPK's and EMG's were clean for myopathy. MUSCLE BIOPSY IS THE CHOICE FOR DIAGNOSING MYOPATHY. All the research says this. Annmarie sent me some research today that says myopathy doesn't show up in most EMG's, moreso in the paraspinals and muscle biopsy is a necessity and the only proof of myopathy. Insist on it. What the hell skin is it off the neuro's back......it's your muscle.

 

[patricia1]

I know what you are saying but both my neuro in Philly and Robert wood Johnson in NJ said my last EMG show only nerve problem which points away from muscle myopathy.One of the neuro said "You cant go around telling MD what you want done " A muscle biopsy is very invasive and they feel stongly I have ALS I heard it from a least 4 neuros it ALS I have come to live with it. I ignore as much symptoms as I can ,and live my life to the fullest. I try to ignore my body If I listen to everything I feel or see,what goes on with my body I would go mad. If I keep busy I dont feel the twitching or the fasic But if I sit home and dwell I feel everything. So I try to keep busy. I come to terms with ALS It is what it is. Pat

 

[MtPockets]

UCLA I hope we are not homework for you

Because you focused time and again on twitches alone are not usually a symptom of ALS, you may have caused some people to decide not to further investigate their disease process.

I had twitching for 2 years before I moved on to more symptoms. Yes, it was eventually diagnosed as ALS. Most of us encourage people seeking advice to consult a neurologist who is familiar with ALS and it's progression.

I have a son who has been an ER Doctor for over 6 years and he still does not believe I have ALS because I do not fit the textbook example. My muscle biopsy as a test of last resort proved I have ALS. I was diagnosed May 11, 2006 and now have lost all leg movement and arms are going fast.

As we have learned from those here on the forum, there are hundreds of variations of this terrible disease. Rate of onset, type of onset, Bulbar vs. limb onset, and many others to numerous to mention.

You like my son have read a book, done a little research, (we have researched this every day for years and lived it), and drawn your conclusions because your were scared you "might" have ALS. I understand that and I'm glad for you that you do not have ALS.

I hope you stay around long enough to learn more by going to the "Threads" for PALS and read of their experience. Life experience is much more reliable than a text book. You might actually learn something from us patients that will help you someday. There are too many things going on to fixate on twitches.

God Bless
Capt AL

P. S. If this was for your term paper I hope you get a good grade. :roll:

 

[ltr]

Pat - that's funny, you are so right, we can't tell the docs what we want done because I actually think they become offended and then you really aren't going to get it. I wasn't aware that you had an EMG that showed nerve involvement, I thought they were all clean. That certainly changes the picture. Well, you can't ever say you didn't give it your best shot.

Capt. Al - I went to my mda clinic today to be told that I wasn't really as sick as I think I am and that I really shouldn't worry about my fasciculations even though I have weakness because clinically I can still push against my neuro's hand! Imagine that, a 15 second neuro check of "here, push your leg against my hand, here push your arm against my hand....oh, your fine"! Can you flippin believe that? Anyway, the neuro who did my biopsy said he googled his name and found the thread I posted about my biopsy that he performed. He couldn't believe it and read on! He was amazed at what he found on this forum, many, many, many atypical patient's. I don't know how long I will be able to function, but my goal is to get a book started on this and shed some light on what is going on here. I told the doc that all of them from the clinic really could learn a lot from 5 minutes of reading this forum everyday. Hopefully, they will listen someday.