Looking for opinions

Clearwater AL

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Jac... over the past 30 years, maybe more, billions of dollars have
been poured into the research for cancer. Still rages on.

I wondered if the mega industrial medical complex works harder
on finding life saving treatments over finding the cure.

If an absolute cure for cancer was to be discovered... it would
bankrupt the cancer medical treatment centers across the country.
Oncology would take a huge financial hit.

Say some research center found the absolute cure... I wonder
what they would do with it or be let to do with it.

They cured Polio and the expensive iron lung machines and
treatment became a thing of the past... quickly. -$$$

ALS is a rare disease (maybe not so rare as it once was) but I
have a close concern with Alzheimers which is no longer
considered a rare disease. I believe the break through for
ALS will come from the huge amount of money being spent
on Alzheimers over ALS. Just recently they have announced
a blood test that can determine Alzheimers for example.

In the brain they are learning there is an interesting relationship
between ALS and Alzheimers.

Again, cure or a quality of life saving treatment? The later
would continue the money flow to the industrial medical
complex.

Just my thoughts...

Edit: Mods, after some thought about this reply maybe best
to move it to Rants and Raves being Jac pretty much signed
off for now.
 
Last edited:

Jac112276

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You have a lot of interesting points
 

Jac112276

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Has anyone ever heard of a normal EMG on arms/hands where Atrophy is noticeable to the eye? Also forgive me as I see this question a lot. I have seen stories where the EMG came up clean but at a later date the EMG came back with abnormalities. This seems to be all to common. Do you think that she is making me wait to see top ALS neurologist / nueromuscle doctor for a reason? I am truly baffled because I could have seen an ALS neurologist nuroumuscle doctor already, with in Stoney brook practice. And if my EMG was clean why have me go to the Head of ALS no less. Has anyone ever heard of this? I can tell you that my right arm from my neck to my hand is in chronic pain, shoulders wrists arm muscles have terrible aches n pains, feels like I have a constant soar wrist and shoulder/ the left arm is slowly catching up. It also felt like knives were being stabbed in my shoulders one night. I’m just so confused. No one likes waiting.
 

Jac112276

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Forgive me, I guess I just had to type it out and get it out, you’ve all kindly answered my questions. I just have to be patient
 

Jac112276

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Making progress, called stony brook turns out they only have two als neurologists in the practice, they had a cancellation I got a Feb 5th appointment. Better then April. And I’m on the cancellation list to call if anything earlier. Seeing the ms specialist Jan 12, still have more tests, Itonicly a close family friend was just diagnosed with ALS. He fell broke bones , after he healed , he couldn’t lift his arm. For a rare disease it’s starting to seem not that rare.
 

Jac112276

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I’ve been trying to search for (going through diagnosis) support group. I thought it would be healthy to join a formum for people with similar symptoms still in the diagnosis process like me. Does anyone have any idea if there is such a forum? I’m not able to find one, was wondering if anyone knows of one. Thank you again for all your kindness.
 

Nikki J

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There are undiagnosed illness groups on facebook though they are non specific

you could always start your own group there too
 

ShiftKicker

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There are a few anxiety support forums with specific subforums for health anxiety. Otherwise you may have to use FB or some other social media platform to search.

Please, no more posting here, as it is an ALS specific forum and you have been cleared by a neurologist via EMG.
 

Jac112276

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Laurie, I’m so sorry that my post offended you. I have not been cleared of anything yet. My neurologist set me up with an appointment to see an ALS nueromuscler doctor due to my shoulder hand Atrophy and tongue appearance , I didn’t post about my ongoing symptoms, was just an innocent question. Please don’t close my thread. I will not post again unless I have finding after I see the ALS specialist. AL’s post was helpful with the MS information but the thing is my MS generally does not effect the upper region in such an aggressive way. So it could be anything, thank you for all your answers. The (could i) forum can be frustrating because it’s hard to ween out hypochondriacs verse people who have valid symptoms of a potential serious diagnosis. I’m contributing 20.00 a month. I just ask you to please not close my thread, I thank you for all you do on this forum. I always said the harder the life test the more God has faith in us to get through it. Best wishes to you
 

lgelb

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I didn't express offense. If you are referring to ShiftKicker, what she is saying is that we deal with ALS here and that has been ruled out for you. MS is one of many other possibilities since "brain lesion" is a relatively vague term. But a "lesion" is generally treatable to some extent.

Threads are closed automatically after a certain time.
 

Jac112276

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Things are not looking good. I can’t lift my arms up that high, the pain from my neck all the way down to my fingers on the right. It feels like lobsters are squeezing my muscles, I often use my left hand to hold my right arm up because it’s so heavy. The Atrophy on my right shoulder is worse the bone pain and horrible aches, my left arm is catching up very quickly. The left shoulder is painted and pain In forearms and fingers. Such aches in my thumbs and wrists. My tongue looks horrendous, Two nights ago I felt the pulse of my tongue on both sides of it. I have no appetite at all food tastes gross. I’ve been eating ice cream because it brings relief to my tongue and mouth. I have a drink and it sits on the bottom of my nose and I have to clear it by using my nose and mouth. I was advices by a professional that one EMG does not clear ALS. I know I’m not suppose to post here without an indefinite diagnosis but I needed to post this. Thank you for listening
 

Jac112276

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If their is anyone that believes me, comments are welcomed but if it’s against the rules (which I believe it is) I understand completely. Thank you for reading
 

ShiftKicker

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I think the resources of the people here are tapped out which is why you are not getting the replies and feedback you desire- you must continue working with your doctors. It seems as though you need to address your fear of having ALS with your doctors as well, as the folk here don't see it and are definitely not in any position to be able to help you with diagnosis, nor provide you with continued reassurance.

At this point, it's not productive to continue soliciting replies from an ALS forum, as it is not what your issue seems to be. You asked above for advice and it was provided you- FB may have groups dedicated to undiagnosed neuro discussion, but this forum is not that place. If you do get more information from your doctors indicating ALS, that is the time to post here again.
 

Clearwater AL

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Jac, if I may take it a step further.

You have posted 25 times over three pages.... please don't post again
unless it is an EMG report with the summary/conclusion at the bottom
stating you have been diagnosed with ALS. If not... no need to post again.

Until then, if then ( a huge if )... log off from this site and search other
resources for your concerns.
 

Jac112276

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Hi, so my vitamin B12 was 307, all other 11 viles of blood work fine. My right shoulder is now bone. I cannot use arms above elbows. Have to use heating pad around shoulders and back. My tongue besides being horrific looking is swollen it burns and is hard for me to talk. Shoulders lock, very painful shoulder blade spasms, Heals on both feet hurt, have to tip toe, spine pain, knee pain, chronic wrist to elbow pain and much more. Very bad body Oder (BAD) noticed my tongue look wierd a year ago, I thought it was from medicine or biting tongue. waiting on results for spine and cervix MRI. So I know this is not a support group for diagnosis process , I see dr in two days. Can’t even really wash my hair. Heating pad works. In any event I’ll be back because, yes it appears I have ALS.
 
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