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skipper66

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Sorry for all your frustration Luke. Wish I could help. But, unfortunately I don't have any answers for you.
 

gooseberry

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Luke, I know several have suggested you go celebrate and live but you seem reluctant. You say you dont need therapy and you are active. But here is the thing, once diagnosis happens, most pals and cals take meds for anxiety and many get counseling. So what if you start a little early......it can only help. If this does turn out out to be als or another health condition, you must deal with your anxiety and stress it is causing you. The fact you are still so active means it probably isnt at this point. You say no one has to answer but pals and cals try so to help others. Please get help for your anxiety and stress. It will be beneficial. In the meantime, enjoy doing everything you can and stop perseverating on what MAY be happening. It will only may you crazy...cou seling will help you with this!
 

MaxEidswick

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> In the meantime, enjoy doing everything you can and stop perseverating on what MAY be happening. It will only may you crazy...cou seling will help you with this!

Ditto that!
 

Panos1978

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Hi Luke,

I am reading your posts with great interest as i am also having twitching in several parts of my body over the past 12 months and we are in the same age group.
I had many EMGs - it is quite easy and not so expensive in my country - and basically everyone told me that there was nothing to worry about.
During the first period 1 or 2 EMGs just found fibs on my left bicep and deltoid which was consistent with a mild radiculopathy on left C5-C6 which is present in the MRI.
Strangely none of the other doctors and EMGs during the last 12 months found any fibs on the left arm again...
What i want to say is don't stuck too much with one doctor's EMG. They can get confused especially if they are not so experienced and "name" fibrillation a voluntary motor action which was done because you haven't fully relaxed that muscle.
It happened to me several times. When i heard noises during the EMGs i was always asking if that was spontaneous activity... they said no... its because my muscle wasn't relaxed.. But my panic was always there. What if this doctor is not sure and just wants to make me feel better...? So i went for the next EMG... Again and again and again and here i am now 12 months later in the same exactly condition physically but much much worse and tired mentally.

I suggest you go privately and try and have another EMG with a good neurologist. I know its impossible to wait for 6 months...and also have you ever had an MRI of your spine?
English is not my main language so i hope you understood what i wanted to say.
 

Dusty7

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Luke said, "...I haven't heard/read about a single person who has similar symptoms to me." That might be an indication of something, Luke.

As I recall, your first (?) neuro at Baylor wanted to repeat the EMG in 3 months. Apell said no to an EMG, but maybe the other neuro will do one. And she had her two diagnoses ready if the EMG was better or worse.
 

MaxEidswick

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>Apell said no to an EMG

I wonder why? He was very definitive w/me before the emg ...

------- snip

Stanley H. Appel, M.D. is the Peggy and Gary Edwards Distinguished Endowed Chair for the Treatment and Research of ALS, Department of Neurology, Neurological Institute, The Methodist Hospital and Professor of Neurology at Weill Medical College of Cornell University. He was previously Chair of the Department of Neurology at Baylor College of Medicine as well as Chief of the Neurology division and the James B. Duke Professor of Medicine at Duke University Medical Center, North Carolina. Dr. Appel is a native of Massachusetts and received his Bachelor Degree at Harvard University and his Medical Degree from Columbia College of Physicians and Surgeons. He is Director of the MDA/ALS Research and Clinical Center at the Houston Methodist Neurological Institute, and past Director of a National Institute of Aging Alzheimer’s Disease Research Center.


Dr. Appel is a member of numerous professional societies and committees, and is the author of 15 published books and over 350 articles on topics such as ALS, neuromuscular disease, Alzheimer’s Disease, and Parkinson’s Disease. He has received a number of awards for his accomplishments in Neurology and Biochemistry, including the Gold Medal Award in 1997 from Columbia College of Physicians and Surgeons for “Distinguished Achievements in Medicine”, the Sheila Essey Award in 2003 from the American Academy of Neurology for “outstanding research in Amyotrophic Lateral Sclerosis”, Elected Fellow of the American Association for the Advancement of Science in recognition of the “dedication and commitment to advancing science and serving society” in 2003, Baylor College of Medicine Alumni Association Distinguished Faculty Award in 2004, MDA’s Wings Over Wall Street Diamond Award in 2004, Texas Neurological Society Lifetime Achievement Award in 2005 and the Forbes Norris Award for “compassion and love for humanity in research and treatment in patients with ALS” from the International Alliance of ALS/MND Associations in 2005, and the Museum District Business Alliance Award in recognition of his commitment to research, patient care, and education, 2007, and the recipient of the Houston Academy of Medicine 2008 John P. McGovern Compleat Physician Award. He is also named 2008 Best of the Best Physicians by the Medical Journal Houston.
 

Panos1978

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Hi again Luke... Just read your previous posts and i think you really over-react.
Your MRI showed stenosis and problems on the exact side where you had the atrophy and mild weakness...Exactly the same area where the EMG showed abnormal findings.
So i don't get it. Why are you questioning the MRI findings? Simply because a neurosurgeon said that you don't need operation?
Did you show the MRI to Dr. Appel?
Did you have any more symptoms during the last few months? Is the strength still the same?
Have you measured again your two arms to see if the size difference is still the same?
And finally.
You went to Dr Appel and he simply released you without making no tests and exams...?
He told you that you might have ALS but you still don't fit the criteria SIMPLY based on an EMG which showed moderate denervation in the area that the MRI also showed abnormalities...?
Very strange. I think you must work on your anxiety because messages like yours are really putting under more stress and pressure to people who are facing similar fears and concerns like yours (including myself).
Please try to relax and hear what Dr. Appel really said and not what your fear or anxiety made you hear.
I really hope that your alarm is false and you will get out of this situation pretty soon. Please keep us updated and be strong!
 

LukeL

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My MRI disc was available to Dr. Appel. I have no idea if he actually viewed it. The resident read the findings to him while I was in the room. Could my symptoms be a result of something wrong with my neck? Definitely. But I feel it is unlikely because they have not stabilized, and I have virtually no pain. I have a few degenerative discs in my lower back, and when I aggravate them, a little anti-inflammatory action and time is all I need for the symptoms to dissipate. It has now been three months since my first symptom and there has been no stabilization or improvement. Hence, my fears.

And, yes, my symptoms have progressed slightly over the last two months. I have begun cramping in my upper body, which has never happened to me before. My fasciculations have spread and have continued unabated in my upper arms and chest...triceps/biceps and chest go non-stop 24/7. Hands, forearms, abs, butt, thighs, calves, feet, etc. all twitch but just not continuously. Atrophy has not progressed and strength remains the same.

Dr. Appel conducted a basic neuro exam on me and found brisk reflexes throughout my body (which he openly admitted is common in young athletic individuals and doesn't necessarily hold any diagnostic weight). He noted fasciculations, induced cramping (in both biceps) when pulling on my arms during the exam and found my strength to be 4+ to 5+ in all muscles tested. After that, he basically said you don't need to diagnostic criteria for ALS. He said it could be, but he can't diagnose me at this point. He offered no referral for physical therapy and did not order any additional imaging in an attempt to determine what is actually going on. Again, the reason I remain fearful.
 

Atsugi

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One of the leading ALS diagnosticians in the f***g WORLD said you don't have ALS, and you're still making excuses!
Sorry you have some unknown problem, but I also think you're a f***g idiot.
Go find someone else who can diagnose your something-or-other-that-isn't-ALS.
Good luck and good bye.
 

LukeL

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Wow. My previous post was just intended to answer Panos' questions. And I definitely not a f$&@$ idiot. I just want to know what's wrong with me.

I'm not saying I have ALS. And, yes, Dr. Appel said I don't have ALS right now. For that I am very grateful. He also said could it become ALS? Yes. So before you haul off and call me names, you might want understand what you're criticizing. I'm not making excuses for anything.
 

LukeL

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Best wishes to everyone. Seems like my update has been misconstrued, and I am being criticized for my concerns. Not something I need right now. I'll just spend time with my family and friends; confiding in them, if necessary. I appreciate everyone who has offered helpful opinions. I know it isn't always easy for PALS to find the energy to help allay a young man's fears. It is truly appreciated :)

Goodbye and God Bless
 

azgirl

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Luke, I don't think you're an idiot, just scared. Any of us here would be jumping up and down celebrating if Appel said no to als, that's all. Even if it was only for a few months. I'd enjoy every moment of the next 6 months and go back and see what he says. There's probably nothing else to explore until then.

Good luck to you, hope you never join us.
-kay
 

MaxEidswick

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>Default Re: Update after appointment with Dr. Appel
Luke, I don't think you're an idiot, just scared. Any of us here would be jumping up and down celebrating if Appel said no to als, that's all. Even if it was only for a few months. I'd enjoy every moment of the next 6 months and go back and see what he says. There's probably nothing else to explore until then.

Good luck to you, hope you never join us.



Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum. Stop being lazy and expecting people with limited abilities or time to give you answers to questions that have already been answered.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practitioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...
 

Suzannah

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Hi Luke,

I've been checking the boards the last couple of days, waiting to see what the outcome of your visit was.

I've been curious about your case, because we have some similarities. I'm also a mid-30s athlete, and I went through the 3-day evaluation a few months ago after an agonizing 3-month long wait. I knew I likely didn't have ALS (I didn't) but was fairly certain I had an upper motor neuron disorder (I do).

I know for me, I would have felt absolutely sick to have waited that long for an appointment and then been dismissed so quickly without further tests. Regardless of what was/was not diagnostically warranted, I can totally understand how hard that must have been for you. I just wanted to acknowledge that.

I hope you eventually find some answers.

--Suzannah
 

Kosmoskatten

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I have already answered you in your previous thread, but I am going to reply once more.

I do understand Luke, that you want to get diagnosed and know what your medical issues stem from.

But this is a forum for motor neuron disorders (ALS, PLS, PMA etc), not a forum for other neurological issues. There have been people here who later got diagnosed with Parkinsons, Multiple Sclerosis, Cancer, severe Lyme etc. None of these illnesses are easy to live with, and you need support from people whom also suffer from them. There are forums for these illnesses as well.

You have however visited Dr Apell, and he has told you that you do not have ALS, he has also NOT pointed towards another form of MND. (Possible diagnostic criterias met etc).

That means, this forum is not for you. And hopefully it never will be.

I believe the members of this forum have given you all the help they can, and it is time for you to log off. Best of luck!
 
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