Old 03-08-2016, 03:38 PM #1
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Default Time for me to write again

I tried taking your advice. And I did for awhile. Stayed off the site and lived my life. I got engaged to my beautiful gf who has been my side through this whole ordeal since last March. Through all of the doctors visits, to looking at my twitches all over my body, to being there when my EMG's were "clean" (or whatever that means).

I am back because I have something to say. The PALS and CALS help so much and I truly value your opinions, but when you tell someone that "No way you have ALS, no chance, you gotta move on" - and then they come back and say they have been diagnosed - does that change your thought process at all?

A good friend of mine went to college with Pat Quinn - one of the founders of the Ice Bucket Challenge. This guy (God Bless Him) had 5 EMG's and was told he "Fine" by what they say are the best doctors in the world in NYC. Had to go all the way to Johns Hopkins to get diagnoses with ALS. They just kept telling him he was fine because he was young. Obviously he wasn't. He said he knew all along he had it. Once he lost his hands he knew. Even if the machine couldn't "find it".

So I sit here as a 31 year old and just read a guy named Corwin's threads from the past. Everyone told him no on this site and now it looks like he has it. 5 EMG's all clear and now he has it. This just always brings me back to square one again.

I can barely type because my right hand is so weak. I continually have to use the backspace button b/c my fingers aren't cooperating. My wrist is weakening as my right arm feels like its hanging to the floor. My writing is a disgrace. I work behind a desk so every time I pick up a pen or an envelope opener I have to contort my hand a certain way just so I can do it. My left hand is catching up as those fingers are losing strength. My legs have had the stiffness, achy, crampy feelings since about last April. I cannot run. My feet have felt like bricks My feet all the way up to my legs and up to my arms and down my hands is twitching like crazy. The left side of my left hand is the new popular spot for twitching. Right below my pinky all the way down to wrist twitches all the time. And I keep reading people tell DIHALS that if you twitch with no weakness you are fine. But when you are twitching with weakness - then there is an issue. Well I've had this issue for way too long now. My breathing is brutal - my sleep test came and gone with Pulmo stating she wants me to do another with a Bipap - which from what I read is what PALS use for their breathing? I wake up in middle of night 5 or more so times daily - just can't sleep through the night. Wake up gasping for air. I know this isn't normal. I get food stuck in throat all the time, clear my throat all the time, and can not speak without slurring. Scratchy, hoarse voice. Of course I'm the only one that hears it so far, but I feel it every time I speak. I feel like I'm not too far away from this being noticeable to everyone I speak to.

I am petrified to say the least. Symptoms in hands, legs, breathing, and speaking. I feel that's every major category. Every time I try to believe a doctor and all of you, I just think about Pat Quinn who is young like me or someone like Corwin who has had 5 EMG's. I've been lurking here for months trying to read that my symptoms are different from the PALS but I just feel like I know something is wrong. I have had no improvement in over a year and I read how long these diagnoses take - my neuro who I liked recently told me "I might be in for a long diagnostic process" - whatever that means. Same guy who told me my clinical and EMG were superb in September. I guess you never really know with these tests. He keeps holding off an another EMG because he wants to see if anything changes. Told me and my gf that these tests change - but everything on this site seems to say that this test would show months in advance. Well it's been a year and the waiting continues...

Sorry for the long write-up but would value anyone's input...Thank you - you all remain in my prayers!!!
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Old 03-08-2016, 04:03 PM #2
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Default Re: Time for me to write again

How is your b12? Believe last we heard the neuro was going to reevaluate you after the level was up to normal? Has that happened?

Corwin by his report is currently undiagnosed. No one knows how his story will play out. Looking at his previous posts he did have some abnormailities on at least one EMG that he reported here

I do not know Pat's road to diagnosis I do find sometimes the story can vary from the original after it has been retold a couple of times. Maybe the doctors did tell him he was fine I do not know

There are certainly people who end up with an ALS diagnosis who had an ok EMG at first. The people whose stories I have heard first hand though were not told by their neuro that they were fine. They had abnormal clinical exams demonstrating umn disease or some other physical finding that made the neuro follow them closely. Anyone with ALS who had a preliminary diagnosis of PLS first had an ok EMG- until they did not.

If a clinical exam is fine, without umn findings or weakness and your emg is fine then the person should consider themselves cleared. If not then there may indeed be a long process. I know a couple of people who have been followed for several years without a diagnosis. Limbo is a tough place but it does not always or even usually end with ALS. I don't know where you fall in the fine to worrisome exam continuum. Continue to work with a neuro you trust
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Old 03-08-2016, 07:13 PM #3
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Default Re: Time for me to write again

Riggz, congratulations on getting engaged.
I won't talk about Pat Quinn or Corwin since anything we say would be second-hand.
You bring up good points on the other things.
The BiPap shouldn't worry you at all. People get BiPap for many reasons.
Yes, there can be ALS rarities, like wrong EMGs, I suppose. They make the news in our community.
Now it seems you’re making an emotional journey: From a respected neurologist telling you there was no way you could have ALS, to now being told you’re in for a long diagnostic process. Diagnostic of what? Limbo sucks. What to do about that? I want to help you, I hope, with a bit of perspective, since I've been on this roller coaster for awhile.

Not too long ago my tongue had sores that wouldn't heal and no one could fix them. I was certain I had tongue cancer, a rapidly fatal kind. I burst into tears in a public restaurant when I thought of my kids losing their last parent. A week later the cancer doc looked into my mouth and just laughed it off. Since then, my tongue has healed. It just took a terribly long time to do so.

When my wife was diagnosed with ALS, I found myself in a year-long intensive course in both living and dying.

Yes, you need to fix that arm and especially that breathing. You're doing the right thing by seeing the best doctors. How about the other days, when you're not seeing the doctor? What do you want to do and what do you want to think on the days that you don't have medical appointments? You could come here, you could research death, you could arrange your funeral. But I would suggest focusing on enjoying life with that gf of yours, instead of worrying.

So now let's imagine the worst case. If, one day, you discovered you had an incurable fatal disease, what would you do? Answer: There's nothing you can do about it. You would, I hope, enjoy each day you have remaining and treat any new problem as it comes.

What if it's the best case? If a doctor fixes you tomorrow, what would you do? Answer: Enjoy each day you have remaining. Pretty much the same thing.

After my wife died, I realized what had I learned about living was deceptively simple, but important. Now, each day, I wake up. First, I thank God I'm on this side of the dirt. Then I take stock of myself--what works well and what aches badly. Then I plan my day and enjoy it. Enjoy it.

I'm sixty years old and that's the smartest thing I've learned. Enjoy each day.
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Old 03-09-2016, 08:52 AM #4
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Default Re: Time for me to write again

To Nikki and Mike,

Those were two of the best posts I've ever read on this site - and I truly appreciate you taking the time to go into detail and to help me try and cope with the issues at hand. I will continue working with the neuro that I trust. I will push for another EMG and will continue keeping tabs on my symptoms so I can present them on my next follow-up. I am still getting B12 shots with no improvement - stopped taking my Vitamin D pills awhile back - maybe I should get back on them? My level at first Blood tests was B12 (250) and Vit D (16). Both considered low. I feel like I read people writing bout this being low all the time on this site. Could those deficiencies really do this to me? Make my hands this weak and make me slur words? Please enlighten...

And Mike, you are totally right. I try my very best to live my life to the fullest. We have picked our wedding venue and are in contact with our families making all the preparations for a beautiful wedding next Summer.

I will leave it at this - the last thread I posted a month ago - Nikki told me a lot of what I described didn't sound like ALS and Mike told me to leave the site because no way I have ALS. After both of you took your time to reach out to me again by posting, has your opinion changed? Do all my symptoms add up to something I should worry about? Your posts were beautifully written but I didn't fully grasp your outlook on my symptoms?

I will live my life - I promise. Look forward to your responses again.
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Old 03-09-2016, 09:10 AM #5
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Default Re: Time for me to write again

You need to have your d and your b12 up to normal and the d should probably be a good bit above normal. Both of those deficiencies can cause significant neurological issues. We had someone a while back whose sop had devastating symptoms. He was convinced she had ALS. She had her d replaced and got better. D is also felt to be neuroprotective. The deficiency itself is common especially among those of us who live in Northern climes. The fact that you are deficient should not be worrisome at all as a sign of something "bad". I was deficient when I was well and was taking enough supplements to keep me just in normal range. My neuro wanted that level higher so I am now around 50

You still describe things that do not really sound like ALS to me. However you need to work with your neuro who sees you and is a specialist in the area. He sounds sensible. He told you to replace your b12 ( and d?) and then reevaluate. I still hope to see you come back and tell us another answer was found. You are very smart to plan on living your life. Too often people go into a holding pattern and whatever happens you never get those days back
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Old 03-09-2016, 09:52 AM #6
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Default Re: Time for me to write again

Riggzy I really don't want to comment on whether I think you could have ALS or not. I don't know.

I just wanted to say hang in there, concentrate on your upcoming wedding and I look forward to positive answers for you.
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Old 03-09-2016, 10:22 AM #7
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Default Re: Time for me to write again

Ditto what Nikki and the Queen said.
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Old 03-09-2016, 06:05 PM #8
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Default Re: Time for me to write again

Hi, I just read my name ...
Just to be clear - I have no deff. dx of ALS - just the MND say - Hmmmm i cannot explain everything that happend to you with nothing else....
I have tongue atrophy but no fasciculations.. And 24/7 constant tongue tingling and burning which is very odd, because it`s sensory..
Maybe it is MS - but no lessions on MRI and it`s bilateral - so also hard for MS.
My vit D was low, i have somehow poss. Lyme test, iron is low ( it wasn`t 2 months before) dry eyes, dry month...
The thing that i have learned is to live It`s so hard to understand this so easy lesson.... We all make plans, we think that we will live till 100, we EXPECT it, but life is something totally diff.....
So good luck to you good luck to me( My story is very close ot Jellis86 so i`m not so optimistic but who knows...)
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Old 03-11-2016, 12:37 AM #9
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Default Re: Time for me to write again

If your pulmo wants you on a BiPAP, you're probably stressing your body every sleep period with inadequate gas exchange. Get retested if needed and get one. You may be surprised at what happens next.

And Nikki et.al. are right to note that vitamin D and B12 are both potential actors in your symptoms. If you take B12, I would take a balanced B complex as well, just 100% of everything, not more.

Best,
Laurie

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Old 03-21-2016, 02:51 PM #10
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Default Re: Time for me to write again

Thank you all for the recent posts. I'm doing my best to live my life - just had my brother's bachelor party and have been doing some heavy duty wedding planning. I just can't seem to stop slurring my words and having my tongue all discombobulated as I talk. Nobody seems to say anything YET but no question it's there and no question it gets scarier everyday.
Was wondering this...Nikki says people talk of having weakness in the extremities due to vitamin deficiencies and have come back and said that they have gotten better by raising their vitamin levels to normal. What I wanna know - do people ever talk about slurring their words and have come back and say that the issue is behind them and their speech is back to normal? Does vitamin deficiency do that also? I keep praying at night and hoping to wake up and it will all be over. It just hasn't happened yet and I guess it is truly getting worse. The slurring, with the throat clearing, and hoarse voice, added with all the limb weakness and breathing issues just has me scared. Thank you for all your kind words and guidance. I look forward to anyone who has the time to answer my thread.
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Old 04-14-2016, 11:56 AM #11
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Default Back with EMG results

Please help me go through this. Had my EMG on 3/25/16 at Mount Sinai Medical Center in NYC. Doctor read my past EMG's and sent me on to the diagnostic room where Neurology residents perform EMG's on patients with the guidance of a doctor. The first part of the test - the NCS - the resident did on his own and left mid-test to get an instructor. I thought it was weird when he left so I obviously I was worried. He came to tell me that something was fishy with the results he was getting from my right (strong hand) wrist. (In my head, I was like I wonder if this is why my right hand is so weak and is giving me issues. The test went on and he assured me it was OK and then the doctor did the EMG.

The Findings of the NCS and EMG are as follows:
The motor nerve conduction studies of the right median nerve reveals a compound muscle action potential (CMAP) amplitude that is 49% of the left median nerve, a normal distal latency, and a normal conduction velocity. A well delineated CMAP was recorded over the APB after stimulation of the ulnar nerve at the wrist. Concentric needle EMG reveals a normal study in select muscles of right upper and lower extremity. There was no evidence of chronic or active neurogenic changes.

Impression:
In summary, the electrodiagnostic test results are essentially normal. There is an asymmetry in the CMAP amplitude of the right median nerve when compared to the left median nerve, however, there were no active or chronic neurogenic changes of the EMG needle portion of the test. This most likely represents a significant contribution from the ulnar nerve in terms of thenar muscle innervation, which is a normal variant.

I ask for whoever reads this to please let me know if you think the "thenar muscle innervation" is a contributor to my right hand weakness and what you think can be done. The only thing the doctor said to me is that the test is normal but that I get extra innervation into the thumb muscles by the median and ulnar nerve. She said its a "normal anatomic variant". I do not know what that means and I obviously don't feel normal. My right hand is weak along with all of the other issues that I've posted about in previous threads. I continue living my life like you all have told me to do - but would love some input on my most recent EMG findings. Is any of that asymmetry in the wrists the part of this disease?

Thank you all and you all continue to be in my prayers - and one last FYI - I will begin full-blow CPAP at my home for minor sleep apnea- Laurie told me it might help - hoping so. Thank you all again for reading.
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Old 04-14-2016, 03:17 PM #12
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Default Re: Time for me to write again

Hi congratulations on a normal test. This it seems that your EMG was completely normal with nothing unusual and this is the part that matters in ALS anyway. Your nerve conduction which is usually normal in ALS was the thing that showed a slight difference from average but was interpreted as a normal anatomic variation which means that there was nothing bad but just your wiring is slightly different in that nerve area than most. Lots of people have harmless variations in anatomy and it means nothing- like having appendix on the left instead of right or something
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Old 05-13-2016, 06:09 PM #13
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Default Re: Time for me to write again

Riggs, per your request I briefly skimmed your posts which have been previously answered by some of the forums most knowledgeable & valuable members. While living your worst nightmare they've graciously offered you their time & advice, which, it appears, you've been unable to take to heart for any length of time.

I do not know what is causing your symptoms as it seems (for now at least) they lack a solid, clinical basis. That's not to say you're not experiencing pain, discomfort, weakness, etc., but absent a medical explanation the next avenue you should pursue is one relating to your mental health. It is just as important, if not more so, than your physical health.

You do not have ALS and you are not at risk developing it in the future. I'm NOT a doctor and this is NOT medical advice, but the fact you're still here despite having been cleared of ALS by multiple neurologists tells me there is a mental health component fiercely at work here. Even more telling is your lack of self awareness and inability to move past the reality that you don't have a terminal illness. This one quote from you is very telling:

"Every time I try to believe a doctor and all of you, I just think about Pat Quinn who is young like me or someone like Corwin who has had 5 EMG's. I've been lurking here for months trying to read that my symptoms are different from the PALS but I just feel like I know something is wrong."


I absolutely believe your suffering is real, but it's absolutely not normal to continue pursuing a fatal diagnosis thats been eliminated from the pool of possibilities. The normal response is one of elation and one where you can't get off this forum fast enough. You are wasting precious years chasing a dragon and you will never get them back.

Health anxiety is very real, it can be painfully debilitating and utterly devastating, not only to your life but to the lives of those who care about you. It is no joke. I will say again I don't know what's causing your symptoms but it's not ALS, and regardless of what eventually turns up it will not hurt to see a mental health provider in the interim. At a minimum, a counselor can provide you with coping skills on how to better handle your symptoms, as well as how to manage the anxiety that comes from not knowing the reason for them, as you continue pursuing a clinical diagnosis.

Last edited by Lixen : 05-13-2016 at 06:17 PM
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Old 05-13-2016, 06:17 PM #14
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Default Re: Time for me to write again

Well put Lixen.
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Old 05-23-2016, 12:01 PM #15
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Default Re: Time for me to write again

Well thank you for taking the time Lixen. I try to believe everyone on this site - have left the site for weeks on end and come back because the weakness just doesn't end - and am hoping some of the knowledgeable users can help me b/c that's what they are here for. I do not troll the site to offend anyone. I am just just trying to learn as much as I can and relate the answers I get to the problems that I have. My symptoms do lack a clinical basis - as you said - which is why nobody has found the problem with me. But every day is worse. I have a right hand that is no longer cooperating with me. My index finger on this hand is just not doing what it is supposed to do. It has severely affected the way I type as now I need my left hand to do most of the typing. Affects how I use toilet paper and brush my teeth and so on. My right arm just hangs and my left hand is catching up quick also ;(

And my legs? Well where do I start? They are heavy, painful, stiff, crampy, off-balance, weak, and overall brutal. Half the helpers on here say that stiffness and pain mean nothing and others say it does. And remember - I am not in the early symptoms stage anymore. This is over a year. So how are legs supposed to feel now is what I'm asking? Does them aching and feeling stiff every day mean something? Feeling like you ran 10 miles when you didn't run one step. I was a big-time athlete and can no longer run - how is this normal? I am a man (we are allowed to go to the bathroom standing up [sorry to be gross] - did anyone ever find themselves sitting down to pee because I do it every time now? I just feel like my brain is telling me to sit down. My legs hurt that much and are that weak AND continue to twitch.

And my continued breathing/slurring/swallowing issue. I am on bipap at night. Hasn't done a thing yet as I wake up countless times a night. BIG issue I'm having now is that I am out of breath after I eat a few bites of food. Can anyone relate to that? Also, I doze off so easily and wake up and hear a humming sound coming from my mouth. I've read on this site that that isn't normal but still no sign of anything wrong with me. It's like a wheezing from the mouth but not actual wheezing - very scary. Still clearing my throat a lot and have lost my once strong deep voice. AND finally - another issue I encounter on the daily is hiccups. I've read stuff on that being bad as well. I remind everyone that I am no longer an onset person - this has been an over a year battle. Are hiccups everytime I drink something another bad sign?

Please advise - all help is truly beneficial as I am still working with the doctor who told me at first 'NO WAY" but as of recently could be in "for a long diagnostic process".

Still praying for all - please pray for me.
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