Old 09-28-2016, 03:43 PM #1 (permalink)
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So I have stayed away from here for awhile. I've glanced here and there but primarily have stayed away. The only thing that has kept me positive whatsoever are the responses I've gotten on here and the doctors telling me its not ALS. Every doctor that has told me no, I have left there happy and positive - but than a few days go by and as the weaknesses keep piling up - I get very nervous about my situation.

Just knowing how long it takes people to get diagnosed is always in the back of my mind. I hate to keep referencing other people - but it seems that so many people take awhile to be diagnosed. Took 2 years for Pat Quinn who is a year or two older than me. Lots of EMG's from NYC doctors (where they are supposed to be the best) - but nothing got confirmed for him until he went to Johns Hopkins to an official ALS clinic. Is that what I truly need to do? The neuromuscular doctor who I liked the most is officially stumped with me. He tells me no ALS and had me to go to a psychologist for therapy. But my weakness continues and I will outline them below as to where its the worst...

BREATHING/BULBAR ISSUES: I sleep at night and wake up numerous time to breathing complications. My mouth will be closed but myself and my fiance can hear this awful humming sound coming out my throat. I've read about this on here about being ALS-related so it's scary to say the least. I sit at my desk at work with bouts of not being able to breathe out of nowhere. I have been clearing my throat almost daily for over a year. My deep voice is cracked and strained for over a year. And the tripping over words continues.

HANDS/ARMS: The weakness in my right hand I'd say is the worst part of all of this. The more I try to say I don't have this disease - I get reminded of it every time I try and pick up a pen, tie my shoes, open the toothpaste cap, write my name, turn a nozzle, typing. My right index finger is starting to curl. All still possible as of today but so very weak and different from how I used to be. It just really feels that my right arm is just hanging there. My left hand even feels weak in the wrist area.

LEGS/FEET: I have spoken to you all about the constant pain/weakness I've had in my legs since basically the beginning of this. The pain isn't as bad on a daily basis but now I am having this incredibly heavy right foot. It feels so heavy compared to the left foot. I don't think I am dragging it but I wonder if that's around the corner? I take my shoes off and try and rotate my ankles in clock-wise motions and ky right ankle is so stiff compared to the other. All of the ALS-strength tests are getting more difficult. The walking on heels/toes/one-legged jumping/going up stairs backwards/squatting. How does a Division 1 athlete all of sudden lose his ability to run? Or do pullups? It's all gone.

TWITCHING: It's just getting worse and more often. Hands, wrists, calves, neck, back, calves, thighs, feet, and the worst in the upper arms. No tongue as of now I don't think.

I try to explain to my family that I am trying to believe the doctors. But I am just not getting better whatsoever. The symptoms just get worse and more scary. They ask how I feel. I always use the same analogy. I can pick up this desk and throw it across the room. But I have trouble picking up a pen or a quarter. Isn't that what ALS is? I know it could be a lot of things and I am speaking to my therapist about it. But it can't be anxiety anymore. The therapist doesn't think it is. Pete Frates - the incredible man who started the Ice Bucket Challenge said when he googled ALS out of nowhere and found the symptoms - that he had 10 of the 12 symptoms on the page. And it wasn't till then that he truly pushed his doctors to look into it. It's truly not a just an elderly person's disease. I feel like I truly am in the same boat. I have all the symptoms on the page also. What should I do?

I pray for all of you daily and I wanna know what you think I should do? I have been to numerous neuromuscular doctors but never to an ALS Clinic. Is that where I need to go to get this sorted out? Every EMG I've gotten took under 10 minutes. Aren't they supposed to way more thorough?

Please advise and let me know what you think of my continued symptoms. Thank you for reading and I look forward to your responses.
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Old 09-28-2016, 05:02 PM #2 (permalink)
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Default Re: Updating since my thread was closed

None of the neuromuscular doctors had a specialty in ALS? They still should be able to say yes or no but if you are not satisfied then yes go to see an ALS specialist and believe whatever you are told. You live in NY so you should have access to excellent doctors.

We have discussed failure vs feeling, twitching at length. We can not speculate about PALS we do not know. Make an appointment with whomever you feel you will believe and come back at tell us about it. As always ask the doctor what is wrong with me which is an openeded question rather than is this ALS

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Old 09-28-2016, 07:02 PM #3 (permalink)
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Default Re: Updating since my thread was closed

Listen, if you can pick up a desk, you DO NOT HAVE ALS. No way, no how. You do have a big anxiety problem if you have convinced yourself you have a terminal disease while having NO symptoms of that disease. I am amazed how much time people who are ACTUALLY DYING, have to spend telling perfectly healthy people they aren't.
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Old 09-28-2016, 08:39 PM #4 (permalink)
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Default Re: Updating since my thread was closed

Riggz, I thought you had an appointment on August 7th. What happened?
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Old 09-29-2016, 07:54 AM #5 (permalink)
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Default Re: Updating since my thread was closed

Hi Mike,

And thanks for responding. My most recent visit was with my most trusted neurologist. He told me he is officially stumped after he got the results of my second cervical spine MRI. He saw nothing changing in the c6/c7 region even though it still indeed had some issues. He is convinced that it's not my neck and he set me up with an appointment with a psychologist. I was hoping it would be my neck or possibly the vitamin deficiencies - but he is not so sure of either. I will admit that the psych was helpful to get all of my feelings out. It truly is good to talk to someone else rather than the constant with my fiance and family. I thought the meeting went well as I got a lot off my chest but the symptoms aren't changing. He is calling my neurologist this week to get a better sense of what's going on.

I know my threads have been read by the very best on this site. And I continually thank all of you. I do not want to be a pest but I cherish your insight. I really have something wrong with me and I figure asking here is better then letting build it inside. Issues with with bulbar, hands, legs, arms, and feet. I haven't completely failed but this is spiraling downwards.

Thank you again for checking in Nikki & Mike.
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Old 09-29-2016, 08:30 AM #6 (permalink)
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Default Re: Updating since my thread was closed

I am glad you found the psych helpful on some level.

I would suggest a call to your trusted neuro. First let me comment that he may be stumped for a diagnosis but I am sure he is not clueless and has formed an opinion of what it can not be and at least a vague idea of what is still on the table. I would call and say something like this: Dr Trusted, first thank you for sending me to psych it was helpful for me to talk things out but he does not really think that the root of my issues is psychological. I will work with him though to handle my feelings about what is happening to me.

I appreciate and respect all the care you have given me but since you told me you were stumped I am wondering what roads I need to explore? You know I fear this is ALS. I would like to see an ALS specialist. Is this reasonable? If not why not?

Another area you should think about is functional medicine. My hospital recently opened a clinic for this and I find the whole area fascinating. Basically people with this set of disorders do not have an identifiable pathology but their brains send wrong signals that cause real and often severe physical symptoms. This has been called conversion disorder in the past. I don't know if this is what is going on with you but it is something to at least consider. There must be specialists for this in NY. This is NOT functional medicine as in holistic medicine but a highly specialized field usually the doctor would have neuropsych training

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Old 09-29-2016, 03:17 PM #7 (permalink)
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Default Re: Updating since my thread was closed

Nikki,

I am taking this all into account and plan on doing everything you told me to do. I have mad an appt with my neuro and am looking into functional medicine doctors in the NYC area. I hope this somewhat helps me and am happy that I have a new direction to go in.

It's been a whirlwind of over a year a half and you have constantly helped me though this. Thank you from the bottom of my heart. If you are more wary of my symptoms than you were in the beginning please let me know. I can't take the humming sounds and the loss of dexterity in my right hand. It just doesn't add up.

Thank you for your advice and patience with me.

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Old 09-29-2016, 03:25 PM #8 (permalink)
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Thanks for telling us about Functional Medicine. Sounds cool.

So until now, doctors were practicing Dysfunctional Medicine? That explains a lot.

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Old 09-29-2016, 03:43 PM #9 (permalink)
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Default Re: Updating since my thread was closed

No I do not think ALS any more than I did before. That is why I suggested another path. Follow your doctor's advice. Good luck.

Mike, ha ha! The functional applies to the patients who are as ( dys)functional as ever lol
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