Old 03-20-2017, 11:32 AM #1 (permalink)
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Default Very worried and scared with ALS symptoms

Hello all--

First and foremost I would like to commend everyone who has contributed to this site. I have been reading since the new year but haven't had the courage to create an account until now.

I am very impressed at the outpouring of support and love that I've read in many threads.

I apologize for the length of my "timeline" but it is something that I've composed as I am on the eve of visiting a second neurologist at a University hospital.

John
46/Latino/male
5’8 /173cm
175 lbs./79,5 kg.

TIMELINE
February 2015
Minor pain noticed in right forearm muscle similar to tennis or golf elbow. I believe it to be carpal tunnel syndrome because I noticed tightness and pain in forearm and wrist. I experienced numbing in thumb, forefinger and middle finger especially at night when I slept and am convinced its carpal tunnel because most of the discomfort is brought on by working on a computer.
Spring 2015
Began wearing a compression band on my forearm for support in carrying heavier objects or when doing yardwork/gardening. This band minimized pain, helped with support and with ‘vibrations’.
April-May 2015
Began icing and applying Tiger Balm (hot) ointment on inside forearm to cope with pain and numbness. This seemed to help.
Summer 2015 Due to less computer work in the summer, the numbing subsided but my wrist was weak. Continued difficulty carrying heavy objects (e.g 5- gallon bucket of water, two 12-packs of sodas in the right hand, multiple bags of groceries).
September, 2015
Visited an orthopedic surgeon in Santa Fe who had performed Carpal Tunnel surgery on colleagues from work….big mistake. He observed hand, wrist and arm and is dismissive in attitude saying it could be minor carpal tunnel. He suggested I visit him for a cortisone injection if it continued to bother.
October, 2015 Cortisone Injection done by orthopedic. Temporary relief. Numbness of entire hand.
Began using the computer mouse with the left hand to avoid tightness in hand and wrist; pain in forearm and wrist.
November 20, 2015 Cramping of the hand first noticed. Grabbing objects like hammers, heavier objects, squeezing gas pumps, brushing my teeth exacerbated these cramps which made my hand look like a claw. Sometimes I could open the hand but sometimes I required the left hand to open the right hand. Right hand is still noticeably weaker.
Winter 2015-2016 First begin to notice cramps in forearm when flexing (to make a muscle in bicep) or when flexing the wrist downward (e.g. reaching for an object in the center compartment of the car).
Spring 2016 Continue cycling avidly, running and playing volleyball with no issues.
May 2016 While volunteering at my daughter’s school for field day, I notice difficulty with hand dexterity in cold temperatures. It was cold, windy, raining and snowing and my hand felt very stiff and I had difficulty with its flexibility. For the first time, working a zipper on my jacket seems somewhat difficult.
Summer 2016 Continued weakness in the right hand. Difficulty lifting heavy objects while working in the yard/garden and pull starting the lawn mower,
July 2016 Participated in a July 4th, 5 km run/walk with no noticeable issues. I played basketball in the same time period and felt normal. Continued cycling about every other day for 20-25 miles each ride through the summer and fall.
Summer 2016 1st Neurologist visit on referral from Primary Physician. Neurologist performs a Nerve Conduction Velocity Exam to test for Carpal Tunnel Syndrome or problems with the Ulnar nerve. Neurologist finds no carpal tunnel nor ulnar entrapment. He recommends a cervical MRI to try and find the cause.
Summer 2016
Follow-up with Neurologist. Cervical MRI is normal. He recommends stretching exercises in the neck to relieve symptoms in the right arm.
Fall 2016
Noticed more cramps in the right foot while stretching and in the right ankle, calf and hamstring, especially during sleep times when repositioning myself for comfort in the bed. I also noticed occasional cramps in the right bicep when flexing. As a result, I purchase Vitamins B and Potassium supplements to aid with cramping and drink more water.
Sep-Oct. 2016
Begin to notice slight fasciculation in right arm (bicep mostly; sometimes shoulder and sometimes in elbow, forearm or fingers.
November 2016
Began running again (first time since July) and noticed stiff legs when running. My legs felt heavy and my stride also felt sloppy while running and my left toe skidded on the floor on a few occasions. Initially, I attributed this to rust (not having run in 4 months). I ran 2-3 times and continued to feel sloppy especially in the beginning.
Dec. 2016 Appointment with Primary Physician. I complained of fatigue, arm and wrist weakness, twitching, numbness in pinky and ring finger of the right hand when sleeping, and sloppiness including occasional toe drag while running. He recommended bloodwork and MRI of brain.
Dec. 2016 Follow-up with Primary Physician. Blood tests and MRI normal. Primary Physician noticed atrophy in right hand at the base of the thumb. Recommended another visit with Neurologist again about possible Cubital Tunnel Syndrome or ulnar nerve entrapment because I cannot move the ring finger and pinky together with the other fingers and have decreased dexterity (stiffness) in the right hand.
Dec. 2016 While playing with the family dog, I ran backwards with small quick steps and tripped over myself. I feel like my legs are stiff and not able to move quickly. I feel uncoordinated.
Dec. 2016 While playing basketball with my son, I noticed awkwardness in sprinting and jumping (jogging and dribbling the basketball are no problem). Also awkwardness in shooting the basketball especially from long distances (past the 3-point line).
January 2017 Began to try to improve sleeping habits. I reduced coffee intake from 6-8 cups per day to 3-4. I also try to avoid staying awake into late hours and try falling asleep before 11:30-12:00pm. I also began a workout routine which includes some cardio and light weight-lifting. My running is slower (pace) and stride still feels sloppy especially in the beginning. Fatigue is more noticeable. With weight-lifting, I notice I am lifting similar weights in the legs as I did four years ago but with arms and shoulders I cannot lift as much as I used to.
February 8, 2017 3rd Neurologist visit on referral from Primary Physician. Symptoms of fatigue, wrist weakness, twitching and awkwardness in running (stride) and jumping (less explosiveness /height (coordination). During exam, Dr. notices atrophy on palms at the base of the thumb and on the backside between thumb and forefinger. Neurologist also notices fasciculation in arms and knees. Neurologist performs routine tests including the Babinski reflex which is absent. I am able to do calf raises but walking on my toes is somewhat awkward in the left leg. I seem to have hyperreflexias especially in the knees. Doctor says issue with the hand is not sensory but rather motor (I can feel hot, cold, vibration, pain, etc.) but cannot move ring finger and pinky laterally together with other fingers when the hand is wide open. I mention to Neurologist that I regret looking for causes online because the internet says it could be anything from dehydration to ALS. Neurologist first mentions ALS in response to my comment and suggests we conduct an EMG. Neurologist says this cannot be Multiple Sclerosis (MS), Muscular Dystrophy (MD) nor Parkinson’s Disease.
Post Feb.8, appt. Fasciculation increases. It is still constantly present in right arm (bicep, elbow, shoulder) and more noticeable though not constant in legs. While laying down, I notice it in my back, neck, chest and sometimes in buttocks.
February 21, 2017 EMG with Neurologist in both arms/hands and legs/feet. Due to my nervousness, I experience fasciculation on both arms and legs throughout the exam. Doctor says EMG shows there are abnormalities in right arm and somewhat in the left arm (no details). No abnormalities in legs. Doctor recommends an appointment with University Hospital Neurology department and perhaps an MRI of the spinal cord which he will coordinate.
My incredibly loving and supportive wife and I agree Neurologist is doing his due diligence in trying to eliminate ALS as a possible diagnosis before looking for other illness/disease. In a phone conversation he says “this is not a diagnosis but just symptoms” in his suggestion to visit the University Hospital Neurology Department.
February 25, 2017 I play baseball with my son. I am able to throw, catch and bat the ball quite well. I am able to jog but have an “anxious” feeling in my body when trying to move side to side quickly. My legs feel somewhat stiff but could be due to anxious feeling but I feel like sprinting or moving laterally quickly is ‘strange’.
February 27, 2017 Began a light weight-lifting routine for persons aged 40+ (arms, legs, chest, shoulders routine including calf raises)
University Hospital Neurology calls to make appointment. It is scheduled for Tuesday, March 21, 2017 at 11am. I begin to feel anxious/nervous about the ordeal. Fasciculation increases as a result. No mention of spinal cord MRI. University Hospital says they will receive me as “new patient”.
Feb 27-Present Having difficulty sleeping. I am anxious, nervous, worried. Also, I feel constant fasciculation in right arm and in left arm to a lesser extent. I also notice them on my back, chest and stomach occasionally which compounds my nervousness. I am also noticing a more sensitive gag reflex especially when brushing the back of my upper teeth.
February 28, 2017 Ran for 24 minutes, 2.12 miles on an indoor track. As has become the new norm, I feel sloppy and a bit uncoordinated in the beginning. I fatigue in the end and notice my toe dragging on seldom occasions which seems associated with fatigue.
March 1-19, 2017 I am nervous, worried and not sleeping well at all. I am an emotional wreck in thinking that I have ALS. I feel extremely angry and sad about this and also feel extremely guilty about the burden (emotional, physical and financial) I would be for my wife, our two elementary school-aged children and our families. I am also quite scared. I cannot sleep well and have no appetite. I have lost about 5 pounds in March because I am a nervous wreck.
March 21, 2017 Appointment at University Hospital Neurology Department at 11am.
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Old 03-20-2017, 05:37 PM #2 (permalink)
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Default Re: Very worried and scared with ALS symptoms

Hi, That's a long one but I did manage to read it all. A lot of your post reads feel numb, pain, fatigued.... ALS does not feel like anything, I feel fine but I have stuff that does not work. As far as ruling out ALS so you can look for other things, that just isn't how it works. Being no test for ALS you have to eliminate everything else then the only answer is ALS. If you can do a 5K and a weight routine designed for any age with no inability to do any of the exercises, you do not Have ALS. Anxiety and hyper vigilance can be very life altering, try to get help with that. Dr Google is not a friend. You do seem to have something going on, just not ALS.
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Old 03-20-2017, 06:38 PM #3 (permalink)
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Default Re: Very worried and scared with ALS symptoms

Agreed. I didn't see ALS in there at all.

Your extensive history is very helpful.

By contrast, let me tell you my wife's history:

While squatting down in a bookstore to look at the lower shelf of books, she fell over. The muscle in her foot that should have kept her from falling did not work.
EMG showed ALS.

That's it. No feelings of weakness, numbness, fatigue, pain, cramps, or weirdness. No feelings at all. Just that muscle no longer contracted.
Then another muscle stopped working, and another...

I saw no ALS in your post. Good luck and let us know how it goes tomorrow.
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Old 03-20-2017, 09:42 PM #4 (permalink)
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Default Re: Very worried and scared with ALS symptoms

John,
You can't sit back and wait for someone to share more of the EMG with you, nor assume it doesn't matter. By your description, it may have supported arm nerve damage, ALS or anything in between, or not.

Get a copy of the report and if you post the notes here, we will help you interpret them. You should bring them to the University anyway since records don't always get transmitted where they should. But your appointment is tomorrow...I should think you will know more. But ask for a copy of the report anyway, as well as any labs and scans. You can't rely on other people to keep and leverage your records. You may also want to read the 2nd opinion sticky and make a list of questions to ask for the appt. tomorrow.

Best,
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Old 03-23-2017, 12:52 PM #5 (permalink)
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Default Re: Very worried and scared with ALS symptoms

Thanks for writing everbody.

Accompanied by my wife, we met with a doctor at the University Hospital on Tuesday. She seems to be a competent doctor and was very thorough in asking me about my symptoms and timeline. She examined me and gave me several standard neurological “tests” including:

Babinski reflex (absent again)
HOffman reflex
Walking on my tiptoes and heels
Vibrating tuning fork mechanism
Touching finger to nose
Following her fingers with my eyes etc.
Flexibility and strength tests in hands/fingers

She noticed the twitching on my arms (shoulders, triceps, biceps), atrophy on my right hand, atrophy on right forearm and shoulders and hyperreflexia in the knees. While she didn’t make a diagnosis, unfortunately for me, she says all signs are pointing to ALS. Needless to say, my wife and I are devastated. We are scared and not sure how to cope with it all. We are devastated!!!!!!!!!!!!!

She has requested a follow up appointment in which she’ll conduct a second EMG exam. Furthermore, she needs all my medical records so that she can be absolute sure as she says there are other illnesses that can mimic ALS including autoimmune symptoms, etc. Meanwhile, the University Hospital is not a "Certified ALS Center" so I am trying to see if my insurance will allow me to go to a nearby CERTIFIED ALS Center.

Meanwhile, I've lately noticed a strange feeling in my back (Left side below shoulder). It feels like a little numb or like a pulled muscle (i didn't pull anything) or as if its swollen or cramping. It doesn't hurt but just feels very different. Any clues as to what this could be?

Last edited by profeJ : 03-23-2017 at 12:55 PM Reason: forgot last paragraph
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Old 03-23-2017, 01:15 PM #6 (permalink)
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Default Re: Very worried and scared with ALS symptoms

I am sorry to hear this and hope that further investigation leads you elsewhere.

Re certified clinic. You are likely referring to ALSA certified? MDA clinics are just as likely to be excellent. I go to Mass General in Boston which is MDA. It is more a political thing and their roots when founded. I think clinics that have neither may be fine too. At this point I would be looking mostly at your doctor's credentials particularly where and what kind of fellowship she did and also her residency. Looking into a place where you would go for a second opinion makes sense though

Good luck
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Old 03-25-2017, 02:06 PM #7 (permalink)
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Default Re: Very worried and scared with ALS symptoms

Hi, all

Is anyone familiar with the Barrow Neurological Institute in Phoenix? If so, what has been your experience? I am trying to get an appointment there. I have read favorable reviews.

https://www.barrowneuro.org/
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Old 03-25-2017, 05:29 PM #8 (permalink)
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Default Re: Very worried and scared with ALS symptoms

They have a good reputation. You may be interested in this thread. Finding a doctor in AZ
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Old 03-25-2017, 06:13 PM #9 (permalink)
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Default Re: Very worried and scared with ALS symptoms

Very sorry to hear this, profeJ. There's a lot of support to be found here. Hope you stick around.
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Old 03-27-2017, 03:37 PM #10 (permalink)
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Default Re: Very worried and scared with ALS symptoms

Update:

As I mentioned, even though I have yet to be officially diagnosed, my wife and I are devastated. We are not handling this well and are unable to sleep well or even eat and it's affecting our performance at work, and, unfortunately, our day to day interactions as a family (our children still don't know but are noticing our behavior). Is it bad for us to consider taking an anti-depressant and/or talking to a therapist? I have no experience with either options but I don't know how we're going to continue as we are very stressed out!

My second EMG at the University Hospital is scheduled for next week but I am hoping to be seen at Barrow Institute (Phoenix) instead.

Thanks for reading! ;(
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Old 03-27-2017, 03:57 PM #11 (permalink)
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Default Re: Very worried and scared with ALS symptoms

There is nothing wrong with seeking help to handle the stress and anxiety. If it is affecting your lives so severely, you should surely do so. Good luck
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Old 04-03-2017, 11:28 AM #12 (permalink)
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Default Re: Very worried and scared with ALS symptoms

Tomorrow, April 4 is the second EMG scheduled with the University Hospital. My wife and I are anxious, nervous, scared and all emotions in between.

Please wish us luck and if you remember, send some positive vibes our way.

Thanks.
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Old 04-03-2017, 12:50 PM #13 (permalink)
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Default Re: Very worried and scared with ALS symptoms

Wishing you all the best. Although this is an appointment for an EMG and not a regular visit be prepared in case the opportunity to ask questions / obtain information occurs. Sometimes you get that chance. It depends on the set up and protocols of the institution
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Old 04-11-2017, 12:58 PM #14 (permalink)
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Default Very worried and scared with ALS symptoms

Update!

I went to the University Hospital for a second Nerve Conduct Study and EMG.

NCS: The doctor tested both arms, hands, wrists and my right leg.

EMG: The doctor tested my right arm, hand, as well as my left arm, right leg and back.

While she said she tried everything to find symptoms that mimic ALS, in the end she couldn't and therefore diagnosed me with the disease and started me immediately on riluzole (Rilutek).

My wife, our families and I are devastated by trying to remain positive. I have scheduled a second appointment (second opinion) for later this month in Phoenix, AZ but I'm not getting my hopes up. Thanks to everyone who has sent out support and positive vibes. As you all know, this is a very bitter pill to swallow but I"m trying to stay upbeat for the sake of my young children.
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Old 04-11-2017, 01:12 PM #15 (permalink)
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Default Re: Very worried and scared with ALS symptoms

I am very sorry to hear this. Yes , please go for the second opinion from an ALS specialist. This was an ALS specialist?

There is certainly much life yet to be lived but I know the initial shock is overwhelming.

I am going to create a new thread for you in newly diagnosed
Nikki J is offline  
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profeJ (04-11-2017)
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