My early Dr. Appointments, Testing, and Diagnosis

 
 

How it all started….My right shoulder had been hurting me for several months especially when I slept. I started to notice that my hand was becoming weak to the point that I could not touch my thumb to my pinky finger. My hand and finger strengh was getting weaker and I didnt know why.

Realizing that this was not normal I decided to go to the first of what was to be one of many doctor appointments.

 Following is an account of the doctors, procedures, and surgeries that I have experienced and have gone through.

 8 January 2008

 I had my shoulder examined by a orthopedic shoulder doctor to determine what was going on with my arm and to see why I was losing strength in what I believed was a perfectly healthy arm. He tested my strength and determined that he would need to do a MRI to see what was causing the discomfort and loss of strength. The MRI was scheduled for January 15.

15 January, 2008

I went to my MRI appontment as planned. Now all I had to do was wait for the results.

17 January, 2008

I went back to the orthopedic shoulder doctor with Diann to get the results of the MRI. The doctor told me that I had “torn rotator cuff.” I thought that it was from a golf outing that I had with some of the guys several months ago. At that time we still needed to know whether the loss of strength was caused by my shoulder. More testing to follow…

22 January, 2008

The orthopedic doctor gave me a cortisone shot in my right shoulder to determine whether the the hand was part of the shoulder problem. I was told to go home and see how the hand responded.

29 January, 2008

I woke up in the morning and my muscle between my thumb and index finger had atrophied. Visually it sunk into my hand in that location. Knowing that was not a good sign I called the doctor and set up a follow up appoinment to get his opinion.

31 January, 2008

The orthopedic hand doctor examined my right hand where it had atrophied.  With no explanation to follow he ordered a EMG which is a nerve test. I was told that I needed to now and go see a neurologist.

1 February, 2008

I saw a Neurologist to get the EMG test results. They faxed the results back to my ortheopedic hand doctor.

5 February, 2008

Upon my next appointment with the orthopedic hand doctor he scheduled an MRI of my neck and shoulder to see if I had a pinched nerve. The MRI was scheduled for February 7.

7 February, 2008

I had a MRI done of my neck and shoulder.

12 February, 2008

During this visit to my orthopedic hand doctor he suggested that I go and see a neurosurgeon. I was luckily able to get  an appoinment the following day . At this point I felt like a ping pong ball bouncing from doctors office to office.

13 February, 2008

I went to see a world renoun neurosurgeon to review the finding of the EMG (nerve test) and the MRI. After reviewing the documents he stated that it was not in my spine. What a relief! Then you guessed it I was referred to a vascular surgeon.

13-29 February, 2008

During the wait time to get into the vascular surgeon both of my arms starting to cramp. The cramping continued throughout my arms below my elbow.

29 February, 2008

Finally I was in to see the vascular Surgeon. After examining and reviewing my MRI, EMG, and orthopedic hand and shoulder doctor reports he suggested that I get x-rays of my chest and spine. I was able to get the x-ray done during that visit. It was the doctors suspicion that I had “Upper Ext. Arterial w/TOS Maneuvers” but he wouldnt know exactly until he had reviewed the x-rays to be certain.

7 March, 2008

I went back to the vascular surgeon to review the x-rays &  Upper Ext. Arterial w/TOS maneuvers. He told me that I had TOS and needed surgery. TOS stands for theratic outlet syndrom which compresses the nerves in your arm not allowing the neurological information to flow from the arm to the hand. In other words my hand was not getting the information it needed to stay alive and was beginning to die.

13 March, 2008

I went to a physical therapist to get a baseline.

9 April, 2008

I had surgery for TOS on this day and they removed scar tissue from my nerve bundle.  The vascular surgeon was very pleased that the nerve bundle looked “beefy and healthy”.  He also removed an extra muscle, a Roos’ band, and my top cervical rib. In fact at that time he asked for permission to put my successesful surgery as a case study in his book. Being the business guy that I am I asked him for proceeds. He laughed and said that I was still high on drugs. Little did he know that I was always thinking about making money.

12 April, 2008

After a couple of days in the hospital and plenty of pain medicine I was released from the hospital to go home and recover from surgery.

1 May, 2008

After several weeks of healing time I went to my follow up appointment with the vascular Surgeon. He was happy with the progress of my arm and felt that I was on my way to a healthy recovery.

19 & 30 May, 2008

I started physical therapy.

12 June, 2008

I was released to do physical therapy at home at this point and was happy to not have to go into any more doctor offices for a while.

23 October, 2008

I went to my follow up appointment with the vascular surgeon. I was told that I needed to go to a hand specialist to work on the movement and recovery of my fingers.

27 October, 2008

I went to the hand specialist and was shown several different excercises to do in order to regain movement of my fingers.

14 November, 2008

I went back to the hand specialist and recieved a hand splint to wear to help strengthen and stretch the muscles in my hand and fingers so that they wouldnt curl under. The splint allowed them to stay in the straighten position to help strengthen them.

18 November, 2008

I went back to the orthopedic shoulder and he re-examined my right shoulder and scheduled yet another surgery for my rotator cuff.

1 December, 2008

I had rotator cuff surgery.

2,8,10,15 December, 2008

I started my physical therapy for rotator cuff.

16 December, 2008

I went to my follow up appointment with my orthopedic shoulder doctor.

7 & 12 January, 2009

I had more physical therapy for my rotator cuff.

13 January, 2009

I had a 6-week checkup following my surgery with my othopedic shoulder doctor.

14,21, & 27 January, 2009

More physical therapy for my rotator cuff.

4, & 23 February, 2009

More physical therapy for rotator cuff.

24 February, 2009

I had my 12-week checkup following surgery with my orthopedic shoulder doctor.

2 & 25 March, 2009

More physical therapy for rotator cuff.

1 & 6 April, 2009

You guessed it still more therapy to come.

7 April, 2009

I had my 18-week checkup following surgery with orthopedic shoulder doctor. The doctor told me that I had regained full range of motion back from surgery, but he still did not know why I did not have the muscle strength to lift my arm on my own without help. He suggested that I go back to the vascular surgeon that preformed the TOS surgery to inquire.

9 April, 2009

I went in to meet with my vascular surgeon. He was suprised to see the loss of strength in my arm and the fact that my fingers had started to curl. He ordered a second EMG with the neurologist.

22 April, 2009

I went to get the second EMG with neurologist. At this point I asked the neurologist what she thought was going on and to see what the results from the test were. The neurologist told me that I had ALS “Lou Gehrig’s Disease”.  I was floored and it literally took my breath away. I knew all about the story of Lou Gehrig being a baseball player back in the day and a huge sports lover. I asked her if she was sure that this was in fact what it was. She stated that it was her diagnoses and suggested for me to get a second opinion.

22 April, 2009

I wasnt prepared to accept this at this time and immediatley called my vascular surgeon with the diagnosis. He wanted yet another MRI to recheck my neck.

24 April, 2009

I had another MRI

27 April, 2009

I wanted a second opinion and met with another neurosurgeon. The docotor read the MRI and said that there was nothing  showing that would cause the weakness and atrophy in my hand and arm and concurred with my first neuro surgeon that I had ALS.

28 April, 2009

Hoping for the best and doing my due diligence I met with another neurologist for a third opinion. Acceptance starts to sit in.

8 May, 2009

I went to see my vascular surgeon.

9 May, 2009

I called the neurologist who gave me the EMG tests for an appointment to start treatment. I was told I would not be able to get in until the 23rd of June.  (Over 6 weeks!)

26 May, 2009

I went back to the second neruologist to get my blood drawn to test for B12 deficiency and metal toxins.

29 May, 2009

I went back to the neurologist who gave me the second opinion and was told that there was no cure for ALS and the only medicine that was available and FDA approved was Rilutek. I was also told that by taking this medicine that it  may only extend my  life by 2-3 months. The medicine costs approximately $1,200 per month. With only one option I decided to take the medicine and see how my body reacted to it. I set my next appointment for 28 July, 2009

23 June, 2009

I have always been an out of the box thinker and have been introduced to a lot of different medical and spiritual practices by my daughter Angela and decided that I would go see a homeopathic practitioner during my visit in LasVegas. I recieved acupuncture treatments from the same doctor to get the chi in my body flowing and open up in blockage that was not allowing my body to communicate properly to itself. The practitioner told me that my neck was out of alignment  and suggested that I see his partner that specialized in upper cervical procedures. Angela bought me the “Better brain book” and “Eric is winning” which are two books about ALS that tell me healthy ways to eat, what herbs to take to fight the ALS and a story about a survivor of ALS.

25 June, 2009

I got one more acupuncture treatment from the homeopathic practitioner in Las Vegas and then went to see a NUCCA Chiropractor in Las Vegas who specializes in upper cervical spine procedure.The practice of NUCCA is a gentle movement rather than an abrupt one of the spine and neck.  They believe that if the Atlas (your brain) is not centered correctly on the Axle (your spine) the brain cannot give the nerves the correct information to heal the body. The chiropractor took X-rays of my neck and found that my head was 5/16″ off center of my spine. I could only move my head about one-fourth of the way to the right.

The chiropractor gave me an adjustment thankfully after I was able to move my head all the way to the right without pain. The chiropractor recommended that I continue treatment in Knoxville when I returned home and gave me information on chiropractors who specialized in upper cervical procedure practice. The closest one is 3 hours away in Nashville.  He also found one in Athens (which is only about 1 hr from our house) who practices Gaostic, which is a method just below NUCCA. Im looking into setting up an appointment with him.

8 July, 2009

At the doctors request I sent in a specimen to the data lab to determine if my body cells had stored toxins. The homeopathic practitioner in Las Vegas is going to phone us with the results when he gets them.

11 July, 2009

Based on a close family friend, Michelle Montgomerys recomendation,  I called her cousin who was receiving treatments from an energy specialist who treated people with all types of terminal diseases with a process called contact reflex analysis. To say the least this man has a very inspirational story and was nice enough to spend time with me on the phone sharing his cancer survivor story and sent me brochures on several of the things that he is doing. I am also looking into this path as well.

14 July, 2009

NAET Treatment for:  Brain Body Balance Formula… In effort to be proactive and aggressive to beat this. I set up an appointment with a N.A.E.T. (Nambrudapad Allergy Elimination Technician) practitioner based on a good friends recommendation, Sally Wagner. This practictioner muscle tests me to see what my body is sensitive to.  She now will start de-sensitizing me so that what she finds out I am sensitive to will be beneficial to his body instead of just passing through and not being absorbed. At this moment I am taking 30 different herbs.

20 July, 2009

NAET Treatment for:  Egg Mix I went back to the N.A.E.T. Practitioner to have her start the second of 12 appointments to follow to figure out what my body reacts postively to.

July 23, 2009

NAET Treatment for:  Calcium Mix

July 29, 2009

NAET Treatment for:  Vitamin C Mix

August 3, 2009

NAET Treatment for:  B Complex

August 5, 2009

NAET Treatment for:  Sugar Mix

August 9, 2009

INAET Treatment for:  Iron Mix I have  been to six treatments so far and am now taking B vitamins and am looking into getting B12 shots. Michelle Montgomerys cousin Dennis is also helping me find different herbs that have given him energy and success in his own fight with cancer.

August 10, 2009

Grostic Treatment with Chiropractor

I am going to Upper Cervical appointment with a doctor here in TN that was referred from the doctor in Vegas to review my x-rays and begin the up keep of my procedure to keep my neck , brain, and body in alignment and working together to keep the neurological messages flowing throughout my body in order to help stimulate my nerves and muscles.


August 12, 2009

NAET Treatment for:  Vitamin A Mix

August 18, 2009

I am going to a Dr. this week to get some B 12 shots to help increase my energy!

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22 Responses to “My early Dr. Appointments, Testing, and Diagnosis”

  1. Joyce Klein Says:

    Don
    What a journey, Troy and I will keep you and your love ones in our prayers. If you need anything please give us a call.
    God Bless
    Troy& Joyce

    • steffen5 Says:

      Troy and Joyce,

      I appreciate your thoughts and prayers. That means a lot to Diann and I. Were headed to our lake house for two weeks but will catch up with you guys when we return. Talk to you soon!

      Don

  2. Rich Wellner Says:

    Great site you guys. As you kwow, we are and always will be here for you.

    • steffen5 Says:

      Rich and Judy,

      Thanks for looking at the website. I look forward to boating the rest of the summer with you guys and enjoy having a beer and talking about the good ol days.

      Don

  3. Jim & Lila Stafford Says:

    Don and Diann, Glad you’re exploring the non-traditional approached…the traditional experts sure as hell didn’t know what was going on. I’m glad I had a chance to talk to you at Scotts wedding about the importance of faith in our lives…know that evevy day I will be offer a prayer that God demonstate His power by curing you! Love ya, Jim Stafford

    • steffen5 Says:

      Jim and Lila,

      Diann and I both enjoyed staying with you at Hoves wedding and had a great time! I still cant get over the 48 hours of lonesome dove that I had to watch instead of football. I am working hard on a one arm swing and still believe that I can hit it a ways. Thanks for your prayers as you and I have discussed I totally believe that everything happens for a reason and sometimes you dont always know what that is at the moment you ar experiencing it. My faith in God will get me through.

      Don

  4. Bob Hove Says:

    Don, I’m sure you can beat Jim in golf with one arm.
    You know Sue and I think about you daily and you’re in our thougts and prayers….Look forward to seeing you in Atlanta…What a great idea to have this website. Thanks to Angela.
    Love you brother…Bob

    • steffen5 Says:

      Ho-vay,

      Hey Bro, thanks for your repsonse. I am really looking forward to getting together with you in Atlanta as well as your retirement party in Raleigh in September. This should give us the ability to sneak a couple more things by Sue and Diann. Love ya bro… Talk to you soon!

      Don

  5. Julie Elden Says:

    Dear Don and Diann,

    Wow I can’t believe all you have been going through. My thoughts and prayers are with you both and your family. You are a real trooper Don and I know you will fight on. Be strong and know we are all behind you. Diann hugs to you.

    Love Julie

    • steffen5 Says:

      Julie,

      Hey there! Good to hear from you. It brings back a lot of memories of Brian and Angela as little kids when you watched them for us. Thank you for your prayers and thoughts. I appreciate your support and hope you are doing well in California.

      Don

  6. Mark Sharitz Says:

    Don,

    Let me warn you, when you play (and beat) Stafford with one arm, beware as the guy likes to yell “yip” just as you are about to hit an important putt.

    We love you brother and look forward to seeing you in a couple of weeks.

    Mark and Eileen

    • steffen5 Says:

      Mark and Johnson,

      Theres no sweat beating Stafford. Not even in the realm of thinking. Looking forward to seeing you guys in Atlanta. Were going to have a great time. Love you bro.

      Don

  7. Diane MacLennan Says:

    Hi Don….wow, you’ve been through plenty of stuff and we pray that things change for the better soon!!! Keep on with whatever helps you feel better!! Tell the family hi from us and get better…
    Diane and Mac

    • steffen5 Says:

      Hi Diane and Mac,

      Its definately been a whirl wind. I appreciate your thoughts and prayers. I think about you guys alot and our days in college when we rented apartments across the hall. Hope everything is going well in your family. Give us a call sometime and catchs us up. Talk to you soon.

      Don

  8. Jeb Koury Says:

    Don, as you and I have spent many hours and days at black jack tables in Las Vegas, I am certain that since we have missed the table games together for the past year or so we need to plan our next therapy session in the Bellagio at table 1 in front of the piano bar.

    Your voice ringing out through the casino, “Hey the Dealer went Bust” and your great grin of glee as you rake over the many chips from that busted hand of the dealer to your hand is great therapy for all to enjoy.

    As you and I have enjoyed and will continue to enjoy this game in LV watching your energy while always winning is a great experience to you and I from first to third base.

    Lets get all to show up for a shoe or two and start our own Don’s black jack tournament.

    You are so blessed to have the family and friends you enjoy, through our Lord keep showing that bright light that you bring to all each day, you make a beautiful difference to many in life.

    When shall we meet in Vegas?

    Jeb Koury

    • steffen5 Says:

      Jeb,

      Well said. We definately have to plan a trip to Vegas soon. I love the sound “Dealer goes bust” at the black jack table, while changing it up a bit and stirring the pot at the craps table. Its all about the chi! I enjoy your friendship and all the conversations we have about sports, especially the tie we have with NC. I ll never forget the time that we played blackjack until 6 a.m and then you had to go to your physical an hour later and teach a class at work.

      The wedding was a blast and Diann and I enjoyed spending time with you and Royce and the family in FL. I appreciate your prayers and as you know I always will keep pushing forward and will fight until I beat this. Many more trips and memories to make. Give me a call so we can plan a trip to Vegas!

      Don

  9. Austin Says:

    Mr Steffen,

    I apologize for not saying hello sooner, no excuse Sir. I hope you are doing well as I know you and your family are strong and very supportive of one another. Angela has done a good job of keeping me in the loop and I have definitely kept you and your family in my thoughts and prayers. I am still living in DC, in the Navy and working at the Pentagon. I have the golf itch and wold love to play with you sometime if you ever want to make the trip up. I’m also very open to the idea of another tropical vacation (and choking Mark out for the second time while wearing my silk robe, pink socks and slippers, nothing but love Mark). Seriously, you inspire us all, have a great faith and family, and have many good times ahead. Please e-mail me when you can and know you are always welcome in DC. Please give Mrs. Steffen a hug for me. Talk to you soon, Godspeed.

    Austin

    • steffen5 Says:

      Hey Austin,

      Thank you for your prayers and thoughts. Our family always enjoys spending time with you. Matter a fact everyone asked about you when we were at the lake house recently. You have me rolling at the vision of you and Mark wrestling with the robe and slippers. Who else in the worlds could pull that one off. You can take a lot of heat and I like a guy that can stand on his own two feet and isnt shy to dish it right back. I am glad to hear that you are doing well in the Navy and taking charge. Your a class act and I am glad that you and Angela keep in touch. You will have to come and visit us in TN or we will all have to go on a tropical vacation soon. Your always welcome! Keep in touch with me. Best wishes to you.

      The Don….

  10. Dan & Nancy Brier Says:

    Dear Don & Diann,
    We think of you often, it was at McDonalds Eastwood and Military Cutoff here in Wilmington (we have been here since 2002) that Nancy and I met you and Diann on our first weekend outing from Raleigh (1991). We were not even unpacked but went to the beach. Oh how I regret not taking your advice. Buy property here not in Raleigh you said. Military Cutoff then a country two-lane road is now a six lane with the Mayfair Town Center.
    We were very sorry to here about your ALS issues. You and your family will be in our prayers daily, we attend church on Wrightsville Beach and you will be there with us.
    Thanks to Diann & John Carson for e-mail.

    God Bless and The Best to You and Your Family this Holiday Season.

    Dan & Nancy Brier

    • steffen5 Says:

      Dan and Nancy,

      Time flies… So true I wish I would have bought something there as well and had taken my own advice. Real estate exploded after we talked about it. I am looking at all directions to beat ALS and I appreciate your email and wishes. I am glad to know that Diann and John sent you the site to get you up to speed. Best wishes to you and your family.

      Don

  11. http://bestnaturalhealthsupplements.com Says:

    I was looking through some of your content on this site and I believe this internet site is real informative! Keep on posting.

    • steffen5 Says:

      Wonderful! That is what we want is to be able to share our story and help others.
      Blessings to you and your loved ones…


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