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tripete

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PALS
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Today marks the second anniversary of my first ALS diagnosis. We lived in Northeast Georgia at the time and had traveled home to Pennsylvania for the long Thanksgiving weekend. On Sunday of that weekend we drone form Pennsylvania down to see Dr. Pulley in Jacksonville, Florida for our Monday morning appointment. I had been trying to get into the ALS clinic in Atlanta but they where not returning calls.

I had been on the diagnostic roller coaster for over a year and a half, knowing that something was wrong with my breathing. Finally after every specialist know to man had poked and prodded me my local neurologist found issues in my EMG and said that I needed to see a muscular neurologist with the hint of ALS being the problem.

The first hour of the appointment went well. Dr Pulley joked and told me and my wife that he was certain it was not ALS. I had plenty of strength, my FVC was 150% etc.. Then came the EMG. His demeanor completely changed. We heard all the "scratchy" noises on the machine, saw the strange patterns and Dr. Pulley went silent. After a while and three total of hours he told us that he was now certain that it was ALS. The EMG showed problems in all muscle groups. The only ones he did not check where in my face. He said he could but did not see any point in it. He wrote me a letter on the spot of my diagnosis, told me to get Medicaid and Social Security Disability started.

On the way in to his office, coincidentally Atlanta had called me back. I told them I would call them back and I did and set up a second opinion appointment for the next week. It confirmed Dr. Pulley's diagnosis and added that it was respiratory onset. We moved back to Pennsylvania in February and the ALS department in Hershey gave me a third positive diagnosis.

So here I am. In this journey I have learned how little the medical community knows about anything. They are for the most part nice people but that does not change their ignorance. The equipment they supply us with is antiquated and extremely expensive.The federal Govt. (I am not a Vet) just doesn't care. We are on our own. This community has supplied me with more answers than have any other resources.

Life stinks with ALS. It is simply a waiting game for the next foot to drop. I try and help and love my family, but each day it gets harder as my life becomes more and more depleted. This is the worst anniversary ever.
 

Annie's Phil

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Good morning Peter,

Your story is a familiar one - it took 2 1/2 years to get Annie's disease diagnosed. Many doctors, many tests, much traveling, many incorrect tentative diagnoses and ineffective treatments. And of course, ultimately the devastating conclusion of ALS.

After absorbing the initial shock, Annie became remarkably peaceful. She decided that she would not allow her loss of things in this world to distract her from the reality of the unfathomable promises given to His redeemed. She willed to "let her mind dwell on such things" (Php 4:8) Indeed, His promises received by faith became her living reality and well-spring of joy in her eager anticipation of seeing Him. (2 Co 5:1-9; Heb 11:8-16,38-40; Heb 13:5,14; 1Th 4:13-18; Php 1:21-23; 1 Co 15, among many others with which I know you are familiar.)

Next week will mark 5 years since my beloved bride departed this realm to revel in His presence. Her response to her disease taught me much.

I know that you will understand all that I've referenced. I pray that He will supply you with an overflowing abundance of His grace and peace.
 

starente15

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I have no words Pete. Just know that my thoughts are always with you.
 

raabc

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Messages
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That made me think of when I was dx. It took what seemed to b years to dx me too but when I look back it was bcuz I kept missing appts. At the time I was living in Mcconnelsburg pa & Hershey Medical Ctr was around 89 miles away. I had had a foot drop at work but was to busy to see a Dr plus I figured that I was tired from working 60+ hrs a week & figured maybe I caught something from a pt.

But then I started dropping thing, falling and walking into things & had another foot drop. But I knew it was time to get to the bottom of this So I called a Neurologist & after a couple visits he sent me to Hershey Medical Ctr. After a few appts & a few missed appts my Dr admitted me into the NICU & I got a dx of PMA (progressive muscular atrophy) that was my first opinion.

At the time I was dx I could barely walk so I moved closer to my family thinking I wanted to spend more time with them. I went to a Neurologist after I moved back home in Bethesda md & he wanted to do another emg. The Dr who did it only did my rt arm & leg then hurried out. I said to him as he was leaving what about the left side? He said I'm sure I'll see the same thing then he closed the door.

I was later told by my Neurologist that I was now also showing signs of umn involvement which meant that the pma progressed to als in just 6 months. I later learned that that was normal. He wanted me to b seen at Hopkins in Baltimore so I went.

The Dr there was very nice telling me that it could b something else (I later learned my Dr didn't send my records just a note that said my dx so the Dr at Hopkins didn't know my history) ntls I had another emg & nvc & when I saw the Dr 5hrs later he confirmed my dx for the 3rd time. He said I could still b seen by my neuro in Bethesda & they would work together bcuz I lived about an hr from Baltimore & not being able to drive it was difficult to get there but if an ER happened I would have to go see him.

I am now in Hospice care but still fighting! KIA KAHA
 
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KimT

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Pete,

Your posts always get to me. I went through the same diagnostic nightmare and my LOCAL neuro was first to call it. He only had one other ALS patient but he knew me and knew my body. Three ALS specialists said I was too strong to have it (before doing EMGs).

Phil, I needed to read your post today. I've let fear take over. Last night I downloaded 18 audible books on prayer and encouragement. But reading your post really helped me.

Pete, I'll pray for you.
 

scaredwifetx

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tx
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So sorry Pete. I remember the day, hour and moment Steve received our second opinion. I remember the noise as Steve was getting the emg. ALS sucks!
 

Manhattanite

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Joined
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When you talk of "waiting for the other foot to drop" I totally understand what you mean. I was just telling a friend the other day that I just live waiting for the other shoe to drop, and that things are not yet as bad as they could get. It is exhausting.
 

bigmark1954

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Jan 31, 2014
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UT
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taylorsville
Hey Pete..............................wishin you many more anniversaries! I have my 3rd coming up the end of Jan17.

I came into my diagnosis with above average strength and refused to let this curse take me without a fight. Now it has become easier to fail, denial has been my mantra until now. I sincerely hope you make it longer than me cuz I don't wanna bury you first. That and I will need someone to say nice things about me when I kick ( you can lie).

Coming into winter brings us new challenges like finding sunshine when we get to leave our cages, and how we stiffen up in the cold.

It is all about frustration and getting comfortable enuf to throw in the towel.
 
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KimT

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Mark, Why should we wait, if we're still here, to say nice things about you? You always encourage people and you always put a little twist.....or big chunk of humor into your posts. So there! I didn't have to lie.
 

Lkaibel

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Pete, I was so struck by your being told all in the same day that you just could not have it and then that you did. I can so imagine what that had to feel like.

We had such a short diagnostic journey for a number of reasons, not the least being no doubt a classic limb onset and a fast EMG that was suppose to last 30 minutes and went to 2.5 hours. I was not even there because we all thought it was a simple nerve injury. That was May 2nd, and we had our Dx on June 30th. Reading your story, I feel we were fortunate to at least know for sure.

I am with you Pete on the ignorance of the medical community on this one. I mean even what is known so many of them DON'T know. I had to go to the Doctor this week and the nurse asked me about stress. I said Well, my husband has ALS and she said, and I quote "That is really serious, right?". On my way out, I actually asked to make sure the woman I spoke with was a nurse and the desk confirmed she was <headbang>.

Mark, how could we say anything BUT nice things about you!
 

faithandlove

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06/2016
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A big hug to you Pete!

I know how you feel, and I wish there was a cure for this horrible disease.

I try to look for any goods things to say about having ALS, and I found a few things.
1. I have always been a "social butterfly" and my husband has always been shy. Now he is very social and talkative. He has had to take on a new role, and I'm very proud of him.
2. I have observed an outpouring of love from family, friends, and even complete strangers. People smile a lot at me. I went to the DMV recently and a lady (who looked homeless) said I would be with God. Normally I would be polite, but internally feel the person skipped her meds. I did not feel this way. I felt love and caring from her, and I thanked her for telling me this.

We are losing so much because of this disease. Try to find what has been gained because of it. It may help. Believe me, I know this is difficult because I am going super fast, and even have a difficult time typing this reply,

Hugs,
Deb
 

Duker52

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Joined
May 22, 2016
Messages
119
Reason
PALS
Diagnosis
04/2016
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US
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Virginia
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Alexandria
Pete, my heart aches for you. I'm at about the same time mark and it really does suck. Try to keep your spirits up. Just remember you have family here and we all understand.

Bill
 
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