Old 10-26-2015, 04:50 PM #1 (permalink)
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Default At NIH, newbie!

Hi all,

My husband John and I are currently laying in a hospital bed at NIH!

Our journey started 4 1/2 years ago in the spring/summer of 2011. John grew up on a ranch in West Texas and worked as a geologist in the Oil Fields. He played baseball, football, and wrestled growing up. In 2011 he noticed his feet felt heavy and uncoordinated. He began to fall. His balance was very wobbly. In the winter he had to use crutches (he wouldn't use the cane I had). He fell facedown on the street downtown crossing for work. He felt weak. He gave in and used a cane. Over the next year his legs felt weaker but he did not lose muscle. He can regain muscle and is still strong. He felt his arms being effected. We saw our therapist at first thinking it was the stress of getting married and having our daughter. It clearly wasn't. We then saw specialist at UTSW in Dallas. They weren't exactly sure either. We had blood work, MRI's, CT Scans, PET scans, everything under the sun done. John also suffers from an immune deficiency he has had since childhood. They thought the Neuro symptoms could be related. We went to Mayo. We stayed for 9 days and loved it. The neurologist Dr. Pittock wasn't 100% positive what it was. They did al the normal scans, LP's sweat tests, EMG, & nerve conduction study. Everything looked relatively normal. One doctor at Mayo thought it could be PLS but it was to early to tell. We went to NIH twice.
Things progresses over the next 4 years. John's arms and hands are effected. In the last year he has lost his voice. He can say a few words but it is very hard for strangers to understand him. During this time we had our 2nd daughter. We planned her b/c I couldn't imagine leaving the first one an only child. I feel like they will need the support of a sibling.
John has some trouble swallowing but no diet changes yet. He just chews slow and takes small bites. I reached out to Mayo and NIH a few months ago b/c I wanted to try to get seen again. Over the last 4 years we have tried chemo, IVIG, Apheresus, plasmapheresis, many other things with no luck.
We are impatient at NIH for a week. The EMG was today. She thinks PLS. My heart broke. It seems like even though you look for answers for years, you really don't want to hear them. We are thankful it is not ALS. But we are sad because we know there is no magic pill or cure. My heart breaks for my husband. He uses a walker full time now and a scooter for long distances. He has a Lingraphic speech devise that he uses. It has eye gaze if we need that in the future. He mostly types on his phone. The speech issue bothers him the most. He hated not being able to communicate fast and effective with ppl. He is on disability and does PT twice a week, speech twice, & OT once.
I'm not happy to meet you all under these circumstances but I am glad you all will understand the tough road ahead!
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Old 10-26-2015, 06:42 PM #2 (permalink)
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Default Re: At NIH, newbie!

Martha, I moved your post here so you could get more responses, initially. Sorry to welcome you and for the long diagnostic journey, but we will all help however we can. You have several fellow Texans here and I believe at least a couple use Dallas clinics.

Best,
Laurie
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Old 10-26-2015, 07:07 PM #3 (permalink)
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Default Re: At NIH, newbie!

So sorry to be welcoming you Martha, what a long journey to a diagnosis no one wants!
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Old 10-26-2015, 09:27 PM #4 (permalink)
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Default Re: At NIH, newbie!

Welcome here Martha. Sorry that you and John are here. Sorry too that it was such a long road to get here. Hope you both find lots of comfort and support here. This forum -- and its people -- is simply amazing. Hugs. Cee. x
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Old 10-26-2015, 09:53 PM #5 (permalink)
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Default Re: At NIH, newbie!

Welcome Martha, So sorry you have had such a long road to diagnosis. My husband was diagnosed three months ago. We also live in Dallas. We go to Texas Neurology. You can rest assured that anything you need to ask or say here is very welcome and you will get amazing support. The beautiful people on this forum have helped me to stay sane so many times. Dallas hugs to you.
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Old 10-27-2015, 03:45 PM #6 (permalink)
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Default Re: At NIH, newbie!

Martha, you write that your heart breaks for your husband. I can't imagine how hard this all is, with a young family. You are in my thoughts and prayers. I can identify with John in losing one's voice being the hardest loss of all. I'm sorry your lives have become burdensome and so very challenging. I hope and pray you may still find joy in life, in your children, in your love for one another. My ALS journey has been a swift one, but my husband and I have drawn so much closer through it. Together, we look for things to be grateful for, things to do that bring us joy, people to be with who understand and care, and books to read, programs to watch that uplift and comfort. I'm sure with your young family and your husband's care, you don't have much time to yourselves. Do you have help and support from others? Please be assured that the people on this forum understand in a way that others cannot. There is a wealth of wisdom and information here, so I hope you come back to visit us.
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Old 10-27-2015, 07:54 PM #7 (permalink)
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Default Re: At NIH, newbie!

What a wonderful response Charlene. I agree with everything you said! You make this forum a better place by your participation.
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Old 11-01-2015, 03:34 PM #8 (permalink)
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Default Re: At NIH, newbie!

Thank you for all your kind words and encouragement! We flew home Friday arriving at midnight in Dallas. Our trip to NIH was amazing. I love all the PPP working on John's case. We have an appointment at Mayo in November. John is on social security disability and received Medicare. It looks like Mayo doesn't take Medicare assignments. I'm thinking we will have to pay out of pocket (as if that is possible). The first trip to Mayo 3 years ago John had United through his previous employer. Has anyone been to Mayo on Medicare?

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Old 11-01-2015, 04:51 PM #9 (permalink)
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Default Re: At NIH, newbie!

A belated welcome! And sorry for the diagnosis. I have not been to Mayo but believe you are right that for out of state people they only take medicare for labs. May I ask your reason for going back? Are you seeking another opinion? Depending on the financial strain could you consider going somewhere else that does accept Medicare fully?
It sounds like you had a strong opinion from NIH if "she" was Dr Floeter? She is as you no doubt know a leading PLS specialist. Not to say you should not seek another opinion of course if needed
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