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zulalily

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05/2012
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I have visited this site for information several times, but this is my first time to write something. My husband retired two years ago at 58 after 30 years in manufacturing management so that we could start our own small business. I had had many health issues over our 40 years of marriage, but he had always been very healthy. Around the first of this year, he started complaining of general weakness in his thighs and upper arms. He also started losing weight and having difficulty lifting anything. His muscles lost all of their mass in his upper arms and legs. He was finally hospitalized in May by his primary care physician who had no idea what was wrong with him.
He was seen by a couple of neurologists in the hospital and given the muscle test with the needles. He had a complete work-up of blood tests and some scans and MRI's. The day he left the hospital, one of the neurologists came in and told him that he felt like there was a 60% chance that he had ALS. He has had a muscle biopsy that we hoped would show myositis, a possibility suggested by my rheumatologist, but the biopsy seems to have ruled out muscle inflammation.
He has lost about 45 pounds, he can't lift his legs, he is having some tingling and numbness in his hands and feet, he walks with a strange gait that the doctors call a "waddling gait". He can only lift the very lightest objects and his neck muscles are so weak that he has to lean his head back against something to keep it from falling forward. I had hip replacement surgery in June (I tried to postpone it, but I literally couldn't walk and our daughter insisted I go ahead with it so that I could recover) and that postponed our ability to get him to a specialist.
Our plan right now is to get him to the ALS Clinic at Vanderbilt Hospital (we live in Chattanooga). If you have any other advice for us, it would be greatly appreciated!
 

ottawa girl

Moderator emeritus
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Jun 14, 2012
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04/2012
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Hello and sorry to read your post. That's a lot to face all at once.

Hope your new hip is working for you. (your daughter gave you sage advice - you must look after yourself too!) You have come to the right place for help and support. I don't know enough about ALS yet to suggest anything useful to you, but I can tell you without reservation, that my husband's and my family's love and patience are sustaining me during this scary time. I am certain the more experienced folks around here will be more helpful to you with practical advice. I will, however, add you to my prayers. Just wanted to assure you that you are not alone.
 

WellsRuby

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Loved one DX
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03/2011
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Texas
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You made the right decision about your hip replacement. I'm fairly new to this forum too but have found a wealth of information and support from this forum and you will too.
 

HelenL

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Hi zulalily, sorry that you find yourself here. Definitely get to a clinic asap.

The one thing that struck me about your hubby's issues is the numbness and tingling in his legs, and the weakness in his neck so soon after his leg weakness, do not seem to fit the typical pattern for ALS. Does he have issues with swallowing, talking or in his arms? IF the neuro is saying 60% chance, was that based on the EMG test (needles)? You should get the tests from the docs to bring with you to the clinic, the EMG will detect issues long before we're aware of them.

Good luck, and hoping that the 40% comes out on top for you.
 

zulalily

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05/2012
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US
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TN
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Chattanooga
Thanks to ottawa girl and WellsRuby! I appreciate your kind and welcoming words. This is a dark time in our lives and my husband gave up super health insurance when he retired and now we pay for our own health insurance and it is not nearly as good. He was scheduled to have a full body CT scan this morning--the last thing the doctors here in Chattanooga were going to do (to try to make sure they had not missed a cancer or someting else really big) before sending him to the ALS Clinic in Nashville. The hospital where he was to have the test called just before we were leaving home to say the insurance company had not approved the test yet and it had to be postponed. I suppose there are other people on this site who have had this kind of experience.
 

zulalily

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05/2012
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Thanks, HelenL. He is having weakness and muscle wasting in his arms. This morning, he described the feelings in his hands and feet that are becoming more pronounced this way: He said that when he wants to move his hand or foot, it doesn't immediately just move; instead, he has to think hard about it and then his hand sort of locks up and moves more slowly. He did continue to say that there is some numbness in his feet. If anyone thinks this sounds like another disease and not ALS, then we would love to hear your ideas. So far, he doesn't have problems with talking or swallowing.
 

edwards5257

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Jul 16, 2012
Messages
159
Reason
Learn about ALS
Diagnosis
00/0000
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KY
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Paducah
Zulalily, I can relate to the extreme weakness and heaviness of legs/arms. ALSO, extreme weakness in the neck area. I too wonder if I should have a full body scan but I am sure the insurance company prob. won't approve that also perhaps. I worked for the state and have decent retirement ins [which has covered all my tests thus far well] but have wondered about cancer also perhaps. I do have swallowing issues though which compounds to my fear. So far voice is o.k. it seems. This is scary for you and for me & many others. I will wish you luck at the ALS clinic in Nashville (I had thought I would go there to Vanderbilt, since I live in KY) but my local neurologist wanted me to go to St. Louis for my second opinion with an ALS specialist. Wright says it is top notch so I will maybe get some answers on 07/26/12 and beyond. Oh, I too find it difficult to lift heavy things, but can still do it thank goodness. Best!
 

zulalily

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Thanks, edwards5256! I know where Paducah is and I wonder if the doctor in St. Louis would be better than going to Nashville. My husband and I grew up in West Tennessee near Paris, so you live in our neck of the woods. Yes, the weakness in the arms and legs and the atrophy of his muscles were my husband's very first problems.
 

momap53

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Joined
Jul 2, 2011
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Welcome to the forums zulalily. Sounds like you guys are having some really tough times. Hope the insurance approval comes through soon so that you can move on. We have several members who have been to Vanderbuilt and can give you more info.
 

edwards5257

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Good posts friends! Tough times for sure, Vanderbilt should be o.k. hopefully. Paris, ahh , know where it is located well. Maybe we BOTH will get some answers soon at our appointed destinations for second opinions, maybe that full body scan will come through for you soon also!
 

zulalily

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Jul 16, 2012
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05/2012
Country
US
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TN
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Chattanooga
Thanks, momap53! Yes, I would love to hear from some people who have been to the ALS Clinic in Nashville. Of course, we will take all of the tests from here in Chattanooga and, hopefully, all of them won't have to be repeated. Because of our mounting medical bills, our daughter and her husband, both attorneys in Atlanta, are starting the procedure for my husband to get social security disability. They have checked into it and say that ALS is on a list of diseases that automatically pay, but we are most concerned with getting the health care (the medicare) for my husband.
 

zulalily

New member
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Messages
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05/2012
Country
US
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TN
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Chattanooga
edwards5256, I took note of your date (7/26) to go to St. Louis and you will be in our prayers!
 

edwards5257

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Messages
159
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Learn about ALS
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THANK YOU so very very much, I appreciate that also! While I can still function it is so hard and I live alone (widowed). I keep telling myself maybe I need to get prepared for that ALS diagnosis that I have feared since Feb (kind of like your husbands, when it all started). I have also heard that ALS auto qualifies you for SSI, keep us posted here on your husband. I may not have access to a computer (not alot) for approx. 9 days but will keep up with things when I can get back.
 

panguinjen

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Welcome zulalily and edwards,

You will find a lot of support and answers on your journey. Keep us posted about your visits!

Jen
 
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