trichothecene poisoning or ALS

[Heather H.]

No, I really wish he was.

 

[grantst44]

Stay calm

My husband was diagnosed about a month ago but has had symptoms (progressing) for over a year. He had many tests which took about 6--7 months. His speech is getting really bad but he is still working full-time. In the last year and a half, he's gone from about 180 pounds to 138 pounds. We are praying for God to heal him as well as for our hearts to be prepared for whatever happens. He is 62 and his sister died of ALS at about 50. I know it seems that this doesn't give much hope but I believe there is hope. The doctor prescribed speech and swallowing therapy. He is drinking protein shakes for supplements. We are working on keeping him as healthy as possible. There are benefits through Social Security and also VA just authorized for veterans of armed forces. My heart goes out to all here but I've had to practice "not to panic" and it helps. I know it's psychological but it does help my husband too.

 

[Heather H.]

I called several infectious disease doctors but they refused to take his case because of the ALS.

 

[Heather H.]

I finally have some good news! We have found a Dr. who listened to us about the toxin in my husband's blood, and that he MAY NOT have ALS. What happened was that blood tests were done on him and it was discovered that he has very low levels of vitamin D. Several months ago I was told that I have no vitamin D in my body. Because this has happened to the both of us, eyebrows were raised and we have been refered to the infectious disease center at Vandi.
Finally! Some proof that something else is wrong with my husband.

 

[brooksea]

Heather, I am so glad you found a doc that would listen to you. I know your frustrations must have been immense!

I hope you will keep us informed of what you discover through the infectious disease center. This could be helpful to others.

Good luck to you both!

 

[Heather H.]

Time is running out for my husband. His pain level is now off the scale, both shoulders feel like they are dislocated, his legs are always alarming cold and discolored and swollen. Every doctor blew us off because of the ALS and ignored the fact that I was now showing similar symptoms from time to time. I was told that it was the result of accute stress, in my head and depression, "take these anti-depression pills and you will be fine and accept the fact that your husband is dying."
No way in hell would I do that! I started a quest to find something in the medical records of the past 3 years that could account for what was happening to my husband. I created a timeline of odd occurances and findings and statements from doctors that showed that something was wrong but no idea what it could be.
Healthy before we moved down here, has a mild heart mummur called MVP
Hurts his right foot in a fall, limps for quite a while
Mummur gets worse for some reason, the idea of surgery is floated for the first time to be done 6 months or so in the future
He goes into congestive heart failure with 6 broken "cords", it was repaired and the surgery was flawless, warned to watch for Afibs
Afibs happen 9 times in 4 months, all brought under control, no longer needs warfin
Fevers of 105-106 happen 4 times with no reason why, limping has gotten worse, starts to occur in left leg
Begins falling and the pain starts to build
Several CT scans, MRI's are done, strange things were found, hot spots, calcified unreadable areas of the spine, sinus troubles and things
Refered to an ALS doctor, who would not listen to us when we said my husband was a lifelong studder and that his right hand had been broken years ago and had not healed right so there was some loss of feeling there.
We are told that he has ALS, has 5 years to live and get your affairs in order
No more tests were run, everything stops, and we were blown off