This is my Daddy. He raised me, long ago when dads didn't normally get custody-but he did!
He let me barf on him, put bows in his hair and pick out his grey hairs (which I probably caused in the first place). Words cannot describe how much he means to me, and watching him suffer has been truly gut wrenching.
We do not know what is wrong with my dad. We need to know what is wrong with him. He has been going to doctors for so many years, so many doctors for pain that he has had and countless surgeries that never helped anything. One day, he was messing around on facebook and clicked a link about MS. Something clicked with him, when he read that article, that maybe all his weird symptoms are all related. He never really had gone to just one doctor for all the ailments before. He immediately made a doctor's appointment and began trying to get to the bottom of this. We aren't saying he has MS-but he does have SOMETHING. We just don't know WHAT.
Needless to say, one doctor's appointment turned into a few doctor's appointments with specialists with long gaps of time between (specialists take forever to see) and so far, nobody has had any diagnosis or even an inkling of what is wrong with my dad. We are begging someone to please care enough to look at his case and help figure it out. He has gotten so much worse in just a year, I am scared that whatever he has may be irreversible and if we wait too long the effects could be devastating. If this could all be treated or cured in some way, we would love to know-and if it can't, we STILL want to know!
This video is of my dad explaining his symptoms...
At least the ones we thought of whilst sitting there talking to the camera. Since we filmed, he probably has remembered a few more that we left out. He isn't a complainer, he doesn't want to burden people with his troubles, he isn't asking for anything for free-he just wants to find a doctor that is willing to help him get to the bottom of this. He does have insurance and can travel (with the help of his loved ones) anywhere in the US.
I am just hoping that this might click with someone somewhere. Maybe someone can share it with a doctor that specializes in this kind of stuff, or maybe just share with me the information of a doctor that may be of help to us.
Chronology of Information/symptoms as best of his knowledge (please excuse the poor formatting, but it was a copy/paste and facebook didn’t like it. I hope to edit it when I have time).
Age 5. - 1958 –I had mono. Epstein Barr virus antibodies are believed to contribute to MS symptoms later in life. Age 8 (or 9)-had an appendectomy
Age 10. - 1963 – Tremors started and continue to this day.
Age 14. – 1967 – Earaches with no sign of infection and eardrum damage. No wax buildup. Doctors can find n reason for the earaches. Continues to this day. (Common among MS patients.)
Age 14. – 1967 – rapid heartbeat and irregular EKG. Common with MS patients. Continues to this day.
Age 25. - 1978 – Tiic Dolorous started. (More common among MS patients than the general population.) Attacks frequently are accompanied with pain behind eyes, blurred vision, and / or double vision. Continues to this day.
Mid 20’s. – About 1980? – Began having serious gum disease. Quarterly visits to dentist for deep scraping/cleaning did not help. Kept loosing teeth until I gave up and had dentures put in.
Age 30. – 1983 – High blood pressure. Continues to this day even after deliberately losing 80 pounds and modifying diet. (Common among MS patients.)
Age 40. - 1993 – Developed symptoms similar to carpal tunnel syndrome. Had bilateral carpal tunnel surgery. No relief. MS can cause pain, numbness, cramping that mimics carpal tunnel syndrome. Many MS patients are miss-diagnosed with carpal tunnel syndrome.
Age 41. – 1994 – Ulnar nerve issues. Surgery with no relief. Same issues as carpal tunnel. See above. Continues to this day.
Age 55. – 2008 – Balance issues. Stumbling, falling, numbness in feet and legs. Pain in both upper arms – constantly! Continues to this day.
Age 57. – 2009 – slurred speech. Continues to this day.
Age 62. – 2015 – An hour or two in sun and I am totally exhausted. Legs collapse. Fall. Cannot walk. (I was hospitalized for this in 2015.) Elevated creatinine levels (common among MS patients.) Occurs periodically to this day.)
Currently – Chronic exhaustion. Daily periods of double vision. Lack of balance. Frequent falls. Although I can hear fairly well, I always have the feeling that one ear or the other is plugged up. Pain in upper arms never goes away. Numbness in feet, legs never stops, and right forearm numbness never stops. Hands frequently cramp up.
Hi, a bit late but I came across your blog via a hat pattern on Ravelry. You may already have solved this, had lots of input or you may already know about this person. Google Terry Wahls TED talk for a start she is an amazing lady. She has her own website too. She healed herself from bedridden MS to cycling walking normal life. She still has MS she lives with it but a normal life. Hope this helps.
ReplyDeleteShe is speaking in Illinois Jan 20th http://littlevillagetickets.com/events/50724368/build-your-microbiome-with-dr-terry-wahls may or may not be of use to you. Even if it isnt MS the protocol she designed and followed has been helpful to others too.
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