Crazy Weekend!
Well you know how you plan things and sometimes they just don't come out right? Well that was how my weekend went. I Had planned to go to A Pampered Chef party and jewelry party for 2 ladies but Daniel had a bad spell this weekend. We did find out his disease is progressing and he is having circulation problems in his legs. They had started him on some new meds for restless leg syndrom called Requip.
He has been having several things going on such as bad sores showing up on his face,vommiting spells, dizzyness, moments where he just breaks out in a huge sweat, feelings like his face is swelling and numbness on his lips. Saturday my cousin came over to spend time with him which was a total blessing, because Daniel was able to stay on his meds and feel comfortable at home. They played xbox and then Anthony took him to look at Mothers Day gifts. When they got home he said Melissa, Daniel is not doing very well. On Sunday one of the men came and got my mom (an RN) out of church and said Daniel is sitting down on a bench in the hallway and is asking for you, he does not look very good. I ended up taking him home and mom told him to call the Dr. in the morning.
While at home I was flipping the channels and a show came on called Mystery Diagnosis. A lady had very bag fatigue, muscle and joint pain and high fevers. At first they kept telling her it was a virus(same thing they had told Daniel) then I heard them say they diagnosed her with Ankylosing Spondylitis. I was like holy moly and I turned up the TV and planyted myself in front. Well come to find out they later diagnosed her with a different form of Rhumatoid Arthritis that they said was very hard to diagnosed. I totally missed the name of it and now I am wondering if Daniel could have this instead?
If anyone has seen this show and has any information please let me know. I am going to do some searching on the internet. All I know is that it had 3 initials and had an O in it. Something like ASO or AOS or something? I could just pull my hair out for not cathcing it.
He got dizzy and fell this morning trying to get to the bathroom and noone was home but he managed to get up and get to a phone because he fell on his right side instead of his left. If he had fallen on his left he would have been in trouble. I told him to immediately calle the Dr. and they told him to quit taking the Requip because that is the only new thing he has started. So now all we can do is wait and see if this is what is causing all the side effects. This is so frustrating because I stress out that he is at home alone during the day. It is also hard to not try and treat him like a little kid because he is already emotionally stressed and feels that his manly hood has been taken away. Its hard to look at at 35 year old man and actually see a 70 year old body.
On a lighter note before all this happened this weekedn Hubby and I were able to actually go to the movies and see “Push”. So we were able to spend some time together which was a blessing. Ok thanks for listening to my rambling and I hope everyone has a great week.
Praying for you all! Hopefully comming off of this med will help Daniel some. Chan
I’m so sorry about all of this! I wish I had some advice. Just know that I’ll be thinking of you guys.
I’m so sorry about all of this! I wish I had some advice. Just know that I’ll be thinking of you guys.
I’m so sorry to hear about Daniel. Is the disease you saw on TV on either of these pages?
https://www.arthritis.org/disease-center.php
https://www.wrongdiagnosis.com/r/rheumatoid_arthritis/subtypes.htm
My daughter has a form of juvenile arthritis and it’s changed names twice in the two years since she was diagnosed, so whatever you saw on TV could have multiple names too. I hope you are able to get some answers.
Susan
Thank you all for your thoughts, prayers and comments. I have also posted on the Mystery Diagnosis forums on their website so maybe someone will see that.
Thank you all for your thoughts, prayers and comments. I have also posted on the Mystery Diagnosis forums on their website so maybe someone will see that.
Oh my, I am so sorry. I am glad you were able to take sometime to talk to us about this, you are such a strong woman, I will be praying for you all!
Oh my, I am so sorry. I am glad you were able to take sometime to talk to us about this, you are such a strong woman, I will be praying for you all!
Has he ever been tested for Lupus? I don’t know all of his history but the symptoms you listed above could apply…I am still looking at all of my med books to see if I can find anything with an O but so far no luck…
Has he ever been tested for Lupus? I don’t know all of his history but the symptoms you listed above could apply…I am still looking at all of my med books to see if I can find anything with an O but so far no luck…
So sorry to hear that you’re going thru med problems w/your husband. I too have a husband w/med problems that can’t be diagnosed. My hubby isn’t having as rough a time as yours tho. My thoughts are w/you. We’ve been able to rule out a number of things w/the Dr’s by searching on the internet.
Good luck to you.
So sorry to hear that you’re going thru med problems w/your husband. I too have a husband w/med problems that can’t be diagnosed. My hubby isn’t having as rough a time as yours tho. My thoughts are w/you. We’ve been able to rule out a number of things w/the Dr’s by searching on the internet.
Good luck to you.
I am so sorry you guys are going through this it sounds tough. We also had a bad weekend ( got into a car accident) and went to see “Push” as well. Weird. Prayers to you and your family and I hope your husband feels better soon!
I am so sorry you guys are going through this it sounds tough. We also had a bad weekend ( got into a car accident) and went to see “Push” as well. Weird. Prayers to you and your family and I hope your husband feels better soon!
AS is the abbreviation for the ankylosing spondylitis…i’ve seen that show many times but don’t remember that particular episode..one thing i can tell you though, they seem to do reruns on the shows frequently, you might try to set your dvr after checking the tv schedule, i bet it will rerun sometime this week
AS is the abbreviation for the ankylosing spondylitis…i’ve seen that show many times but don’t remember that particular episode..one thing i can tell you though, they seem to do reruns on the shows frequently, you might try to set your dvr after checking the tv schedule, i bet it will rerun sometime this week
Wow, Melissa, I am so sorry for all you and your family are going through. They all depend on you to be everything to everyone. Hang in there, girl! You can do it! Don’t worry if you can’t make it on here every day, just don’t leave us for too long at a time. 😉
Wow, Melissa, I am so sorry for all you and your family are going through. They all depend on you to be everything to everyone. Hang in there, girl! You can do it! Don’t worry if you can’t make it on here every day, just don’t leave us for too long at a time. 😉
After reading some medical books… I think these are possibilities:
Rheumatoid arthritis
Lyme’s Disease
Benign Paroxysmal Positional Vertigo
Lupus
ASO is a test. Antistreptolysin O titer tests for Rheumatic fever (and others) or other streptococcus infections
After reading some medical books… I think these are possibilities:
Rheumatoid arthritis
Lyme’s Disease
Benign Paroxysmal Positional Vertigo
Lupus
ASO is a test. Antistreptolysin O titer tests for Rheumatic fever (and others) or other streptococcus infections
you are on my mind constantly, praying for both of you.
you are on my mind constantly, praying for both of you.
Praying for you all! Hopefully comming off of this med will help Daniel some. Chan
I’m so sorry to hear about Daniel. Is the disease you saw on TV on either of these pages?
https://www.arthritis.org/disease-center.php
https://www.wrongdiagnosis.com/r/rheumatoid_arthritis/subtypes.htm
My daughter has a form of juvenile arthritis and it’s changed names twice in the two years since she was diagnosed, so whatever you saw on TV could have multiple names too. I hope you are able to get some answers.
Susan
Thank you for the continued kind comments I am in awe at those who are taking the time to comment.
Crystal oh my do you think its the movie? do do do do do do do do lol!!!!!!
Thank you for the continued kind comments I am in awe at those who are taking the time to comment.
Crystal oh my do you think its the movie? do do do do do do do do lol!!!!!!
My prayers are with you! I hope all goes well, and you find the answers you are looking for:-)
My prayers are with you! I hope all goes well, and you find the answers you are looking for:-)
I was going to say get the test for Lyme .That little tick can wreak havoc on a body . So many peolpe I know have had it and there is a wide range of problems. I hope everything works out ok and you find what the problem is.
I was going to say get the test for Lyme .That little tick can wreak havoc on a body . So many peolpe I know have had it and there is a wide range of problems. I hope everything works out ok and you find what the problem is.
What a difficult situation for all of you. i am sending out lots of prayers and positive thoughts into the universe for you and Daniel!
What a difficult situation for all of you. i am sending out lots of prayers and positive thoughts into the universe for you and Daniel!
I hope things get better. I will pray for you.
Hope Daniel feels better soon and I am sending my best wishes to him and to you too.
Hope Daniel feels better soon and I am sending my best wishes to him and to you too.
Melissa, I wish I was there to give you a big hug! Prayers are going up for Daniel and your family. God’s Blessings, Candy
Melissa, I wish I was there to give you a big hug! Prayers are going up for Daniel and your family. God’s Blessings, Candy
I hope things get better. I will pray for you.
My thoughts and prayers are with you and Daniel at this time! I hope they find out what is causing this and help you both get back to alittle bit of normalcy….I will pray for you both!
My thoughts and prayers are with you and Daniel at this time! I hope they find out what is causing this and help you both get back to alittle bit of normalcy….I will pray for you both!
Thanks everyone we did stop his medication for restless legs so we will see how it goes. I did find out last night that Daniel and I will be traveling to Florida next week. I can’t tell you why yet its a surprise but I am very excited he gets to go because maybe this would be good for him to get away plus the warm weather will be good for his muscle and bones! I will tell you more when they give me the go ahead!
Thanks everyone we did stop his medication for restless legs so we will see how it goes. I did find out last night that Daniel and I will be traveling to Florida next week. I can’t tell you why yet its a surprise but I am very excited he gets to go because maybe this would be good for him to get away plus the warm weather will be good for his muscle and bones! I will tell you more when they give me the go ahead!
Praying for you and your family.
Praying for you and your family.
I’m so sorry that you are dealing with this right now! I’ll keep you all in my prayers!
I’m so sorry that you are dealing with this right now! I’ll keep you all in my prayers!
Hey! I FOUND IT! (it’s from the show titled “Falling Through The Cracks”)
Antiphospholipid antibody syndrome also known as…(APS)
It’s an autoimmune disease, with similar symptoms to your description. It seems to be more common in women, and one of those that’s really easy to test for (a simple blood draw) but rarely ever IS tested for, if you know what I mean.
Here’s a link to facts about it:
https://www.apsfa.org/faq.htm
Good Luck, God Bless, and know that I’m praying for you and Daniel…
It sounds like Lupus or possibly a variety of Multiple Sclerosis. You didn’t say
When and How symptoms started
If he is constantly debilitated or if he has periods where there are no symptoms.
Lupus has a “tell tale” rash in about 60% of cases which take a butterfly formation across the bridge of the nose and cheeks . Are those where his facial sores are ?
What are All his symptoms ?
What diseases have been ruled out ?
Has he had an MRI of his brain ?
Does he have any strange marks ( circular) on his chest or back area that don’t go away ?
The facial numbness and tingling sound like anxiety ( who would blame him ) especially if they come on when he is feeling particularly stressed , I’m not sure I would immediately include them as symptoms for the underlying disease.
My husband and I have about 23 years medical experience between us and are usually spot on with the weird stuff . Feel free to respond via email if you ike
God Bless
Well the symptoms he has other than those side affects from that drug is joints are fusing together etc. He has already had a hip replacement on his left side, can’t sleep, cold sweats,fusion of the spine, degenerative joint disease,neck spurs he was tested and has the HBLA gene. He was diagnosed back in May of 2005. Be sure and read the About us section for more details.
Well the symptoms he has other than those side affects from that drug is joints are fusing together etc. He has already had a hip replacement on his left side, can’t sleep, cold sweats,fusion of the spine, degenerative joint disease,neck spurs he was tested and has the HBLA gene. He was diagnosed back in May of 2005. Be sure and read the About us section for more details.
Hey! I FOUND IT! (it’s from the show titled “Falling Through The Cracks”)
Antiphospholipid antibody syndrome also known as…(APS)
It’s an autoimmune disease, with similar symptoms to your description. It seems to be more common in women, and one of those that’s really easy to test for (a simple blood draw) but rarely ever IS tested for, if you know what I mean.
Here’s a link to facts about it:
https://www.apsfa.org/faq.htm
Good Luck, God Bless, and know that I’m praying for you and Daniel…
It sounds like Lupus or possibly a variety of Multiple Sclerosis. You didn’t say
When and How symptoms started
If he is constantly debilitated or if he has periods where there are no symptoms.
Lupus has a “tell tale” rash in about 60% of cases which take a butterfly formation across the bridge of the nose and cheeks . Are those where his facial sores are ?
What are All his symptoms ?
What diseases have been ruled out ?
Has he had an MRI of his brain ?
Does he have any strange marks ( circular) on his chest or back area that don’t go away ?
The facial numbness and tingling sound like anxiety ( who would blame him ) especially if they come on when he is feeling particularly stressed , I’m not sure I would immediately include them as symptoms for the underlying disease.
My husband and I have about 23 years medical experience between us and are usually spot on with the weird stuff . Feel free to respond via email if you ike
God Bless
Hi…I’m 48 y/o and have Ankylosing Spondylitis(AS) , I understand your husband pains. AS symptoms are a little different from men and women..If you are coming to Florida soon I can recommend my doctor. She was the one who really heard me and found out the condition. And about your question, I didn’t see the program but I know that Lyme disease has similar symptoms as AS. Also Lupus and Multiple Sclerosis. Actually, I’m in MTX and Humira treatment. Also taking Relafen and some pain killers for the worst days…If you have any question or just want to talk, please don’t hesitate and email me.
Maria
PD Excuse my english, isn’t my first language
Hi…I’m 48 y/o and have Ankylosing Spondylitis(AS) , I understand your husband pains. AS symptoms are a little different from men and women..If you are coming to Florida soon I can recommend my doctor. She was the one who really heard me and found out the condition. And about your question, I didn’t see the program but I know that Lyme disease has similar symptoms as AS. Also Lupus and Multiple Sclerosis. Actually, I’m in MTX and Humira treatment. Also taking Relafen and some pain killers for the worst days…If you have any question or just want to talk, please don’t hesitate and email me.
Maria
PD Excuse my english, isn’t my first language
Thank you!
Thank you!
hi. your husbands story sounds devastating- i cant remember the name of the condition you are talking about- but i believe i did see that episode. have you taken him to an endocrinologist, a rheumatologist or even to see an accupunturist? there is some good in chinese medicine too- otherwise a clinic that is good at recognizing rare illnesses is the mayo clinic in minnesota- people travel from other countries to go there- they see so many different things that they may be able to help him- please email me and keep me updated– if i think of the name of that condition i will get back to you.
hi. your husbands story sounds devastating- i cant remember the name of the condition you are talking about- but i believe i did see that episode. have you taken him to an endocrinologist, a rheumatologist or even to see an accupunturist? there is some good in chinese medicine too- otherwise a clinic that is good at recognizing rare illnesses is the mayo clinic in minnesota- people travel from other countries to go there- they see so many different things that they may be able to help him- please email me and keep me updated– if i think of the name of that condition i will get back to you.