weird symptoms – anyone had this?

[patti]

Mom’s MDS is definately progressing. Both the doctor and I can see it (although mom refuses to but that’s another story). Mom has started having some numbness in one or more of her fingers and sometimes her thumb turns black (not like a bruise- I mean part of it will be charcoal black). Has anyone ever experienced this or know what’s causing it? The doctor didn’t have a clue today and all she could think of was maybe heart/circulation related. Mom isn’t having any sort of shortness of breath or chest pains.

Anyway, if anyone has any idea what this could be or what I might be able to look up on the web to find out what it is I would greatly appreciate it. It’s very disturbing to mom as she sits for hours watching her thumb turn black and her fingers be numb.

Thanks

patti

[Caroline]

Hi Patti,

I don’t have any answers but I had the same question. When I spoke to my Dad yesterday he told me that lately both of his hands go numb while he is sleeping. He said that it isn’t a tingling or pins and needles like what you would find with Carpal Tunnel. He said that his hands just go dead. He has to get up several times every night and shake life back into his hands.
I was planning to mention it to Dad’s Oncologist at our next appointment. If Dr. says that it is MDS related, I will let you know.

About the denial…..my Dad and Mom told me for 2 long years that Dad has a ‘little blood problem’ when he had MDS. I am 42 years old. Last week I was at the doctor’s appointment with Dad when we were told that his blood has changed and he now has CMML and needs medicatiion. He has become extremely quiet and he seems much more exhausted than before….but we still don’t discuss it. He lays down for about 18 hours a day sometimes even more.

Caroline

[gemloyear]

Patti, Did her dr. order any tests to see what is causing the numbness and black thumb. It could be something with her circulation that could be very serious. Insist on necessary tests.
Ellie

[Caroline]

Patti,

I just asked my Dad some questions about his numbness.
It was much worse a few weeks ago. The only thing that has changed over the past few weeks is the dosage of his blood thinners. He used to be on a very high dosage and they cut him down to one third of his regular dosage. Dad has been on blood thinners for many years because of a heart condition. He says that the numbness is not as frequent now but it still affects both hands daily always when he is at rest.
Still, I will ask at the next Dr. visit and let you know what he says.

Caroline

[patti]

Caroline,

I think I may have hit on something last night. There is something called Secondary Raynoud’s (not sure of that spelling) Syndrome. It is caused by reduced blood flow to the extremities and sounds very much like what my MIL has. Can your dad shake the blood back into his hands? My MIL cannot. She just has to wait out the hours it takes to get the feeling back. Although the web information says the skin can turn blue I’m guessing that mom’s turning black is caused by blood pooling in her thumb and the vessels being so constricted it cannot flow back out of the thumb.

Secondary Raynoud’s is usually caused by a connective tissue disease but not always. It is always related to something being wrong in the person’s blood vessels (which would be the case with MDS patients). There really isn’t any treatment that would help in MDS patients with this syndrome unless they have the underlying connective tissue disease (ie. lupus, rheumatoid arthritis, etc).

Ellie, we are not actually going to pursue anything with regard to this particular symptom. We can tell it has to do with blood flow and heart function but there really isn’t any reason to do anything. She’s too low in blood volumn to be able to do anything meaningful with circulation. We were mainly just curious what this was.

I’m glad to at least hear mom isn’t the only one with it. My general feeling is that it’s the result of the end of this disease coming.

Thanks Caroline for sharing about your dad. Sounds about like the same thing. It would sort of make sense that your dad’s has gotten worse with less blood thinner because that would keep the flow of blood to his extremities very smooth. Removing the thinner would muck things up a little bit.

Best wishes to your family. Isn’t it funny that our parents still treat us like little kids sometimes? Of course, this is my MIL so I’m not sure I can claim that.

Patti

[shirlsgirl]

Patti,

You wrote:
“Ellie, we are not actually going to pursue anything with regard to this particular symptom. We can tell it has to do with blood flow and heart function but there really isn’t any reason to do anything. She’s too low in blood volumn to be able to do anything meaningful with circulation. We were mainly just curious what this was.”

I think Ellie offered VERY valuable advice. What does your MIL have to say about this? Perhaps she would prefer to seek a doctor’s opinion?

In case you have forgotten Caroline’s father is experiencing some numbness too. So, you feel your mom is at “the end of this disease” and then you are insensitive enough to say that you think Caroline’s Dad has the same thing??! Well, considering you aren’t a doctor and you haven’t done any tests and you don’t even know Caroline’s Dad I wouldn’t go ahead comparing.

Hope your mom find’s some answers soon…hope things improve.

[patti]

Whoa. Wasn’t trying to be insensitive. I was speaking strictly about my MIL. I don’t remember saying Ellie’s advice wasn’t valuable, just that mom probably wouldn’t pursue it with her doctor because that’s how my MIL is. (And BTW, we have already mentioned this to the doctor yesterday, she didn’t have a clue what the numbness and black was and the doctor had no intention of pursuing anything either).

Caroline, I certainly wasn’t trying to determine where you’re dad is at. Mom and I can tell where she’s at from where’s she’s been. Raynoud’s syndrome would be different for someone whose already been on blood thinners because there would have been other factors involved (ie, heart – if that’s what the blood thinners were for or whatever).

Good grief, shirlsgirl. Sorry if I didn’t dance on egg shells for everyone around here. Mom and I are very much realists because we have to be. If you have read anything about mom/me you’d know she and I have other things to take care of besides this disease. So when I say we feel like it’s the end of this disease, we feel that way for my MIL – not for anyone else just because they might have something similar. Someone elses circumstances could be very different (ie. heart problems or something). Please, I was just looking for information and then sharing what I found about a topic.

People have to learn to eat their own meat and spit out the bones. If it doesn’t apply then don’t take it personally. A lot of people have disagreed with me about how I think this disease ought to be treated but I’m not running around with my feelings hurt.

And Caroline, I am really sorry if how I said something was hurtful. It was certainly not intended.

Patti

[Caroline]

Oh Boy,

I think that everyone is scared in their own way and sometimes it comes out by bickering. We need to take a step backwards and everyone’s offended feelings need to be re-assessed. We all have searched and have found each other. I think we must all try to understand that none of us have the answers. We are all looking for peace from the fear and the unknown and we need the support each other to get through this. Speaking for myself…this is the hardest thing I have ever gone through. I am scared to death. Besides Dad’s CMML, Mom has a life threating conditioning which will kill her very soon if she doesn’t have surgery ASAP. I cry day and night when I am not actually being distracted by running a house and a family. I need you guys. Please don’t take things wrong.

Patti, I appreciate your input. I did not take your comments regarding your MIL being at the end of her disease to include my Dad. I already know that his disease transitioned this past summer so his CMML is very new to him. His Oncologist sees him every month and monitors him closely. I was trying to tell you that Dad mentioned his numb hands while we were filling out his Pre-Op Questionaire the other day for Kidney Surgery at the end of October. I found it odd that when I got home from his house and read this forum, you mentioned your MIL’s hands. Both people could very well have different reasons for their symptoms but it seemed odd so I decided to share my news to you all. Dad’s hands are better these last few weeks since they reduced his blood thinners. And yes Patti, Dad is able to shake life back into his hands and fall asleep again but shortly afterwards they wake him up and the cycle begins again.

If you, Patti, consider that you MIL is at the end, then that is your peace. I wish I was the type of person who could rest and allow things to take their course rather than be the type of person who I am who keeps looking for new answers even after I have been told what the real answers are.

I am thankful to every one of you who has supported me for the past week and a half. I am an only child and I felt like my life was ending when I first found out that Dad’s ‘little blood problem’ was CMML. I have a husband and 3 teenage children but I am still very attached to my parents. If you watch ‘Everybody Loves Raymond’…we are just like them!!!! We live 2 blocks from my parents and we see them everyday. My MIL lives a mile away and we see her everyday too. We don’t socialize much. I needed to find friends outside of my family who I could talk to and share these terrified feelings with and I feel that God led you to me. I don’t get offended by anyone who is trying to help me or give me advice. Sure, some things are going to sting. I feel overwhelmed with fear when I read some of your stories because I know that down the road, my family will have to experience those same trials but I also know that you are all there and will do your best to help me through them.

Shirlsgirl….I thank you from the bottom of my heart for being sensitive enough to care about how I, a complete stranger, may have taken a comment. In this world where every man is for himself, I find myself in a warm, caring environment.

Elle…I think the way you do. When I find something that looks odd or suspicious, I start looking for the answers. Alot of people call me over-protective but it is just my nature. I have insisted that Dad tell his Oncologist about the numbness in his hands and he said NO…so I decided that I will mention it myself when we go. He gets his first Eprex shot on Thursday or Friday and Mom is taking him. I get to go the next time so I will mention it then. In my head, I NEED to ask.

We all have different situations and backgrounds. Somehow we all ended up here. In alot of our cases…WE are all we have as support. I know that is my case.

Sorry I babble so much. I am generally VERY quiet but I type quickly and I have alot on my mind these days.

Let’s continue our mission of helping each other and those we love.

Caroline

[patti]

Caroline,

I’m glad you understood my original intention. It is so hard when our parents grow old and begin to get ill. Our family is very very close to my in-laws and we also only live two blocks away from her so I can really understand what you say about seeing them/talking to them daily. You are in a tough spot because it sounds like your folks don’t tell you everything. I’m in a tough spot because I have to know things that sometimes I’d rather not know. I am mom’s caretaker.

I understand what you mean about needing to search for answers. That’s why I asked the question I did, because I’m a seeker also. Mom just approaches her disease differently in that she wants to understand what is happening but she won’t necessarily treat it. Besides, there really is no treatment for the numbing – at least not hers.

I’ve been forced to become a realist this past year because when mom goes home to the Lord I will have to take on the care of my husband’s sister who is retarded. With 3 small (7 and under) kids that I homeschool and a home business that I help my husband run, you can imagine the amount of anxiety that gives me. Mom does her best to also be realistic so she can prepare me as timing dictates for the different things I will need to take care of. She never feeds it to me all at once. Just a little more each time she sees changes in herself. The numbing/blackness was one of those changes. She’s trying not to overwhelm me (or herself trying to remember everything at once). So as I said earlier, you can see why we have to look at things a little differently then some.

I hope your folks will begin to open up with you more. It helps to know what’s happening to them, I think.

Hope the procrit works for your dad. Mom just started it again too.

Patti

[Caroline]

Patti,

You run a Traditional house. I do too.

You have your hands full, Patti. 3 children under 7. Mine were 3 under 3 years old. My children are old enough to help out now, thank God. 2 of them have taken a year off university so they are working but they are here to help us out the rest of the time. You are still needed around the clock. I found those days hard enough when there were no illnesses, nevermind when I was needed elsewhere. I tried homeschooling but ended up sending them up to school. My husband also has a home-based business. Now I have one too selling yarn on-line. It is a pleasant diversion.

You will never be given more than you can manage. I know when you look at the entire picture, you think…Wow, I can NEVER handle all of this. But, I think we are matched to our circumstances according to our strength. I am guessing that you are mighty strong. I’m not trying to be nosy, but I assume that you don’t have a father in law ?

My parents will NEVER share with me unless I pry. They are very Old School European and their job is to protect me from the world….while I am trying to protect them. It can be very interesting listening to some of our conversations as they skirt issues and I press for details. That is why I likened us to the people on “Everybody Loves Raymond”. We sound just like them sometimes but in a loving way. In the end though, I wouldn’t ask for anyone else to be my folks. We have an understanding and somehow this all works for us.

Have a nice day everyone,
Caroline

[Donna]

I LOVE Everyboy loves Raymond, in fact I’m buying all of the dvd’s. I think in life there’s a lot of things that are completely out of our control. I can relate to a little bit of what everyone has said. Everyone has a story. I lost my first husband when he was only 33 (aids) which was kept a secret from me, I had 4 children at the time, my youngest 3 months old and my oldest was 9, she is disabled. I thought that was the end of my world. Thank God the virus was not passed on to myself or my children.
I’m now remarried and have had a 5th child, who I homeschool.

When Mom was diagnosed everything happened so fast, diagnosed in April and she passed away in August, although I was accepting of her death, I knew the disease was going to win.
It has certainly hit me now. I can’t talk to her anymore, can’t call her when something is bothering me, kids can’t have Christmas Eve with Oma anymore, she was very young – 62. Anyway, I’m not sure what my point is here, don’t really think I have one and I’m rambling. Mom didn’t want to be treated any differently she wanted her days to be normal, didn’t want to seek any treatment just had her regular transfusions, she didn’t even want those (she hated hospitals and dr’s) we had to talk her into going.

All we can do is live each day and take what’s handed to us, you never know what’s going to come your way.

I apologize for rambling,
Take Care Everyone,
Donna

[Caroline]

Hi Donna,

A fellow rambler. In person I am as quiet as a mouse but give me a keyboard……

I am so very sorry for what you have been through!!! Like I said before, we all have a story to tell. Somehow each thing that we go through is supposed to be a lesson for ourselves or for someone else but how do you justify some of the things which we have to endure? I cannot imagine myself having to have gone through what you have and yet…you made it Donna.

I don’t know what your beliefs are and I certainly would never impose mine on anyone. I believe that when someone passes on, we can continue speaking with them and they help us from Above. I have a whole host of loved ones and friends who help me through the day. That’s not to say that I don’t miss having them all here with me terribly. I do!!!! Sometimes I get pretty frustrated but I suppose if I didn’t have my Faith to lean on, I would probably miss them all more and I would feel more helpless.

My Mom is Oma too. My Dad is Opa.

I also plan on buying the Everybody Loves Raymond DVD’s…after I collect the rest of the Little House on the Prairie series. I only own one season so far…8 left to go. I love that show too. Very wholesome and it kind of fits in with the way we run our house. We try not to purchase anything that we can’t make by ourselves. It is fun…time consuming…but fun.

A Good Day To All,
Caroline

[patti]

Hi Caroline,

I like that.. give me a keyboard! I can relate totally to that. Stick me in a room and I’d rather stand in a corner then try to go talk to someone.

My father-in-law passed away a couple of years ago from Alzheimers. Mom and I cared for him the whole time at home. Six days before he died she finally had to put him in an Alzheimers unit because he never slept. I have so much respect for her for taking care of him for so many years. They always promised each other they would never put one another in a “home.” So we just all pitched in to make it work to keep him at home. But wow, that was hard. I didn’t have any kids in school then so that helped a little. I’m a little covetous of my days now because I don’t like missing school. I’m thankful for the flexiblity of homeschooling because we can do it when we want, where we need to. So that really helps. I know some people have to put their kids in school for many many reasons. That will just NEVER be an option for us. We made a commitment to God when we had kids that we would school them until they’re done. And God gives us the grace to do that.

It’s interesting hearing the story of others lives. Donna, you are a strong lady. It helps me have more understanding of my mom. My dad died and she still had 7 kids at home. It’s not easy raising kids alone. Ramble all you like. The stories are kind of neat. When one sees what others have gone through it gives great perspective to what we’re going through in our own homes.

Donna, my MIL is kind of like your mom. She does not do doctors or treatments. Transfusions is all she’ll do. The doctors keep trying to get her to do vidaza but she won’t.

Caroline, when my kids are all grown up and done with school I am hoping to do a home business of my own with making custom wedding dresses. I know what you mean about having a diversion. Sewing is that way for me. Someplace I can go and do something and take my mind away from everything that’s going on.

Have a good day.

patti

p.s. is Oma and Opa eurpoean? I like that so much better then grandma and grandpa. It’s more endearing.

[Caroline]

Patti:

Alzheimer’s is a cruel disease, isn’t it? My husband’s aunt died from it last year. We helped take care of her. Now another one of his uncle’s just got placed in an Alzheimer’s Unit in a nursing home last week because he runs away and his wife isn’t strong enough to chase him anymore.

We always vowed to homeschool when the kids were little too but unfortunately, we never got the support. We both have really small families and not alot of a social life so the kids felt really left out. So we enrolled them in a school up the street and I volunteered there half days until the last one finished grade 8. I also got a part-time paid position as teacher’s aide in the same school. It helped alot having me be there. I was surprised but none of them were ever ashamed. In fact, they used to argue over whose class I got to go into. I quit the job when our youngest moved onto highschool. Still, I wish I had stuck it out and homeschooled until the end.

I agree about others’ stories being inspirational. I find that I gain strength from other peoples’ strength. It also shows me that there are folks out there who are alot worse off than I am and it humbles me and makes me stop feeling sorry for myself.

My parents also don’t like doctors. They go because physically they need to now but by the time they get home, they sometimes change the course of therapy. They are so cute! Now, Dad is being pretty serious though. This is huge for him and he is following instructions to the letter. He got his first Eprex shot thismorning. I am going over tonight to knit with Mom and keep an eye on him. He was told that he may get extremely achy tonight.

I love sewing. My dream has always been to sew my girls’ wedding dresses and bridal party dresses. I still need more practice though. Lately I have been quilting. I can put it down and pick it up later on. I don’t have a sewing room so I have to sew at the kitchen table. That gets to be a hassle when I don’t have alot of time at once to dig into a project. I spend more time setting up and moving things to the side so that we can eat dinner. Hence, I don’t sew as much as I would like to. I also do alot of knitting, crocheting, cross-stitching and spinning both for my family and to sell.

My family is Austrian. We call our grandparents Opa and Oma. My kids have told me that they would like me to be Grandma when they have children because there will only ever be one Oma for them…my Mom. She was pretty honoured by that. I told them that’s fine…I will be Nanoosh and Dad will be Hickpappy. So, that is how we sign their Birthday cards now. It burns them up but Peter and I laugh our heads off. We always try to keep laughing…cuz when you stop laughing…you start crying.

Caroline

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