off topic - another (un) health update

Yesterday I visited with a Neurologist. My back has been bothering me for many months and a couple of months ago I went to my Primary Care Physician who sent me for Physical Therapy. After meeting with the Physical Therapist the first time, she suggested that I make an appointment with the Neurologist. My family history includes my dad, brother, uncle and cousin who are all males having a late onset type of Muscular Dystrophy. Most of them began showing symptoms by their early 40's. I thought that maybe it would bypass me because I am 51 now.

No such luck. I was given the diagnosis yesterday after having a few little tests performed. The Neurologist agreed that it has usually begun earlier than this age with most folks. Her theory was that I have been dealing with so many other health issues that I have been having symptoms for years but wasn't aware of them so much because of me being focused on other things. Yep, she is probably correct.

Anyway, I left her office with a prescription in my hand for ankle/foot orthodics. I am very familiar with them, because all of the afore mentioned use them. They are a very hard plastic material and are shaped so that they fit under a persons foot and up the back of the leg. They fit in to the shoe They are held together with strips of velcro. She said that my cute shoe wearing days are over. She also said that I am going to really appreciate how much they will help with my balance and strength.

I found it very interesting how she explained to me that my body is putting in about ten times the effort just to walk, than the normal person. That may answer my awful fatigue issue. I am a slug after about 2 PM each day. So, even if they are ugly as sin, maybe these braces will be a blessing to me. Sure could use some extra energy in the afternoons.

Thank you all for letting me share this here. I believe that I met some really nice people here a few months ago when I posted about another health crisis.

Will be back later on. Have to go and "fight" with a cell phone provider. See ya.

Ruby

Ruby, I'm so sorry you didn't have better news. But knowing what you have to contend with is the first step to dealing with it. Know that there is so much affection for you here--we all think of you so fondly. Take care of yourself Cooky, and keep us posted. Anne

Wow, do you ever have a lot on your plate to deal with. If there is any way we can help, please let us know. That's a lot to absorb, but with your optimism and strength, I know you'll do ok.

I'm very sorry to hear your news. Hopefully the braces will work and things improve quickly.

Joanne

Oh, Ruby! I'm so sorry. At least you now have an explanation for the fatigue but I think you've had enough to deal with lately without this.

Sending you big, big virtual hugs.

count me in. sorry you got that news, but hopefully in the short term the braces will have you feeling better...........you are much loved in mid atlantic!

Awwwww....you guys are too cool!!! It really feels good to hear words like affection, fondly, hugs and loved. It really feels good. I just spent the morning closing out one cell phone plan and going to another company. That took a couple of hours. I have been unhappy with the plan that I have for my teenager and hopefully have bought one that doesn't have all the hidden costs that kept getting me monthly.

I don't know if I have changed since yesterday or not. I had two men offer to open the doors for me as I entered and left the two different buildings today. In the past, I would have looked at that like, oh how kind, they must think I am cute or something. Today, I feel like a cripple and one that it is very obvious to everyone else. I have been in denial I guess until yesterday. I really am getting around rather poorly.

Yep, the doctor said that I was going to be able to tell the biggest difference with the braces. I hope so. I am taking this harder than I did the threat of cancer and removal of my breast. The doctor who also treats my son for epilepsy and has known me for ten years, even hugged me as I left her office yesterday. Man, oh man. There is a big old knot sitting right there in my throat, and a tear caught in my eye. Along with that I feel like my head wants to burst wide open. I guess that I need to go and sit somewhere quietly and let myself "feel" my sadness. I guess that I can write and have tears flowing at the same time.

Disability and handicaps are nothing new to me. I spent my childhood growing up watching my dad's muscles atrophy and melt away. He spent about the last ten years of his life in a wheelchair. This condition starts in the feet and slowly moves on up the leg. The arms are affected also, but I never really have paid too much attention to how things tend to go there. I do know that even my grandfather had this and it displayed itself much like parkinson's disease, with the severe shaking of the hands.

My brother and cousin are ten years ahead of me in age and disease progression. They are at the point where it is very difficult for them to get spoons and forks to their mouths without dropping everything from shaking so badly. I think that my cousins girlfriend helps him eat in public. I watched my uncle being fed, but daddy usually fed himself and made lots of noise from the utensils hitting against the plates.

Now I have to smile. You heard me discussing my cousin dating someone. Well, he is dating my hair dresser, so she always tells me about his disease progression. She is very much in love with him. She is about 15 years younger than he is and they make a very good looking couple. Now get this. My 59 year old brother who had been single for about 30 years married a 32 year old two years ago. This stuff must not mess with a person's libido. ha-ha

Okay, the knot and tear and headache are gone. There is one more story to tell where in the case of something really sad actually being funny at times. It is all in the attitude, I suppose.

My niece and her family lived in the basement of my parents place back about 15 or so years ago. They always came up stairs for meals though. Tammy had a toddler named Randolph that one day was sitting at the dinner table and was hitting his spoon against his plate making lots of noise. His mom fussed at him and said "stop that Randolph", and he said, "but Paw Paw does it." I find that so hilarious. I would have loved to have seen that. The child just thought that was a regular part of taking a meal and that everyone hit their plates like that. I loved it!!!

Anyway ladies, thank you all so much for the kind words. They touched my heart for sure. It is good to feel supported. I will close with a tribute of sorts to my dad. Now, that is a first for me. My dad and I had a very fragile relationship. Many times I was the most angry at him than I had ever been with anyone else in the world. He also had the ability to hurt me more with his words than anyone else ever did too. Anyway, there were times when we were able to get along fairly well and during one of these times I can remember writing him (my way of communicating with both parents when I became an adult) and telling him that one gift he had given me was that by watching him face the many challenges of an uncooperative body that he faced during my life, that it had given me strength to endure what ever it was that I had to deal with.

Both of my parents are dead now and sometimes I really miss them, even if things were not always hunky-dory between us. They were both able to teach me things by their example that have served me well. Too bad that so many times it takes a death for us to realize how valuable another person is to us.

I hope that you all will have a great rest of the day. I am thinking of taking a nap.

Ruby

big hugs from here too :-)

i came over from the other thread. This sounds like a lot to come to grips with. I hope, as others have said, that the diagnosis will help you get fixed up for now. Prayers and hugs
Dorothy

Thank you both larienda and Dorothy. I will be okay.

I am going to get off of here for a while and maybe take a nap. See you great people later on.

Ruby

rubyw, I too had to come over and look at this post. I am so sorry for the news, but now at least you came put a name to the problem. Sometimes not knowing what is wrong is so frustrating. Just get those orthotics, and know that even if they aren't pretty, they will feel pretty to you. Hugs and prayers for you.

Hi Ruby, Just got back from my treatment today, and had to check the boards. So sorry to hear about your diagnosis. {{{{Hugs}}}} .
I just hate the way I have been feeling also and it is hard to tell if I am still in the after effects of chemo, old age (57) or just being impatient that it is taking so long to get back to normal. I haven't heard anything back on my blood tests and I know they will call if there is anything to be alarmed about.

I sure hope the braces help you feel better, and just go ahead a let the guys open the door for you, at least there are still men out there that know how to do that. It is becoming a lost art and we gals let it happen. (I know I'm one of them).

Chris

Ladies I certainly hope you all feel better and soon - Ruby - I feel so bad for you - you certainly have had more than enough to deal with - all the best, Becky

Ruby, I want to cry for you, I am actually. What difficult news. Yes it is nice to have a name, no it is not good to have that name. Please know that my heart aches for you.

Pauline

Thank you all, lovely ladies. I have almost not come in to check the threads today because I feel like I was throwing a pity party yesterday. I will tell you like I just told someone else though. I have decided to allow myself the same courtesy that I would extend to each of you if you were going through a grief process. I am gonna let myself be sad whenever I need to. No, this is definitely not the end of the world but it isn't the news I was hoping to hear either.

I just found out by reading an article that another Behcets patient sent to me that I am currently taking two of the medications that someone with Charco should avoid. I will call doc tomorrow morning. One is my antidepressant and I am sure that I don't want to be without one. I can imagine that I would be just about a basket case by now if I didn't have that little help. The other I have been taking just to let the doctor think that he was treating my Behcets. It didn't help that I could see and possibly has sped the deterioration. Anyway, at this point, that is spilled milk.

I am off to prepare a london broil (yummy) for dinner. Take care my friends. I will check back in later on. You guys are the very greatest.

Ruby

A pity party it's not! any one of us would do the same, it's hard to come to grips with news like this. I can't imagine what it must be like trying to wrap your mind around it.

You're doing good, though, doing your research. Now you know what you're up against you can at least fight it!

Ruby, there are lots of different kinds of anti-depressants and I'm sure some that won't affect your disorder. Keep in mind, too, the source of the article. Is in internet scuttlebutt or based on real science?

I think your best bet is to talk to your doctor and if you don't trust them, talk to a pharmacist. They often know more about the meds than the doctors.

You go right ahead and have all the pity parties you want. You have a right. Just make sure you don't let it drag your spirits down.

I wanted to tell you one thing I thought of when you wrote about your cousins being 10 years further along. When I was in college, one of my anthropology professors had spent a lot of time in the field in Africa. He had contracted a rare blood parasite. He knew that eventually it would kill him and there was no cure. But he had an unbelievable attitude about it. He said he refused to assume that he would die from this parasite, that within 10 years, researchers stood a good chance of finding a cure or at least a treatment and he was assuming the best, not the worst.

The same could very well be true for you. In 10 years, you could have medical and other treatment advantages that your cousins never had.

Ruby
I am just catching up and wanted you to know that I'm praying for you, and I agree with what hart has said. I believe in miracles ... and I'm praying for one for you.
Hugs&blessings ... elaine

Thank you dmcdevitt, hart and IO1. Yeah, I agree that it is kind of a numbing experience. I had the same sort of feeling when I found out that I had breast cancer. My mind went numb somehow, but I am grateful that it did. I realize that I will have sad times over losing my ability to do things that most any normal/not ill people do without thinking about it. I am still not very bad, though I must look worse to others than I had realized. This stuff seemed to come out of nowhere though. All of a sudden last spring I began stumbling all over my front yard. My hubby was the one who had to take over planning and planting it and I do the back yard and sides of house.

Hart, I hear what you are saying. The professor had a great attitude. When I became ill with another autoimmune system condition, I began worrying about my children getting it. I had to do what the professor did. I had to believe that by the time they would develop it in their late 20's that there would be much better treatment available for them than I had access to. It was the only way that I could cope with the possibility. Now there is also a 50/50% chance that I have something else that they might inherit. I need to believe that more reasearch will have been done by the time my boys reach late middle age and possibly prevent the Charco condition.

Hey there Elaine - I will take all the prayers that anyone wants to say. I don't know if we want to classify it as a miracle, but having that list of medications to avoid, was very lucky yesterday. Oh yeah, I have deleted the website now but it was quoting reputable organizations, so it is probably right on target. I will be discussing it with my doctor though. For now, I am not going to take the colchicine, but will continue on antidepressant of which I take a very large dose. Maybe I will be able to get away with using less of it, but ain't gonna attempt that at the moment.

Thanks again for thinking of me gals. I hope that you will all have a good weekend.

Ruby

Ruby, I just found your thread & am truely Praying for you. I don't want this to get you down...you have withstood so much! and have persevered!
I want to tell you something....My FIL, SIL, & BIL (DH's family) have it. My FIL is 80! and is just now in decline. He has had it his entire adult life. So don't give up! I agree that there will be a cure or at least something to slow the symptoms. My BIL wears the braces All the time. He swears by them. He has had the symptoms since he was a child & is now in his 40's. Too, none of my nephews or my niece have it.
I wish I had words of encouragement for you, because I care. Please keep us posted on your braces & your med situation.
Praying....
Joey

Awwww Joey - Thank you so much for sharing about your inlaws. Yes, I am hearing of more and more people who have it. It is not going to get me down. I have been through much worse. Yes, my dad lived to 82 and was only put in a wheelchair for the last years of his life because he suffered a stroke, not the CMT.

Everyone has told me that the braces are great. Really, if using them will help in the fatigue area of my life, they will be a God Send. I just won't we wearing the short skirts that I bought last fall to wear this spring and summer. ha-ha Oh well.

I do have one concern. My older son is being married next Saturday and without discussing it with me, they have included me in their ceremony. He told me that Nicole's mother and I will be lighting candles. I told him that I was a bit self conscious about the way I walk and he didn't pay much attention. I guess that my greatest fear is that I will get up and fall down or something. I am not going to worry about it though. Just gonna do it.

I will get someone to take a picture of me all dressed up on Saturday. It will almost a once in a life time event to see me doo-ded up. Most of the time I spend in night gown or pajamas.

Your kind words mean a lot to me Joey. Thank you for taking the time to post. Take good care.

Ruby

Ruby, you'll do good on Saturday, I have confidence in you. Are you getting enough sleep?

I had to laugh about the short shirts, I just started getting into wearing tank tops in the summer. Now I'll have to go back to tee shirts and polos. I also have some blazers that I wear to work that the right sleeve are now too tight, I have some swelling in my upper right arm that has not gone away since the surgery.

We will all be thinking about you, and wishing you the best! You are a strong woman and I can hear you roar!

Chris

Chris, I have a lot of problems with jackets fitting because I'm so broad shouldered and chesty. Some brands that I have found cut a little more generously (in various price ranges) are Liz Claiborne, Jones of NY, Blair and Sag Harbor. Blair would be the most generous cuts and by ar the cheapest prices. I've also gotten some excellent fits from jackets from some of the brands on QVC. (QVC is also great because they give you the actual garment measurements instead of just a general size chart.)

I think you might find if they're cut a little bigger across the back and shoulders they won't pull so much on your upper arm. I know if they're too tight in the back on me, the upper arms are going to be very tight.

It won't be as dressy, but you might try switching to nice cardigans instead of jackets until the swelling goes down.

Ruby, we all know you're going to be the belle of the ball Saturday and will do fine lighting the candles. I think it's extremely sweet that your son wants to make sure you're part of the ceremony.

Sag Harbor seems to be a good fit for me too. I get a lot of my work cloths by mail order thru Willow Ridge. I was thinking of cardigans too, the office out front is a bit on the cool side, that is until I get a hot flash. lol

I would think cardigans would be a lot more comfortable. I got some really nice ones for great prices just before Christmas at Kohls. I've forgotten the name but it's the Kohls brand. One is cabled and zips up the front so I can wear it as a cardigan or a pullover. Another similar one with a windowpane pattern. Both were very soft, very nice yarn. Another one is a nice plush yarn. Very warm.

They had some Sag Harbor on sale too.

I'm assuming you have a Kohls nearby. Their online shopping is awful - they're usually out of everything.

BTW, I also got some of their brand cotton with a bit of spandex turtlenecks and long sleeve t-shirts and I think they're the nicest I've ever gotten anywhere. Very soft and keep their shape very well. They had them in prints and solids.

There is a Kohl's near the cancer center where I get treatment, I'll talk my husband into stopping there again sometime when I have a treatment. The one that is 45 minutes away is a traffic nightmear to get to. I really like to keep my life easy right now. So I don't go into the city if I can help it.

I ordered some pants from Willow Ridge they had 26 inch length Buy 2 get the 3rd free. Hard to find pants that are short enough for me.

Do you like corduroy pants? I got some of their brand stretch pinwale corduroy. I like them very much and I know they came in tall, regular and short sizes. I'm sure they have the same pants in other fabrics.

Never mind on the pants. I just found them at kohls online and both the short and petites versions have a 29 inch inseam.

Crofts and Barrow (one brand) and Sonoma are the Kohls brand names I couldn't remember. Crofts and Barrow are more dressy, office wear, Sonoma more casual.

I'm set for pants for awhile. We don't have a dress code at the office, but I alway felt comfortable in a blazer, I also wore skirts before I got sick, then just didn't feel like dealing with dress shoes and hose.

Maybe this spring I'll fell more like shopping.

Hey there - I guess that I need to re-read my posts before sending. I meant to type SKIRTS. Oops. I did say skirts honey. ha-ha I wore one around the house on Christmas Day, so I might just take to wearing them around here and not necessarily outside the home.

I am another person of short stature Chris and need to order petite size slacks and skirts. I don't ordinarily wear cardigan sweaters but ordered two last winter that I have been wearing all the time recently. One is a very bright purple and the other a very bright pink. They hang almost to my knees and I love them.

We had our first snow of the season yesterday. How much did you have hart? We have about 2 or 3 inches I think. I am not sure if I will make it to my first appointment of the week or not. I live on the side of a mountain and am not sure how much sliding I want to do. It is supposed to warm up quite a bit later so everything will melt away. I just don't think that it will be melted by 10 AM.

Everyone have a good week.

Ruby

I love sweaters. I live in either a sweater or a fleece jacket all winter. I was really pleased at the quality of the ones I got at Kohls, especially at the sale price. This was their before Christmas sale and everything was 50% off plus we got another 15% senior citizens discount. I'm sure they're even cheaper now.

Some of the snow melted but I think we got about 4 inches. Our road looks like half of it has been scraped but not the other half and SO called from work to tell me the main road out here is bad but the other roads once you get out of Fort Valley are clear.

The problem with these mountain roads is if they don't get them cleaned and sprinkled with chemicals right away, there are spots that are shaded all day and you can have ice patches that persist for days.

Ruby,
I just saw this thread...I'm so sorry!! Will be continuing to keep you in my prayers!! I still have that brochure for you. Would you dmail me your addy please?

Hi Folks, well the saga continues, need to see the doctor tomarrow, I might be having a reaction to the Herceptcin, itchy, burny, rash and hives. Benadryl has been helping.
The Herceptcin is the IV that I get every 3 weeks, to help prevent the breast cancer from reacurring.

Don't know what we'll do now, I'll keep you posted on what they tell me tomarrow.

Chris

Chris,
Were there any other recent changes to your meds - or have you changed bath or laundry items?

Chris, I have some advice. See a dermatologist. My father had a horrible reaction to the first cancer meds he was taking. The cancer doc would never give him anything for it other than benedryl and it got worse and worse. Eventually he was covered with raw, oozing sores all over his body. He finally got better when he saw a dermatologist.

Thanks guys! Chantell, I went over all my meds nothing has changed. And I have been using the same laundry, fabric softener and bath gels for a long time.

Diane, I'll wait to see what happens tomarrow before I bring another Dr. into the mix. But I'll take
your advise to heart if things don't gets better.

From what I have read all things point to the Herceptcin.

Chris

oh, Chris, doesn't sound like you'll sleep too well tonight. Hoping you get help tomorrow.

Oh gee! So sorry to hear this. All you need, huh? Anyway, thanks for sharing this. There will be some prayers and lots of warm thoughts coming your way. Keep us updated.

Ruby

Chris- So sorry to hear about your health problems. I'll be sending prayers and warm thoughts, too.

Chris,
Any word from your doctor today? Thinking of you.

The Herceptcin is what is causing the rash. Uncomfortable as it is, it is a minor side effect. We will be continuing with the Herceptcin but I may be getting it every week instead of every 3. This will speed up the treatment time so I can stop sooner. We will see next week when I have my next treatment. I'll stay on the benadryl as needed and I was given an RX for some cream.

Rather put up with this rash then another bout of cancer. Don't you think?

And Hart, my doctor did mention a dermatologist if needed later on. But that would only be a biospy to make sure it is the medication I'm on. My oncologist said she has seen this before.

By the way you gals get your mammograms and do your self-exams.

Chris