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View Full Version : SAD muscle biopsy results - but I am still smiling ....



Linda From Australia
09-16-2011, 03:20 AM
I know many of you are wondering about the results of the muscle biopsies I had done 3 weeks ago. They did find that there are things wrong with my muscles. However, there are still undergoing tests of my muscle samples for another 4 weeks. Hopefully a diagnosis can be made then. Otherwise my doctor said that they will continue to keep a close eye on me to see how bad i get, and do some more tests. My doctor and neurologist suspect that I have early Motor Neuron Disease, and they cannot be sure until I get worse. Other diseases they suspect are Inclusive Body Myositis and Mitochondrial Myopathy. My doctor also said that they might find other things, so these diseases are only speculations, they have to wait until all the testing has been completed.

Apparently there is no treatment or cure, and my prognosis is very poor. I have already got to the point that I have to use crutches all the time, and that is only for a limited amount of distances.

So this is what I am dealing with, whatever I have, it would be nice to know soon so we can make some plans and modifications so I can work out how to do things differently, and also if I am so very unlucky to have a motor neuron disease, I need to work out some fantastic things I can do now before I can't do them anymore.

I know you were all hoping that I had some good news to tell you, but I don't. Bad news is only that, bad news, nothing more. Bad news doesn't dictate how I am to feel about my life. Good news is better to hear. The good news is that I am enjoying my life, love meeting new people at the pool, love relaxing and reading heaps of books. Many people at the pool comment to me frequently how I bring so much joy to their day - because I always have such a fantastic smile, everytime they see me. Whenever someone asks me about what is wrong with me, they are so surprised about how happy I am. The only thing I feel sad about is that I cannot do what I am so passionate about - teach. But I will get back to teaching again, possibly next year. At the moment, it is time to have fun and enjoy life as much as I can.

rob
09-16-2011, 04:16 AM
Hi Linda,

I was hoping beyond hope that the muscle biopsy results would come back showing nothing wrong. I see they didn't. I am very sorry to hear this news.

You're right though, bad news is just what it is, and nothing more. However, there are far worse pastimes than hanging out by the pool, and reading book after book though!

You hold on to that passion, and you will teach again. If anybody has the will to make that happen, it's you.

I have to leave for an appointment right now, but I'll PM you later, let you know about my rather quiet summer.

Rob

Bonita
09-16-2011, 06:04 AM
i had muscle bisopies done for myositis which came back negative but my pet scan showed differently and that was the confirmation. I wish you had better news. Bonita

Manderson
09-16-2011, 06:46 AM
I too wish it was better news Linda. But you have a good attitude (better than what I would have). My best to you, Linda.

tgal
09-16-2011, 06:58 AM
I have been sitting here trying to find the words and wondering how I have tears over someone I have never met. I say all the time that we are a family and I mean that. Never meeting means nothing because I have spent more time with you in chat then I have spent with my family over the last couple of years. I never thought I would say this but I hoping it was "just lupus".

Your attitude doesn't surprise me though. You have such an amazing sense of humor and your joy is infectious. I want to say something profound but I have nothing. All I have is to tell you how much I love and care about you. You have changed my life and it would not have been as well without you in it. I will not accept that they won't be able to fix/halt this in some way. I choose not to. I wish I was there during pool time.. ok, no I don't. This steroid body says NOOOOO WAYYY. LOL

Keep us posted. You know that we all care about you

tgal
09-16-2011, 07:02 AM
i had muscle bisopies done for myositis which came back negative but my pet scan showed differently and that was the confirmation. I wish you had better news. Bonita

Oh Bonita I am so sorry! I will say the same thing as I said to Linda. I will believe that things will turn around for you. You too have enhanced my life.I am better for having known you

debbie-b
09-16-2011, 01:12 PM
Hi Linda,

I am sorry, you had to get this kind of news.
I envy your attitute though, you are looking at this the right way.
My thoughts and prayers are with you.

Debbie

Nonna
09-16-2011, 05:27 PM
Linda, my friend. You are amazing; bad news is just facts. Facts we have to learn to live with. Your attitude, your smiling face has helped me so much. As I notice myself deteriorating slowly but surely; I think of you. I've let the PD and Lupus get the better of me this year. But I'm fighting back now thanks to you and everyone here.

Thank you and hugs- you are the best. As for teaching, tutoring isn't the classroom. But think of the struggling students you could help. It's not as strenuous and it is rewarding to see someone go from failing to best in class.
Hugs and Good thoughts.

Hey I think I actually got through this post with no gobbelty gook

BonusMom
09-17-2011, 08:25 AM
I'm so sad to read this, Linda. I was so hoping (as I know you were, too) that this would not be that the result. Now that you and your doctors have more information, hopefully they can suggest some treatment/lifestyle modifications to make you more comfortable.

This sucks (a direct quote from my Bonus Daughter).

red246
09-17-2011, 02:04 PM
Linda,

As I said in chat, you are amazing! Your outlook inspires me to work on my own. And as Mari said, you have influenced us and changed our lives for the better. I think of all the times that the 3 of us were chatting in the middle of my night when I felt like crap and you always made me laugh - painfully - but you still made me laugh and forget about how crappy I felt! I wish you had gotten better news. As I said before, I wish I could twitch my nose and make us all better - wouldn't that be nice! Sending lots of prayers & ((((HUGS))))!

magistramarla
09-17-2011, 08:57 PM
Linda,
Hang in there, girl and keep up that great attitude of yours.
I've been needing to use my wheelchair more often lately. You should get one - a light racing type - and teach from it!
Keep us informed of what those docs figure out.
Gentle Hugs,
Marla

kim,l
09-18-2011, 05:11 AM
dear linda i am so sorry the news has been bad you are an amazing women and you inspire all of us with your strength and your sense of humour i think myself lucky to know you even though we have not personally maybe you could try walking frame with seat first they are a lot stabler than crutches and help you get around take care my friend i am here anytime you need to talk just pm when ever you need to many hugs

steve.b
09-18-2011, 05:50 AM
i have had the pleasure of meeting you.
and i love your attitude.

you are challenged...... not defeated.
you will find a new you.

please phone or pm me whan you need an ear.

ps. i love the big brother title.

giggle
09-18-2011, 05:25 PM
Hey Linda!!

I can see you looking at this as a start on a new life... that is so beautiful.

It is impossible to feel sorry for you... you are such a positive influence on peoples lives and attitudes and you know you are. I cant help but feel a bit of a heavy heart though... I was certainly hoping for good news.

Linda... you are still teaching!! You are teaching us all how to live life with what we have and enjoy what we can.

Linda From Australia
09-19-2011, 05:22 AM
Thank you everyone for your kind words, they mean so much to me. I wish you were all here in Perth so I can give you all a thankful hug.

I know you keep sayng that I am a positve person, and have the right attitude. But at the moment, I am struggling. Probably because I allow myself time to be upset, so I can get on with other more important things I need to do, like living and having fun. My struggling will pass in time, I know that for sure!

Spending nearly 3 weeks in hospital was tough, especially the way the medical staff were treating me. I felt as though they had a secret that they were keeping from me. Like when the occupational therapist came into my room the day after I was admitted and asked me what support I needed. When I asked what he meant, he said about going to my house to see what adjustments need to be made. Then when the speach therapist came in and asked me to eat and drink in front of her, and said she had to make sure that I was safe. She measured the volume of my voice and said it got quieter and hoarser the more I spoke. Then the physiotherapist gave me crutches and told me to use them all the time that I was out of my room. Then another doctor came in and told me he didn't want me to walk anywhere without a family member with me. Then the dietitian told me I can eat whatever I want, high calorie foods, and to make sure that I eat fats. This was after a year of only eating very healthy foods. Then to top it off whenever my specialist saw me he kept telling me that there wasn't any cure, or treament, and the only thing that can be done was support. And not to mention all the nurses fussing over me, and especially some of the night nurses.

So when I did finally got to go home, I starting thinking about the little secrets they were all keeping from me. So I asked my specialist what he and the neurologist thought I had, and he said Motor Neuron Disease. Ok I said. Then I started to do some research, and OH MY GOSH .... 2, or 5 or if I was lucky, 10 years. No wonder I was treated that way. I am coming to terms with what my future may hold, but there are also some other diseases that I may have. Unfortunately, they are all progressive diseases, and again, there is no cure or treatment, just support. Another month of testing my muscles, then they should be able to give me a diagnosis. I am hoping one with a treatment to make me better ..... Yes that is what I hoping for!

I started going to the pool to do some limited physio last week, and for the rest of the day I really can't do very much. It is hard, as I can see how much I have deteriated in a couple of months, I am hoping the physiotherapist will tell me that it is just because I am still recovering from having my arm and leg cut open. But I know that is wishful thinking. He told me 2 weeks ago that I cannot build up my muscles because I have tried for the past 6 months witout success. So I dread what he is going to tell me tomorrow. He did reassure me at my last visit that he will support me as much as he can during this stage. I was hoping he would tell me to use the crutches until my leg heals, but all he said to me was to keep using the crutches, and to make sure my legs don't get fatigued.

I think about my friends on WHL often, but cannot post as much as I used to because I get tired so easy, especially since I have started doing physio in the morings. The rest of the day is spent trying to recover. And when I have an appointment later on in the day, exhaustion is a under statement. Thanks again for all your kind words, I do hope you all have a good week.

tgal
09-19-2011, 08:47 AM
Thank you everyone for your kind words, they mean so much to me. I wish you were all here in Perth so I can give you all a thankful hug.

I know you keep sayng that I am a positve person, and have the right attitude. But at the moment, I am struggling. Probably because I allow myself time to be upset, so I can get on with other more important things I need to do, like living and having fun. My struggling will pass in time, I know that for sure!

Spending nearly 3 weeks in hospital was tough, especially the way the medical staff were treating me. I felt as though they had a secret that they were keeping from me. Like when the occupational therapist came into my room the day after I was admitted and asked me what support I needed. When I asked what he meant, he said about going to my house to see what adjustments need to be made. Then when the speach therapist came in and asked me to eat and drink in front of her, and said she had to make sure that I was safe. She measured the volume of my voice and said it got quieter and hoarser the more I spoke. Then the physiotherapist gave me crutches and told me to use them all the time that I was out of my room. Then another doctor came in and told me he didn't want me to walk anywhere without a family member with me. Then the dietitian told me I can eat whatever I want, high calorie foods, and to make sure that I eat fats. This was after a year of only eating very healthy foods. Then to top it off whenever my specialist saw me he kept telling me that there wasn't any cure, or treament, and the only thing that can be done was support. And not to mention all the nurses fussing over me, and especially some of the night nurses.

So when I did finally got to go home, I starting thinking about the little secrets they were all keeping from me. So I asked my specialist what he and the neurologist thought I had, and he said Motor Neuron Disease. Ok I said. Then I started to do some research, and OH MY GOSH .... 2, or 5 or if I was lucky, 10 years. No wonder I was treated that way. I am coming to terms with what my future may hold, but there are also some other diseases that I may have. Unfortunately, they are all progressive diseases, and again, there is no cure or treatment, just support. Another month of testing my muscles, then they should be able to give me a diagnosis. I am hoping one with a treatment to make me better ..... Yes that is what I hoping for!

I started going to the pool to do some limited physio last week, and for the rest of the day I really can't do very much. It is hard, as I can see how much I have deteriated in a couple of months, I am hoping the physiotherapist will tell me that it is just because I am still recovering from having my arm and leg cut open. But I know that is wishful thinking. He told me 2 weeks ago that I cannot build up my muscles because I have tried for the past 6 months witout success. So I dread what he is going to tell me tomorrow. He did reassure me at my last visit that he will support me as much as he can during this stage. I was hoping he would tell me to use the crutches until my leg heals, but all he said to me was to keep using the crutches, and to make sure my legs don't get fatigued.

I think about my friends on WHL often, but cannot post as much as I used to because I get tired so easy, especially since I have started doing physio in the morings. The rest of the day is spent trying to recover. And when I have an appointment later on in the day, exhaustion is a under statement. Thanks again for all your kind words, I do hope you all have a good week.

I want to be like you when I grow up. Your inner strength is amazing. I too wish I was close to you so we could have tea and I could hug you close. I understand that you get very tired but thank you for stopping in from time to time and letting us know how how things are going. Miss you tons

Gizmo
09-19-2011, 03:00 PM
Linda, I don't have words to express how sad I am that you got this bad news. Your bright outlook will help you through whatever is to come, and I hope you'll let us continue to be part of your lives.

Saysusie
09-19-2011, 03:27 PM
Linda;
I am so sorry that your news was not the good news that you were hoping for and that you must now deal with having this new disorder that has no cure, only support. We are here to give you as much of that support as you need.
You are such a brave, loving, strong-willed, and amazing woman. I truly admire you and beautiful spirit. We could all take a page from your book and use it as a guideline on how to live our lives with all that we are dealing with. I am sending you gentle hugs of understanding and please know that we are always here for you.

Peace and Blessings
Namaste
Saysusie

serand4
09-19-2011, 03:28 PM
First, I am sorry to hear about your diagnosis. But you'll keep walking forward, that's your beautful nature! I have two of my doctors suggesting a biopsy on my legs. Can you please direct me to information on this? I swear, a doctor won't answer simple questions, even if he's the one suggesting it! My pain doctor is sure I have some type of neuropothy. I guess I'll look it up but any info you can offer would be dearly appreciated!

Just keep putting one foot in front of another (when you can!) and remember to breathe! You're in my heart and prayers.

Nonna
09-19-2011, 05:53 PM
Tgal,
I just checked and it would cost us $4,000 to fly Linda and her husband here to Houston.

anyone want to chip in..........

Is there a Make A Wish Foundation for adults with our problems???????
I wish...........

steve.b
09-19-2011, 08:07 PM
Tgal,
I just checked and it would cost us $4,000 to fly Linda and her husband here to Houston.

anyone want to chip in..........

Is there a Make A Wish Foundation for adults with our problems???????
I wish...........


i love the friendship this cyber family has for each other.

count me in on a donation to the fly linda fund.

magistramarla
09-19-2011, 08:21 PM
Linda,
I'm so glad that you have good docs who are trying hard to figure all of this out.
I would also contribute if we could fly you to the States. That would be the time for all of us to make a serious effort at having a WHL get-together.
For everyone in the US, Southwest has some great e-mail only deals (and they are wonderful to the disabled). I would happily fly to Houston or wherever we planned the get-together.
Gentle Hugs,
Marla

tgal
09-19-2011, 08:23 PM
Tgal,
I just checked and it would cost us $4,000 to fly Linda and her husband here to Houston.

anyone want to chip in..........

Is there a Make A Wish Foundation for adults with our problems???????
I wish...........

I LOVE it! Butttt... do we have to pay for them to go back home? I think she needs to stay here with us!

tgal
09-19-2011, 08:26 PM
Tgal,
I just checked and it would cost us $4,000 to fly Linda and her husband here to Houston.

anyone want to chip in..........

Is there a Make A Wish Foundation for adults with our problems???????
I wish...........

Hey wait...how awesome are you Nonna! You don't even live in Houston and you are going to get her here! It is a kind of "meet in the middle of the coasts". I like !! I like it!

giggle
09-19-2011, 08:52 PM
if its after I move I would be happy to donate a little to the get Linda+hubby to the US fund : )

Linda From Australia
09-20-2011, 03:18 AM
ha ha ha, you people are so nice - and funny ... fly me to the USA fund. Wouldn't that be nice. The problem will be how am I going to cope with the long flight, and I would want to take my whole family with me. Thanks anyway for your kindness.

We were planning on going on a cruise around New Zealand in about 2 or 3 years time. But as soon as we find out, (oh gee, this is going to sound horrible) what my prognosis is, we may have to make plans for the trip sooner before I get too bad to travel. We just have to sell one of our cars and that should finance the trip. Perhaps we could meet up with some people in Sydney as we will be there for a couple of hours before we board the ship.

I went to the physio today and he said, (among more aches and pains, along with more muscle weakness) that I have shin splints. Usually athletes have this pain behind the shin bone because of over training. Apparently I have been on my feet too much. Apparently walking to the bathroom or to the kitchen, and the small amount of exercise I do at the pool it too much. My exercises consists of gentle stretching to keep my ROM (range of movement). And I was told to STOP swimming (all of the very, very, very slow 4 laps), and to only exercise for 2 days then have a day off - all activities. There is a fine line between trying to keep moving to try and stop my muscles from wasting away, and doing too much that I cause fatigue and damage to my muscles. Somehow I have to find that magic point of not doing enough and doing too much. Every week I have been told to do less and less. Soon I will not be allowed to walk at all. I was able to walk around the inside of my house, only using the crutches when I was in too much pain. Now I am not allowed to walk around the house without my crutches. Sad as it is - I am happy because at the moment at least I can still walk. This is just a stage I will have to go through, when this passes, I will adjust - AGAIN.

kim,l
09-20-2011, 05:01 PM
dear linda if it is impossible for you to get to sydney i will try my utmost to get to perth next year to visit you my friend many hugs

Saysusie
09-20-2011, 08:25 PM
Linda; I do hope you are able to take your cruise and that you enjoy every second of it. I am sorry to hear about your shin splints and the fact that you cannot swim as much as you like. I know that it must be difficult to find a compromise between exercise to keep your R.O.M. and exercise that causes problems.
You have such a wonderful attitude and, as you can see, you are very much loved here. I am keeping you in my thoughts and prayers.

Peace and Blessings
Namaste
Saysusie

BonusMom
09-21-2011, 04:00 PM
Linda,
Hang in there, girl and keep up that great attitude of yours.
I've been needing to use my wheelchair more often lately. You should get one - a light racing type - and teach from it!
Keep us informed of what those docs figure out.
Gentle Hugs,
Marla

I love the idea of you using the lightweight racing wheelchair to get around--saving your energy for that instead of the crutches.....would that be more comfortable? Would your arms support your using the wheelchair or do they get too tired as well?

I wish there was something I could do for you. Do you have the Muscular Dystophy Association in Australia?