I was at the internal medicine clinic on thurs and they took a history and did an exam then went over blood work.they told me I have multiple myeloma
A rare blood cancer that normally older people get. They did bone marrow biopsie today and a ctscan to check for a blood clot in my heart.
I am typing this from my smartphone hooked up to heavy steroids. There is no cure and I would be lucky to make years. Please pray for me
My first symptoms were blurry eyes doctor today says I have swollen disks. This is a big shock to myself and family. Over two years I probably went to
20 doctors what finally let to the diagnose
Was the elevated proteins in blood they found in ER
I know you are devastated. I would be. I would want to scream, cry, curse at top of my voice because I would feel so helpless, so it is alright if you do those things. It is only a normal part of the acceptance.
I have to tell you it is late here and I am not functioning at my peak but I could not go to bed without talking with you, so forgive any mistakes or ramblings I post.
I would recommend that you get you and your family into counseling. You and they are going to need a safe place to say anything and everything you feel without worrying about hurting, scaring or upsetting another member of the family or a friend. I know this from experience. I would not trade my counselor.
i will be praying for you. I am not familiar with your dx but I will google it tomorrow and read up on it.
Please stay with the forum as you go forward. You can find so much support here. Although it says MS forum at the top it truly is a family of ppl who care not what the dx is only that you and your spirit and body need support. Support is not quite the right word but you know what I mean.
Hold onto those who love you, grieve when you need to but don't forget to enjoy your life. Not one among us is guaranteed a tomorrow. We should all live for today with the knowledge life is precious.
You are going to feel a multitude of emotions. Recognize each one and honor what you feel. Emotions serve a purpose and if we do not look at them, if we ignore them our body, our spirit and our mind cannot heal.
I have rambled and I apologize. I will pray for you and your loved ones.
I am so sorry to hear your news. Terry's advice is very wise and I hope you will consider it. It is very unfair for a person your age to get a diagnosis like this, and I am sure you are stunned. I really can't imagine how you must be feeling right now, but know there are people who care, and you need and deserve support at this time. I'll keep you in my prayers. Be strong.
I am so sorry for your dx. You will be in my prayers often. I hope you have family & friends near by, their support will be invaluable. I hope there are some treatments that can help slow down what is happening in your body.
I am so sorry that you are going through such a frightening and sad situation....
Eventhough it may not be the type of prayer you are use to the meaning behind it is the same.....Here is my prayer offering for you...
May all beings everywhere plagued
with sufferings of body and mind
quickly be freed from their illnesses.
May those frightened cease to be afraid,
and may those bound be free.
May the powerless find power,
and may people think of befriending
May those who find themselves in trackless,
the children, the age, the unprotected--
be guarded by beneficial celestials,
and may they swiftly attain Buddhahood
This is such sad news. It puts all our small inconveniences of disease in perspective. I will hope that these are the doctors that are wrong - a diagnosis like this should have been obvious to someone over the years of testing you have endured. So many have seen your records surely they can't all have overlooked this cancer.
We do have another member here who spent three months over the holidays thinking she was dying of cancer before a wise doctor put the record straight. And of course we have MaryKay who beat her cancer and is home, back to work and enjoying life.
I am all too familiar with this cancer, because I had a brother-in-law live with it for 6 years. Yes, it is possible to beat the prognossis with agressive treatment.
Please do not give up - you have a lot of unfullfilled dreams waiting for you. And a lot of summers ahead waiting to be enjoyed.
Lots of love and gentle healing hugs sent to you today,
Laura/ aka Lulu
Oh my gosh, precious one. I cannot even imagine what you are feeling right now...could 'desperation' be one thing that crosses my mind?
The best advice I can give you, is to take some time to get your mind wrapped around what you have just found out. Give yourself time to breathe, then you and your doctor's can plan a course of action.
I hope that you don't leave this Forum, because we want to be here to support you. This Forum is full of hugs, love, prayers and compassion. Please let us help you through all of this. We are all hoping that you respond to the treatment and get into remission as soon as possible.
We love you Summer, please remember that and hold it next to your heart.
I'm one who would urge you not to accept this until every T is crossed and every I is dotted. Please do seek to have this diagnosis either confirmed or set aside. Get several more opinions, if necessary.
If this turns out to be cancer, find out all you can about treatment options. We'll help you through all of it. You do have friends here and we won't let you down.
I am very sorry to hear about this. You really really do need to pursue a second opinion, given the seriousness of this dx and the number of doctors you've seen over the years who didn't see it. Please stay in touch and know that if it is cancer, you can fight it, and know that you have a support system that is here for you and rooting for you.
i send my prayers and ask for God's blessings for you as you embark on this difficult journey.
for what it's worth, i have known two women who have fought multiple myeloma for over 7 years who were at least 30 years older than you are when they were diagnosed. with youth on your side, i pray you will have an even better chance of getting on the other side of this disease.
Summer, I'm sorry, so sorry to hear you got this Dx.. my prayers are sent to you and your family. Let us know what/how things are going. I know that alot of symptoms can show up as a Neuro thing and then they find out more info.
i am so sorry for what you have to go through right now and sending you lots of strength- and hope. i've just made a little search and after 5 min came up with a profile of a woman who was diagnosed with this illness in 1996 at age 31 and had done really well -and still does after 11 years with the illness and it didn't sound as if there were any changes. i've seen how all the info pages say the most terrible things about prognosis, but it looks like it definitely doesn't have to be this way. i agree with everyone who said to definitely also get a second opinion. you are in my prayers, too, take care. friederike
I am soooooooooo, sorry to hear about your dx. We are all here for you, we hope you know that. We couldn't possibly know what you are going through right now, or your family, unless we've gone through it. It sounds to me, that you are a fighter. If you weren't, you would have given up looking for a dx, through all those stupid Dr's. Don't give up, build up your immune system, let your friends and family, and this family support you. Vent when you need to, and keep fighting, let your body know your gonna keep fighting, cause as rothexi said, it can be beat. I know there are powerful foods out there that can help. I have a couple of friends that beat 4th stage cancer, with the help of meds and all diet and herbs. I think they saw a natual nutritionist who gave them some kind of chinese herbs. The one friend beat 4th stage breast cancer this way, along with her Drs meds. So, please, don't give up try to fight this.
I just don't even know what to say to you, except that I am so very sorry that your diagnosis took so long, and that it turned out this way. Please know that you have friends here, and we will all be praying for you. Be strong, you can fight this.... don't be to proud to ask for help, of any kind, as that will make you feel better.
There are good drugs out there, and I will pray that they find the right one for you.
my prayers and with you and your family,
Such a shock to read this today, SummerL. You can count on my prayers and I will include that you WILL beat all odds written, that you will have those children and that you get the best of Drs and care you need.
thank you very much everyone. My family is around me and my partner has spent the last three days sleeping over at the hosptial with me. My hemotolgist started aggressive treatment right away (high does steroids) and my counts are already down. She is consulting colleagues at Princess Margaret Hopsptial in Toronto (where I live) who may take over my care, but the treatment likely the same. I start chemo next week but i is a very different targetted chemo for the myeloma cells in the bones, not a blanket chemo. I won't loose my hair. Their goal is to treat me agreessively until I can have a bone marrow (stem cell) transplant with my own stem cells in a few months. We are getting past the shocked phase here
just trying to get agressive in teating it. The first signs were the blurry vision. I now have inflamed diskin my right eye, papilldemia, I wander why no one said anything to the 4 opthalmologist i went to? It's visibile to the internal medicien team. I credit their quick willigniss to diagnose and get all the right people to look at my labs. they were able to diagnose me quick and transfer my care.
I just want to say to all those people who know something is wrong listen too you body. I was told by so many speicialists there was nothing wrong with me, but thank goodness my family doctor kept sending me to specialists.
Myeloma is a rare diagnosis. And often presents these insidious systemic systems, which for me were nerve related. Mostly vision, right side weakness, hyper reflex, trigemnal neuralgia, bladder ... you get the idea. Internal medicne was finally not just looking at me saying well you dont have MS so it's not there problem. Internal medicine said something is definately wrong and we are going to fine out what.
I'm trying to stay positive. I have a lot to do still. I am seeing a fertility specialist on Monday to preserve my fertilitiy after chemo, and a bone density test, and a meeting with the team from princess margarat. Plust the biopsie results should be in.
Thanks for taking the time to give us an update in the midst of all that is going on. It sounds like you did in fact get a second, third and maybe more, opinion with a whole team involved at the hospital. It is reassuring that quick action has been taken and your treatment started promptly. With your desire to have children it is smart of you to be seeing a fertility specialist, and it is good that they can see you so soon. I'm glad that your partner and family are with you, it sounds like you have a wonderful support system, and that can make all the different during a health crisis like this. Of course I'm hoping for the best possible outcome for you. This is scary, but you seem like a very strong person and that too will make all the difference as you face this disease down.
yes, thank you for the update. i'm so glad you've found such a good team of doctors who are starting you on the best possible treatment right away. and of course that you have such a loving husband and family. really good how you approach this, don't think anyone could do this better and this is definitely the right way! i'm sending you lots and lots of strength and you will definitely keep your place in my prayers,
take care and keep us updated if you've got the chance!!!
Oh, my, dear! I was off the forum for a couple days and come back to this! I am so sorry this is happening to you. What a horrible shock to you and your family. I cried as I read your note and the outpouring of support and love from you friends here. And then, I felt your strength as I read your encouraging update. You seem to have the best of the best working as hard and as fast as they can for you. I am encouraged that they have targeted therapy directed at the plasma cells that are out of control. It is encouraging that they can do a bone marrow transplant. My fingers, toes and eyes will be crossed for you. I send a special "Thank you" skyward for the diligence of your Internal Medicine Team.
You must stay with us through this. (Besides, the Mob Family Rules state that you can't leave). We've already bonded to you and we are here for the long-haul forward as you fight your own monster. And you will continue to encourage others to never stop looking for the answers. Everyone needs to know that we all need doctors who will believe us and fight for us.
Cancer sometimes will mimic MS as part of a problem of misguided antibodies called the Paraneoplastic Syndrome. Multiple Myeloma is one of those cancers that can produce this syndrome of neurologic symptoms. Mary Kay was another of us that had what looked like MS, but was really the paraneoplastic syndrome of her lung cancer. It's a mimic that we shouldn't forget.
Summer, you have always put out good ripples in the little pond we all stay afloat in, supporting each of us. I am sending a non-ending series of good ripples to rock you gently and support you from below. Stay strong and true to yourself. People do beat this, and you will be one that does!
I'm so very happy that they are acting so efficiently on your case. That is the best news to hear. Alot of us, and I'm sure you included have seen multiple Dr's with no success. I'm so glad that they worked fast, and are jumping on this.
Keep up the positive attitude, and remember to reach for those who love you when things get you down. They say that God does not give us more that we can handle.... well, I hope that for you.
Keep strong, and remember you always have a home here.
I got out of the hospital yesteraday. I feel quite wiped out as I am on pulsed steroids and yesterday was my first "off" day. I started chemo today as an out patient. It is a very targeted chemo to the myeloma and only takes 10 mins to infuse, and doesn't have the typical side effects. The side effects are numbness tingling, and leg spasms, sounds familiar!. I meet with the top myeloma specialist in two weeks at Princess Margaret Hospital in Toronto. Cancer care Ontario would not pay for the chemo drugs (very new treatment) but St. Michaels hospital is supplying them on a compasionate basis (they are very expensive!) I feel blessed to live in Toronto with care avaialable to me. The goal is to put me in remision with a stem cell transplant asap!
THe MS dr who kept telling me I was healthy came to my room the day before I got out and said well, at least you know now why you felt so bad and can start treatment. It was a bit wierd. He kept telling me I was well, I kept saying I felt like s*** now I gues he finally agreed.
Thanks so much for the update! There are a lot of people in here concerned and hoping for the best for you.
It's wonderful that St Michaels is supplying the expensive chemo drugs. I know you and your family have enough on your minds without adding major financial burdens to the mix. I'm also pleased to hear the potential side effects might not be as severe as with other chemo treatments (or did I read between the lines?).
I sure hope the stem cell transplant comes through for you quickly!
Maybe your MS dr was trying to say sorry when he stopped by your room. I hope he/she learned something from not being able to help you.
You are so much a better person than I am - if faced with this neuro trying to calm his own guilt by seeing you in the hospital, I know I would have had plenty to say. He shouldn't get a free pass or absolution for not doing a complete patient workup.
When my neuro was working through the dx, one of the essential things he did was a thorough cancer screen, including CT scans. He sent me out, saying "Don't go thinking you have cancer, because I don't think that. But I have to be sure that we have not overlooked something."
Your experience again reminds us to stay open to other possibilities.
I hope your treatment continues without side effects . Its good to hear that you are getting agressive care without having to worry about the costs.
Please stay in touch - you have a lot of people here caring about you.
You appear to have a good team of Dr's on your side, and a good family support network. Good forward thinking about the fertility.
Thank you for keeping us updated, and as Q pointed out, 'Mob Rules'
I know that all of us are shocked and upset about your dx. This is, as Terry pointed out an MS Forum, but we are all friends here no matter what the outcome - and we will be with you every step of the way. What are friends for, we are all here for you whenever you need us.
hey sorry to hear about your dx and have some experience of this as both my Mother and Aunt had this.
It was one of my first thoughts I had when first started having sytoms and did mention to the neuro.
As both my aunt and mother were in later yrs of life when dx with this the out come wasnt great , but they were told that the younger u are the better chances you have of surviving for yrs so hope that is the case for you.
Also MM is very hard do dx we were told, so maybe thats why took so long for you. My mother was in her 70s when dx but got it early as she just knew she had it after my aunt and we made them test her for it just to put her mind at rest, never for one min thinking she did have it.
Even at her age she lived for another 2yrs and so dont give up , your young and im sure alot that can be done for you.
Will keep you in my prayers and my thoughts go out to you
My heart is with you. In all the years I worked as a Hospice volunteer I never found one doc that accurately could diagnose a person's life span. I saw dozens of people live for years after they had been diagnosed with only months or years to live. One young man that eventually became a good friend, was told to go home and put his life in order. That was 15 years ago. I could tell you tons of stories like this.
I pray that you remain strong through this and that know that you have endless loving support from everyone here. So many hugs to you, Charley.
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