Aa
Does it even help to have a definitive diagnosis?
I am just wondering, I have been going through so much crap and I am in fear that whatever it is that is wrong with me is going to become fatal sometimes, like I think it has to be cancer or something to hurt this bad. I know a person who had lots of symptoms and for a long time the doctors missed it, she ended up having a brain tumor and the ct scans and everything missed it until it was very large, I am afraid that something like that is happening and one day I will just die or become disabled because no doctors would do the right tests or listen to me. Is this fear even rationale, and does it go away with diagnosis? Has anyone felt a huge relief from being diagnosed as having ms, or is it the same... please share your story with me..... I am having a hard day. Thanks everyone
I know the feeling, Summer. I, too, was almost relieved when neoplasms were ruled out. And I am also relieved to see no active demy was observed. Means the process is at a halt for now.
summerluvr : Yuma is a City in Arizona :) I have heard of Multiple Myelomia, but also live in a major medical city with two major cancer treatment centers. Of course I am in the US (Michigan) and I had a friend who went through Cancer treatments in Canada before immigrating to the US (Michigan) and I know that our medical systems are very different. He did say that it took him a long time to get into a specialist but once he did begin treatment he received very good treatment. I hope that your treatments are going well and I wish you the best.
jenniferk86: I used to sort of worry about the same thing. When the fatigue wouldn't let up and the migraines got worse and worse, I started to worry that maybe I had a brain tumor or something. When my neurological exam went well, I did relax and figured maybe it was my thryroid. So when they called me and told me I needed to come back in because they found something on my MRI, I got scared again and thought that maybe it was an aneurysm or a tumor. I was almost relieved when they said they suspected MS.
I wish you the best and hopefully you get all of the answers that you need soon.
jenniferk86: I used to sort of worry about the same thing. When the fatigue wouldn't let up and the migraines got worse and worse, I started to worry that maybe I had a brain tumor or something. When my neurological exam went well, I did relax and figured maybe it was my thryroid. So when they called me and told me I needed to come back in because they found something on my MRI, I got scared again and thought that maybe it was an aneurysm or a tumor. I was almost relieved when they said they suspected MS.
I wish you the best and hopefully you get all of the answers that you need soon.
Thank you all for the warm welcomes:) I don't think I have multiple myleoma, I just have come accross in my search because i have had some abnormalities with albumin being low and recently a low anion gap, which pointed in that direction, but I did research and the symptoms didnt fit, I just was wondering how your experience was having something rare. I think that I must have something rare if nobody can find it... but then I go back to thinking, I'm just a hypochondriac.. it must be all in my head if everyone else is telling me I am fine.. but then I circle back again to there is no way in hell I would feel like this and want to die if it were all just " in my head"... I am a smart woman, and have been consumed by this stuff for months because I feel like I am not going to survive if I dont figure out whats wrong with me. It is probably nothing rare or life threatening, but the thought is there.... If I knew I had cancer, I think I could cope with it, or a brain tumor or anything but not knowing is killing me.... but I know all of you that have a diagnosis of MS probably went through the same type of missing a diagnosis for quite sometimes as it is a long road for some to finally get a diagnosis. I was wondering then, if you all at least got some releif when you could deal with what you have and move on from the question of what, because right now wanting to know what is wrong with me is consuming me.... but is it really any better when you get a diagnosis, or does something else just consume you then?
crwriter... that is what I think.. but I haven't been diagnosed... so I don't know how I will actually feel...
crwriter... that is what I think.. but I haven't been diagnosed... so I don't know how I will actually feel...
Heya and Hiya. I just found this forum recently and it has helped me tremendously. I am just in a diagnostic process. I beleive it will help me to know for sure. I've had 10 years of test results ignored. Knowing will help you plan. Knowing will help you understand what you need to do to be able to switch gears into a mode that you can best perform in order to best help those kids of yours. You will know what you can and cannot do and put your energies into what you can do and stop fighting to do what you can't. In many ways I have been fortunate. In some ways I have not.
Knowing will allow treatment to best enhance your abilities. Knowing will not give back what you anything you have lost. Knowing is a good thing. I'd rather know.
Knowing will allow treatment to best enhance your abilities. Knowing will not give back what you anything you have lost. Knowing is a good thing. I'd rather know.
Hi there, yes Myeloma is a rare cancer, I'm surprised you have heard of it... I had not, nor had my friends or family. In Canada there are only 2000 cases a year diagnosed. and then with my age it is extremely rare (i'm 33)
the symptoms I had from the cancer that were MS like were from an even rarer (yes my chart has the word rare all over it!) presentation of the cancer causing a blood abnormality called hyperviscocity syndrome. This affects only 5% of MM patients according to my doctor. My symptoms from this were foggy vision, frequent migraines, numb hands and bleeding. (nosebleeds, bowel bleeding). When they diagnosed me I was really anemic, like really anemic almost needing blood transfusions.
I had many other symptoms that were more typical of cancer (i know this now!) including night sweats, weight loss, fevers, frequent infections, and all the anemia symptoms.
If you are really concerned about MM, like I mentioned this is not tricky to diagnose. your doctor order the basic CBC blood tests, and the protein tests. Myeloma causes a spike in a protein in your blood that is pretty indicative.
in my case I was just seeing the wrong doctor who could not look past the specialty.
I see a councilor through my church has helped me alot. I don't talk to people much about "my problems" so having a person I can unload on who wants me to speak about what is really going on has been really helpful for me. I also had to get to the stage of living with a chronic illness, but the key word is Living!
the symptoms I had from the cancer that were MS like were from an even rarer (yes my chart has the word rare all over it!) presentation of the cancer causing a blood abnormality called hyperviscocity syndrome. This affects only 5% of MM patients according to my doctor. My symptoms from this were foggy vision, frequent migraines, numb hands and bleeding. (nosebleeds, bowel bleeding). When they diagnosed me I was really anemic, like really anemic almost needing blood transfusions.
I had many other symptoms that were more typical of cancer (i know this now!) including night sweats, weight loss, fevers, frequent infections, and all the anemia symptoms.
If you are really concerned about MM, like I mentioned this is not tricky to diagnose. your doctor order the basic CBC blood tests, and the protein tests. Myeloma causes a spike in a protein in your blood that is pretty indicative.
in my case I was just seeing the wrong doctor who could not look past the specialty.
I see a councilor through my church has helped me alot. I don't talk to people much about "my problems" so having a person I can unload on who wants me to speak about what is really going on has been really helpful for me. I also had to get to the stage of living with a chronic illness, but the key word is Living!
Hi Jenniferk86,
I don't think we've met before so welcome to the forum. Having an unknown illness and a family to care for is tough. I think most if not all of us are in your situation. Fear is a component to any unknown and having witnessed a scary life-threatening experience with your friend certainly does not help.
I think Shell's response above is an excellent example of how to handle the situation. My personal mantra is one day at a time and sometimes one minute at a time.
Yes, you could have a rare cancer like summerlver but focus on the word rare. We were all relieved that she finally received the proper treatment and is doing okay. Don't focus on the bad , focus on the good things you have in your life. Your family, your friends and make it a point ot enjoy the "good days" and remember those when the "bad days" roll around.
Being in constant pain does skew ones view on their life and can become all consuming. Take Shell's advice and story and remember it as a success even if it takes a while to get your answers.
Seeking help from a professional counselor my help you deal with the fear and give you strategies to combat your dark days and ways to make your family understand your feelings.
Stick with us and know you can vent here.
Hugs,
Ren
I don't think we've met before so welcome to the forum. Having an unknown illness and a family to care for is tough. I think most if not all of us are in your situation. Fear is a component to any unknown and having witnessed a scary life-threatening experience with your friend certainly does not help.
I think Shell's response above is an excellent example of how to handle the situation. My personal mantra is one day at a time and sometimes one minute at a time.
Yes, you could have a rare cancer like summerlver but focus on the word rare. We were all relieved that she finally received the proper treatment and is doing okay. Don't focus on the bad , focus on the good things you have in your life. Your family, your friends and make it a point ot enjoy the "good days" and remember those when the "bad days" roll around.
Being in constant pain does skew ones view on their life and can become all consuming. Take Shell's advice and story and remember it as a success even if it takes a while to get your answers.
Seeking help from a professional counselor my help you deal with the fear and give you strategies to combat your dark days and ways to make your family understand your feelings.
Stick with us and know you can vent here.
Hugs,
Ren
What are your symptoms, I was recently looking at that too.at this point I really just want to know what's going on. when I too have two kids and don't know if I'm going to be able to do what I need to in order to support my children. I feel like my entire outlook would be different if I just knew, or if others didn't think it was all in my head and act like I can still do everything and if I don't its cause I'm lazy. They don't understand my irritability or the fact that I really would rather die sometimes than have to deal with the pain I'm facing.
oh sorry auto spell correct, I have Multiple Myeloma.... not Yuma I think that is a contry.. haha
I can tell you my story. I have cancer, but had many MS symptoms so was seeing MS doctor who would not diagnose me with any thing because the MS tests were "negative". This went on for a year, before him, i saw many other doctors, so for about 2.5 years so doctor after doctor who didn't diagnosed me with anything, even though I felt progressively worse.
Well looking back the tests may have been "negative" for MS but the tests were showing something was up. The doc just wasn't acting on it. Had anemia, and high protein levels. My cancer is a blood cancer called Multiple Yulma, so once you are looking for it there are no fancy tests (the CBC routine blood test picks up). I ended up getting really sick fainting, and went to the ER and from there received good (fast) treatment. I have to say the though that I had a rare cancer didn't cross my mind! I thought I had a thyroid issue, or autoimmune disease.
Having cancer is pretty scary, but you get through the initial shock and try and get on with life!
Hi there,
I don't think we've met. So, hello. I'm sorry the fear has got you. You ask if the fear is rational and does it go away ....well, knowing the cause of issues definitely adds a layer of peace. But, if it's in your nature to worry, it will more than likely be your 1st reaction to most things you can't control or fix. So upon dx you may come back to these fears. If it's MS outlooks definitely vary. For sure it's not a life sentence though like cancer and others can be. You can work on outlook overtime.
As for me, I never worry about myself - it's moreso my kids and hubby. In the end to keep my sanity I have to convince myself that I've done what I can do for now for them. And, if the situation arises to do something different or better I will.
For now - be good to yourself today, Jenniferk86. Look at what you've done so far to address what's ailing you (or anything in your life). For example, if you feel you've not done enough in terms of going to a doctor, streamlining the problems, and/or describing them the best you can, then make it a goal to try again in some manner. And, that's just one example.... pick anything to work on that has the potential give you a sense of accomplishment.
I'm very sorry about your acquaintence's tumor. Surely it fuels fears. All you can do is take one day at a time and feel some gratification for how you made your way through it. I'll share w/you that I was not afraid to die when I wasn't functioning well -but I was fearful I wasn't going to be able to give my family what they were use to - what I wanted to keep doing for them. I learned to get through each minute of the day slowly but surely. Literally, I had no choice. Though it was the hardest 5 months of life w/MS I learned how to pull off my days despite limited functioning. I'd not be able to do what I do now w/out that time. In a weird way - I'm grateful. Coping mechanisms are priceless.
Sending you a huge cyber hug and hope that my story helps you to keep on keeping on the best you can. It's all you can do.
Sorry to be long winded,.
-Shell
I don't think we've met. So, hello. I'm sorry the fear has got you. You ask if the fear is rational and does it go away ....well, knowing the cause of issues definitely adds a layer of peace. But, if it's in your nature to worry, it will more than likely be your 1st reaction to most things you can't control or fix. So upon dx you may come back to these fears. If it's MS outlooks definitely vary. For sure it's not a life sentence though like cancer and others can be. You can work on outlook overtime.
As for me, I never worry about myself - it's moreso my kids and hubby. In the end to keep my sanity I have to convince myself that I've done what I can do for now for them. And, if the situation arises to do something different or better I will.
For now - be good to yourself today, Jenniferk86. Look at what you've done so far to address what's ailing you (or anything in your life). For example, if you feel you've not done enough in terms of going to a doctor, streamlining the problems, and/or describing them the best you can, then make it a goal to try again in some manner. And, that's just one example.... pick anything to work on that has the potential give you a sense of accomplishment.
I'm very sorry about your acquaintence's tumor. Surely it fuels fears. All you can do is take one day at a time and feel some gratification for how you made your way through it. I'll share w/you that I was not afraid to die when I wasn't functioning well -but I was fearful I wasn't going to be able to give my family what they were use to - what I wanted to keep doing for them. I learned to get through each minute of the day slowly but surely. Literally, I had no choice. Though it was the hardest 5 months of life w/MS I learned how to pull off my days despite limited functioning. I'd not be able to do what I do now w/out that time. In a weird way - I'm grateful. Coping mechanisms are priceless.
Sending you a huge cyber hug and hope that my story helps you to keep on keeping on the best you can. It's all you can do.
Sorry to be long winded,.
-Shell
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