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P
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| Joined: | Tue Oct 13th, 2009 |
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Posted: Tue Oct 13th, 2009 05:12 pm |
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I have given up on getting a diagnose. The only Dr. who has said anything was the E.R. Dr. I saw two weekends ago. He said that my symptoms and elevated blood proteins pointed to M.M. First time I had heard the term. I have some weird symptoms. Dry eyes, dry bottom inside of lip, burning ribcage. This has been a constant since Feb. I am on Saligen for the mouth, Restasis for the eyes along with special night goggles. Rheumy has put me on a gajillion meds for arthritis for my ribs to absolutely no avail.
Now I have headaches, hip and knee pain, top of hand hurts and top part of spine and a couple of bloody noses. I have been on two courses of prednisone and it seems like the only thing that is holding me together. I have been to five Dr.s now. I finally got a Dr. to do a blood serum electropherisis and it came back alot lower then when I was at the E.R. No idea what that means. Was that because of the recent course of Prednisone? I am terrified that when this course of Prenisone wears off all of my symptoms will be flaming again and I will end up back in the E.R. I am also tired all of the time but my blood tests show that I am not anemic. I have lost 35 lbs. in four months time. Can't get dehydrated and run to the bathroom all the time. I can't keep an ounce of water in me and now drink Gatorade.
Can somebody help me? It is too much for me to handle anymore. P
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denesepete
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| Joined: | Wed Jun 17th, 2009 |
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Posted: Wed Oct 14th, 2009 12:42 am |
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Dear P
My husband had been seeing a 'spine doctor" for over 9 months before a tumor on his spine caused massive pain (a 9 or 10 on a scale of 1 to 10). They finally did a CT scan and found the MM. He had pain in his back and lack of energy and of course looking back now, other bone pain, we attributed to aging (he just turned 62) but not the other symptoms you reported, so WHO KNOWS what your real diagnosis may be. Myelloma seems to hit different people in different ways from what we've seen this past year. Best advice i can give, is if a doctor pointed to MM, then find an MM specialist, not just an oncologist to either rule MM out or in.
Keep going to doctors untill they find what you have and treat it. If they do end up finding MM, Huntsman is absolutely the best in our opinion. My husband was diagnosed one year ago this month, he had 2 stem cell transplants and is now on maintenance chemo for at least one year. We are starting to travel and plan a future again. LIFE is GOOD at our house again. Fight for yourself and don't take NO or I don't know for an answer--you deserve an answer and, hopefully resolution. Good luck to you, keep us posted.
denesepete (caregiver)
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DougC
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| Joined: | Wed Dec 26th, 2007 |
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Posted: Wed Oct 14th, 2009 04:40 pm |
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I had massive burning in my ribs due to nerve damage caused by a tumor in the T-1/2 area. For months I wrote off the pain as being fitness related. I even spent months going to physical therapy. As for the eyes, I seem to remember a message thread here where it was said small crystals can be flowing through the tear ducts and cause dryness. I think it's related to amyloidosis....not certain though. I also know myeloma often causes tumors in the sinus. If you're not seeing a myeloma specialist, you're fighting with one hand tied behind your back. General oncos aren't equipped to wage war on myeloma....in my opinion. Set an appointment with the Huntsman...it'll be worth it.
PS: I think burning hands and dry mouth are amyloidosis related as well. Oh and yes, the steroids could very well be the reason your counts were lower.
Best of luck to you
DougC
Last edited on Wed Oct 14th, 2009 06:37 pm by DougC
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Chat Moderator
Administrator
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Posted: Wed Oct 14th, 2009 06:32 pm |
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Hi,
Seeing a doctor who specializes in myeloma and has seen thousands of cases will be key to getting an accurate diagnosis. We recommend you have a full diagnostic workup, including a PET/CT or MRI, especially since you say you have pain in the top part of your spine. The test will tell you if there are any lesions or impending fractures.
The symptoms you have seem to indicate you have myeloma. This may not be the case, though, but if you have an elevated protein level, skeletal pain, and dramatic weight loss over a short period of time, something is wrong and must be addressed.
If it is myeloma, it’s important to get that proper diagnosis so you can move forward with treatment. Leaving the myeloma untreated is harmful.
Please let us know if you have any further questions. Our myeloma specialists at Huntsman Cancer Institute are glad to help. They can run the tests you need so you can know what is going on with your body and, if it is myeloma, offer treatment advice.
Take care,
Chat Moderator
Huntsman Cancer Institute Myeloma Program
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P
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| Joined: | Tue Oct 13th, 2009 |
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Posted: Mon Oct 19th, 2009 04:47 pm |
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Thank you all for your replys. You all have been very helpful. My Dr. has not called me back on my last test results. I know she has them as they have sent me a copy over a week ago. I know I am not getting good care and am getting worst. All of my bones hurt now, especially my hips and knees and the top of my neck can barely turn. I will have to consider going somewhere for a diagnosis but I am so weak right now.
P
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Chat Moderator
Administrator
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Posted: Mon Oct 19th, 2009 06:18 pm |
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Hi P,
So sorry to hear about your bone pain. On the bright side, if you get good and effective treatment, it should take care of these side effects so you will no longer have to suffer from them. That's why it's so important to get treatment.
Take care,
Chat Moderator
Huntsman Cancer Institute
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