Been awhile since I last posted but still nothing new. I have since been referred from neurology in July to rheumatology in September and October with me being seen again by neurology in January.
The rheumatology doctor basically said he thinks I have fibromyalgia based on my pain and there isn't any swelling for rheumatoid arthritis or lupus, but he said to keep your appointment with neurology for January as well because he wasn't completely sold on it. By this time I have been having severe stiffness and pain in my thighs and calves to go along with numbness in my feet. I was prescribed Lyrica (pregabalin) and baclofen for this, which helps but minimally. I told this to neurology and they basically just wrote me off and said we don't see any evidence of neurological problems. So they told me to go back to rheumatology in January as well. That doctor is sure that I had fibromyalgia due to trigger points and possible lupus. Blood tests were ordered for that and all those tests came out negative except for low IgM value. That was 60 with range of 65 and above normal. WBC, CBC with differential were all normal. Complement C3 and C4, ANA negative. I am assuming he will stick with his fibromyalgia diagnosis since I have not heard from him and my next appointment is in May.
Basically it appears I don't have an autoimmune disorder but that doesn't explain the low IgM value.I did obtain my medical records to see if there is anything that they aren't telling me and the neurology states that they would repeat the kappa ratio tests and if positive refer me to hematology. They didn't mention that test or any possible referral when I last saw them and when I brought it up, she said haven't we been over this, those values don't matter because of the negative test that was performed with it. You could tell she was annoyed. I think it was because her fellow resident doctor probably told her that she thinks I may have multiple sclerosis due to the siffness and pain. The attending doctor came in and performed tests like she was pissed or something. Basically like why am I here even though they told me to come back. It was bizarre and I am glad I do not have to go back.
So out of all the blood tests I have had, only the kappa ratio, low lambda, and low IgM values have been abnormal. Do I need to still be worried at multiple myeloma or do these tests not mean anything?
I think I am at the end of my patience with all of this. Over a year with these problems with progressive symptoms that no blood test can explain. Any input from anyone would be appreciated.
Thanks
Forums
Re: High kappa / lambda ratio - worried
Have you been checked for Lyme disease? Muscle pain, joint stiffness, and nerve pain are all symptoms of a tick-borne illness. It can't hurt.
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: High kappa / lambda ratio - worried
It's been awhile since I last posted.
No I haven't been checked for Lyme, though I doubt that is a possibility given I live in Southern California.
Right now I still being seen by rheumatology. The doctor is great as he has really been trying to find out why I have numbness and specifically pain in my spine area, and now my left arm has been hurting for a few weeks now. It's not anything cardiac but more of like bone pain. It literally felt like I broke a bone in my arm one day and it seems to be related to my spine area. He seems to think it's more muscle related and I am having muscle spasms, but that doesn't account for the pain in my forearm that feels bone bruise. I haven't done anything to account for that except go to the gym.
I am waiting to be scheduled for a brain MRI. This is something that neurology didn't order for whatever reason to try to rule out MS based on my numbness and cramping that I have had for about a year. Hopefully the brain is ruled out and I can stop worrying about possibly having MS. The were really only focused on ALS patients, which is fine, but at least rule that out before saying they can't help me anymore. Numbness, quick reflexes, cramping, fatigue, unexplained neck and back pain. All symptoms of MS, but yet they didn't want to order a brain MRI. Bizarre. I guess it's because I didn't fall down as I walked down the hallway.
In the meantime, I am going to a pain management and physical therapy to try to see if it helps with my neck pain. Both of these I think won't help as I have had these conditions for a very long time, which I kind of just ignored up until this point. I also feel like it's just going to be another fee I have to pay.
If the MRI of the brain is negative, maybe I will have him repeat the kappa ratio test. Honestly, I kind of forgot about until I started having bone pain in my left forearm for unknown reasons.
No I haven't been checked for Lyme, though I doubt that is a possibility given I live in Southern California.
Right now I still being seen by rheumatology. The doctor is great as he has really been trying to find out why I have numbness and specifically pain in my spine area, and now my left arm has been hurting for a few weeks now. It's not anything cardiac but more of like bone pain. It literally felt like I broke a bone in my arm one day and it seems to be related to my spine area. He seems to think it's more muscle related and I am having muscle spasms, but that doesn't account for the pain in my forearm that feels bone bruise. I haven't done anything to account for that except go to the gym.
I am waiting to be scheduled for a brain MRI. This is something that neurology didn't order for whatever reason to try to rule out MS based on my numbness and cramping that I have had for about a year. Hopefully the brain is ruled out and I can stop worrying about possibly having MS. The were really only focused on ALS patients, which is fine, but at least rule that out before saying they can't help me anymore. Numbness, quick reflexes, cramping, fatigue, unexplained neck and back pain. All symptoms of MS, but yet they didn't want to order a brain MRI. Bizarre. I guess it's because I didn't fall down as I walked down the hallway.
In the meantime, I am going to a pain management and physical therapy to try to see if it helps with my neck pain. Both of these I think won't help as I have had these conditions for a very long time, which I kind of just ignored up until this point. I also feel like it's just going to be another fee I have to pay.
If the MRI of the brain is negative, maybe I will have him repeat the kappa ratio test. Honestly, I kind of forgot about until I started having bone pain in my left forearm for unknown reasons.
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rluck9974 - Name: Rich
Re: High kappa / lambda ratio - worried
Hi:
Just wanted to give you some information what I have experienced in my treatment. I have the bone pain in my arms (forearms and humerus), ribs and back, like you have described. I was tested for everything – Lyme, multiple sclerosis, Rocky Mountain spotted fever, etc What ended up being the diagnoses was neuropathy and fibromyalgia. I never had neuropathy during my induction, or really after my stem cell transplant, but once all the other healing was done, I still hurt awfully. My oncologist suggested that it was fibromyalgia, and sent me to a rheumatologist. The rheumatologist put me on Cymbalta (duloxetine), which helped a little, but my PCP added gabapentin (Neurontin), and my pain is now tolerable. It's not completely gone, but at least I can function on almost a normal level. I can tell you, though, I cannot miss any of the dosages, or the pain comes back quickly.
Not sure if this helps, but wish you the very best.
Kathleen
Just wanted to give you some information what I have experienced in my treatment. I have the bone pain in my arms (forearms and humerus), ribs and back, like you have described. I was tested for everything – Lyme, multiple sclerosis, Rocky Mountain spotted fever, etc What ended up being the diagnoses was neuropathy and fibromyalgia. I never had neuropathy during my induction, or really after my stem cell transplant, but once all the other healing was done, I still hurt awfully. My oncologist suggested that it was fibromyalgia, and sent me to a rheumatologist. The rheumatologist put me on Cymbalta (duloxetine), which helped a little, but my PCP added gabapentin (Neurontin), and my pain is now tolerable. It's not completely gone, but at least I can function on almost a normal level. I can tell you, though, I cannot miss any of the dosages, or the pain comes back quickly.
Not sure if this helps, but wish you the very best.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: High kappa / lambda ratio - worried
If you're experiencing neuropathy, please consider the possibility of a POEMS syndrome diagnosis. POEMS is a plasma cell disorder with neuropathy (simplified description).
Re: High kappa / lambda ratio - worried
Hi Davenight,
I agree that it's useful to keep POEMS in mind when figuring out what the source of the problem is when someone has neuropathy and a standard multiple myeloma diagnosis doesn't seem right.
However, the reality is that up to 20 percent of people diagnosed with multiple myeloma also have neuropathy (see reference below). So just because someone has neuropathy doesn't mean a diagnosis of (standard) myeloma isn't appropriate.
http://ascopubs.org/doi/10.1200/JCO.2008.18.3087
I agree that it's useful to keep POEMS in mind when figuring out what the source of the problem is when someone has neuropathy and a standard multiple myeloma diagnosis doesn't seem right.
However, the reality is that up to 20 percent of people diagnosed with multiple myeloma also have neuropathy (see reference below). So just because someone has neuropathy doesn't mean a diagnosis of (standard) myeloma isn't appropriate.
http://ascopubs.org/doi/10.1200/JCO.2008.18.3087
Re: High kappa / lambda ratio - worried
Hello,
Been seeing a rheumatologist and have been tentatively diagnosed with ankylosing spondylitis and not fibromyalgia as previously discussed. All of my blood tests have been negative for autoimmune disorders so that's the basis for the ankylosing as this is seen as a sero negative diagnosis. I have signs, such as poor flexibility, stiffness that improves after a few hours. I am also experiencing bilateral hip pain. I have had pelvis xrays, MRI's and left and right hip xrays. All negative. I am not out of shape at all so that's one of the reasons why the moved on from fibromyalgia and other factors.
They have started me on Humira (adalimumab) pen injection which has improved symptoms but has not taken them away completely. I have been on that for about 4 months. During this time however I have developed a mass behind my left knee. Not that big, but big enough to see. It definitely gives me pain and I can feel the stiffness in my leg from this point. My left leg has always been the one that bothers me the most. The doctor said it's probably a baker's cyst and scheduled me for a ultrasound which seemingly went nowhere as nobody ever called me. That was 5 months ago. I also had a recent CBC blood test, I guess to keep tabs because as I am taking a biological drug. Everything negative except for RBC count was slightly high. I see the doctor this Tuesday the 5th so maybe it's a concern but I doubt it.
Seems like the medical center doesn't care about negative results unless it is connected to something else that is negative in the same test or what you are being treated for by that office. They still have not retested my kappa ratio since my initial post. Makes no sense that you wouldn't retest based on the entire time of having all of the tests and different specialists finding no answers for my leg pain, numbness and now left leg weakness. It's a shot in the dark at this point as I basically posted on here after a web search based on my initial results so who even knows if it is related. I don't know if it's completely normal to have the ratio high and lambda low for basically no reason at all. That doesn't make any sense. When I questioned the neurologist she said it was fine and was basically annoyed at me for asking. I doubt a healthy person walking around is supposed to have those ratios off. I am to the point where I may get a second opinion as it's basically cost me around $10,000 in out of pocket expenses over that past 3 years. The medical center is supposed to be a really good hospital but it seems that they are so inundated with patients that they don't have time to even read the notes.
Been seeing a rheumatologist and have been tentatively diagnosed with ankylosing spondylitis and not fibromyalgia as previously discussed. All of my blood tests have been negative for autoimmune disorders so that's the basis for the ankylosing as this is seen as a sero negative diagnosis. I have signs, such as poor flexibility, stiffness that improves after a few hours. I am also experiencing bilateral hip pain. I have had pelvis xrays, MRI's and left and right hip xrays. All negative. I am not out of shape at all so that's one of the reasons why the moved on from fibromyalgia and other factors.
They have started me on Humira (adalimumab) pen injection which has improved symptoms but has not taken them away completely. I have been on that for about 4 months. During this time however I have developed a mass behind my left knee. Not that big, but big enough to see. It definitely gives me pain and I can feel the stiffness in my leg from this point. My left leg has always been the one that bothers me the most. The doctor said it's probably a baker's cyst and scheduled me for a ultrasound which seemingly went nowhere as nobody ever called me. That was 5 months ago. I also had a recent CBC blood test, I guess to keep tabs because as I am taking a biological drug. Everything negative except for RBC count was slightly high. I see the doctor this Tuesday the 5th so maybe it's a concern but I doubt it.
Seems like the medical center doesn't care about negative results unless it is connected to something else that is negative in the same test or what you are being treated for by that office. They still have not retested my kappa ratio since my initial post. Makes no sense that you wouldn't retest based on the entire time of having all of the tests and different specialists finding no answers for my leg pain, numbness and now left leg weakness. It's a shot in the dark at this point as I basically posted on here after a web search based on my initial results so who even knows if it is related. I don't know if it's completely normal to have the ratio high and lambda low for basically no reason at all. That doesn't make any sense. When I questioned the neurologist she said it was fine and was basically annoyed at me for asking. I doubt a healthy person walking around is supposed to have those ratios off. I am to the point where I may get a second opinion as it's basically cost me around $10,000 in out of pocket expenses over that past 3 years. The medical center is supposed to be a really good hospital but it seems that they are so inundated with patients that they don't have time to even read the notes.
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rluck9974 - Name: Rich
27 posts
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