I have been on W&W for 8 years now, and my Dr. says that my CLL has been "indolent" in that my labs have been generally abnormal but stable. On my last 3-month follow-up, I mentioned to my Dr, that I have been experiencing increasing Peripheral Neuropathy for some time, and he recommended an IGM test to determine if my levels are elevated.
I received a phone call from my Doc yesterday (not usually a god thing)! and he said that results of this test show that my MAG values are off the chart at over 70,000 TU (titer units) The standard range is 0-999 TU! I was earlier diagnosed with Monoclonal Gammopathy which is a protein often found in CLL patients and other B-cell diseases. But this discovery has me very concerned, and may require initiating CLL treatment, perhaps with a monoclonal antibody such as Rituxin.
Needless to say, the precarious security of watch and wait may indeed be over. We're never ready for that!
Anyway, I was wondering if anyone on this site has a similar issue? From what I have read, Anti-MAG oeripheral neuropathy is very rare, and perhaps is found in only 5% of people with blood disorders. Just another issue us CLL'ers have to be aware of.
Thank you
Len
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LenfromSoCal
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It seems there is no end to the diversity of problems we CLLers can encounter! Of course, it might not be as a result of your CLL but equally, it could be.
Regarding the neuropathy, I went through a series of previous neurological tests to determine the cause of the neuropathy, and you are correct in that nerve tingling and pain can be caused by many things, significantly from diabetes. (which I do not have) Nothing was found, and I decided to live with it. But based on my recent IGM test results, it appears to be directly related to the elevated antibody which can affect the body's own immunity system. Great huh?
Back to Google university for additional nerve destroying research!
I fear my watch and wait may end after only 18 months - this is SLL presentation, so big lymph nodes are giving me trouble.
You caught my attention with peripheral neuropathy; every morning my fingers and hands are troubled until I get up and about - hard to describe, but loss of feeling is certainly an aspect.. I'll ask consultant at next appointment in 2 weeks.
I hope that a good treatment approach is identified for you.
Worth a check, though.. It is very symmetrical and the only exacerbating activity lately has been a lot of gardening - cutting things down, wherein I frequently use secateurs but only with my right hand.
And, though I failed to say so, this goes beyond fingers.. Wrists, elbows, shoulders.. It is a gradual worsening of all CLL related aching joints from my perspective.
None the less I will run carpal tunnel by my GP next time. Thx.
Hi Shedman. Anti MAG (and most other) neuropathy usually starts in the feet. The reason for that is that the signals to/from the spinal cord/feet have the furthest to travel. If you've been gardening then it could be that it's coming from your neck or wrist.
Wondering if you take zinc supplements? High levels of zinc in the blood can cause neuropathy by stripping myelin from the neurones (nerve cells).
I am sorry to hear about the changes in your CLL. The whole process of knowing that we have a malignancy in our body, but not really doing anything about it and just watching is very anxiety producing, to say the least! Over the past 8 years and many, many lab tests and Dr. visits, I never lose the feeling that this time we're going to have to treat the CLL. Fortunately for us, there are many new treatments that are available , many of which appear to be very effective.
For me, the tingling started in my toes and fingers and has progressed to my right ankle and forearm. It is often more prevalent in the morning, and seems to subside a bit after exercising, but is noticeable again in the evening. I was offered medications such as Lyrica to ease the neuropathy, but I opted against it as there are other, not so pleasant, side effects connected to these drugs.
Prior to your next office visit, ask your Dr. if he could run an IGG/IGM blood test to see if there is an increase in this antibody. Peripheral neuropathy can, however, be caused by many things.
My best to you, and let me (us) know what your consultant determines.
Thanks. I could envy those not seeing symptomatic CLL progression! 'Lucky' things!
For me, fingers and hands are a pained issue first thing in the morning.. They ease with getting vertical and moving.. Maybe the same applies to elbows and shoulders, just that I don't notice them so much - my shoulders are all the time less capable; less strong, prone to sudden pain with the learning that I can no longer do x, y and z movement or action -- for instance, I can no longer pull hard to get weeds out of the ground.. and getting comfy in bed is a real struggle at times (I am reminded of others here saying they can now only sleep on their backs..)
I hypothesise/visualise that my morning pains are a sign of lactic acid build up over night; that my swelling lymph nodes everywhere, in slowing the lymphatic collection and flow of tissue fluid back to the heart, are adversely affecting circulation.. worse when there is external pressure on me, as with lying down, under a duvet.. As soon as I stand up, without pressure on a large area of my skin and joints, my circulation improves 15-20% and that lactic acid eases
But too much of me -- I'm simply observing these changes and trying to fathom what they mean; is it like a fast version of aging? Where aches and pains accumulate over a shorter span of time than is normal? Those with early onset arthritis have my far greater sympathy. I have no absolute need of pain relief yet, but never say never.
..sorry, more specific reply: I'm due another set of blood work and consult - I'll ask about these things in a couple of weeks.
Sorry indeed that your indolent W&W is likely(?) coming to an end, but, as you say, the treatments available have increased and offer new opportunities and regimens. Nevertheless it is disconcerting learning of progression and of new aspects of one's personal presentation of CLL.
Have you had your vitamin d and the vitamin b levels checked? Worth adding onto the lab slip. My d and b12 were both very low. Once they were in healthier ranges my joint pain went away. Connection? I don't know, but I like where things are now.
I have had tests a year or so ago. VitD 85 (nice and high), vitB I cannot remember, though I regularly take good quality supplement.. I'll see what upcoming doctor appointments suggest.
If you do get tested, be sure to request an IGM reading. Since my reading is "off the chart", there is a very strong likelihood that my neuropathy is directly related. The discomfort started about 3 years ago and I went to a neurologist to confirm that I had peripheral neuropathy, but after a number of tests, the cause was inconclusive. The tingling/heavy feeling started in my hands and feet and is now moving up my right ankle and lower leg making it uncomfortable, at times, to walk.
Many folks with CLL have an abnormal protein known as Monoclonal Gammopathy which can also show up for other diseases such as multiple myeloma and non-hodgkins lymphoma, however, for most people, there are no notable symptoms. For me it seems that my MG or M-protein is interfering wth the the myelin in my nerve endings and creating the discomfort.
My CLL specialist at City of Hope in Southern California feels that if the neuropathy continues to get worse, that starting treatment for the CLL may provide the anticlonal antibodies required to reduce this abnormal protein, while reducing the excess B cells. After 8 years of watch and worry, I am, as many of us are, ambivalent to get started with treatment, and reading about the many potential negative issues relating to Imbruvica, etc, I am hoping to hold off until treatment is absolutely necessary.
Anyway, I'm just rambling along here, and since I am not a medical professional, I may have incorrectly stated some of the terms above. Thank you for your response, and I wish you all the best.
I don't have a CLL diagnosis, but this is the only post I can find re Anti Mag on any patient forum I've searched, so I'm latching on to you! I also have just been told my Anti MAG antibody levels are raised at 6,000, so nowhere near as impressive as yours, but then my sensory neuropathy isn't as severe . Neurologist is slightly confused (or my clinical picture is confusing is maybe a better way of putting it) as whilst lower limb symptoms are confined to my toes and bottom of forefoot, I also have symptoms in my hands. Usually there's no upper limb involvement until the lower limb symptoms reach knee level, or thereabouts.
The things that bother me the most are
1.being off balance ie walking into door frames, having to use a hiking pole when we go for recreational walks and waddling like a duck with a broad based gait.
2 can't bear walking bare foot for the feeling like I've got a wad of cotton wool stuck under the bottom of my fore foot and the fuzzy feeling in the toes.
3.Until the last few weeks it's not been painful, but now sometimes when my toes get icy icy cold in bed or when we've been for a 5 mile hike it's painful.
Anyway Neurologist is re-checking/checking for diabetes and zinc levels as I take zinc supplements for my immune system and both diabetes and high zinc levels can cause neuropathy. Also other antibody tests (ANA,ENA,ANCA) and ESR looking for autoimmune disorders.
I also see a haematologist who's a touch too "secret squirrel" for my liking, ie doesn't share blood results with me. As an ex nurse I find this frustrating.
I've been having lots of problems for the past 3 years including joint pains,chest pain, extreme fatigue, brain fog, skin infections, anxiety,balance problems, irregular heartbeat. etc. I've lost about 2 stone in weight in the last 2 years and not been trying.
Some problems have come and gone, others fluctuate and some , like the neuropathy and resultant balance problems and a skin disorder of my scalp (sore spots, scabs, hair loss) seem like they're here to stay and getting worse. I take the antibiotic Lymocycline for it's anti inflammatory effects.
The thing that triggered a haematology referral 2 years ago was extended clotting times discovered when I attended A/E with a painful,swollen calf. Tests for DVT were negative but clotting was mildly abnormal and remained abnormal for 3 months.
By the time I had the haematology appointment 4 months later the clotting was back to normal but they discovered the monoclonal gammopathy, which is IgM kappa.
Becuase the level was so low, this haematologist sked the GP to check it every 3 months and discharged me but a year ago, because I had ongoing symptoms and the level was increasing, I asked to be re referred, but unfortunately the haematologist I see now is at my local hospital rather than at the regional hospital which has more specialist teams. The neurologist I saw last week visits the local hospital from the regional hospital .
Interestingly, I stopped taking venlafaxine about 8 weeks ago and the neuropathy has got noticeably worse since then. I thought it might be due to the fact that venlafaxine increases serotonin levels and serotonin is a neurotransmitter. Neurologist confirmed this and said that they use venlafaxine to treat neuropathy, so after going cold turkey it
I do know that my IgM level is above normal now whilst the IgG and IgA levels are below normal.
None of my "usual" blood tests have been abnormal apart from my kidney function went a little wonky for a while at the time when my clotting was abnormal and 4 years ago I had protein and blood in my urine (from lab' microscopy, only trace of protein in urine dipstick test) but GP didn't follow up on this and I only found out about it 2 years later when I went back (had moved and changed GP's) and asked for copies of test results. Since then I've had dipsticks done which are negative, so nobody will send off urine to the lab!
I have some signs of liver problems, ie fatty stools and classic palmar erythma (red palms) but LFT's were fine , or at least they were a year ago.
It's taken me 3 years to get this far but at least now I feel like I'm being taken seriously.
It's not good being post menopausal and an ex nurse with a history of anxiety of depression!
I'm assuming that you also have an IgM kappa paraprotein that's quite high and also other abnormal blood tests and a bone marrow biopsy that lead to your diagnosis of CLL?
TBH- it's a bit of a minefield when they find one of these Monoclonal antibodies. Possibilities like Waldenstroms, CLL etc etc. it seems that some doctors are fixated on using investigation results ie paraprotein levels as the indicator of the presence or absence of any condition, despite any symptoms we may have when a lot of the articles I've read say that even if we only have tiny amounts of paraprotein but symptoms, like neuropathy, then further investigations should be carried out. Not that I relish the thought of a bone marrow biopsy or treatment either, although happy to go back on Venlafaxine if they rule out diabetes and high zinc levels.
How will they decide whether to give treatment for the neuropathy?
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