I need help from anyone who is also suffering with neuropathy, mine hands, legs, feet. Any suggestions most welcomed. Been to 4 different neurologists practices, no help?
Had this problem before treatment.
Anyone suffering with neuropathy ?: I need help... - CLL Support
Anyone suffering with neuropathy ?
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Njsailorgirl
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CllcanadaTop Poster CURE Hero
Sorry to hear this neuropathy ranks right up there with shingles, in my book...
How long ago and what treatment did you have...? My CIPN is now chronic, and has been for 6 years...my foot drop is also related. But thankfully it's only in my feet and legs, I don't have neuropathy in my hands, although I can no longer type or play guitar etc... so that might be residual. There was a point where I couldn't button my shirt... ☹️ Tests I have had done show I have lost about 40% of strength in my legs and 65% in my hands, so opening jars requires tools..🛠 I had pain for about a year, but thankfully that has gone.
Here is a good article about it... Chemo Induced Peripheral Neuropathy and it's management...
mskcc.org/blog/managing-che...
Glad to read your reply....very helpful. Watched a couple of the talks using your link. Interesting that there was no talk about gabapectin etc. I tried gabapectin and started to have side effects w little relief. Off it. Tried Lyrica and had blurry vision. Off that too.
I’ve been working out and walking. Will start OT, therapeutic massage and acupuncture. Hoping to get some relief. Neuropathy is impacting my walking and balance.
Forgot to mention that I’ve developed shakes, not tremors. Concerning.
Me too... I have very pronounced tremors now... but it's the mid range of things I have trouble with... like walking... I have no feed back loop in my right side..so tend to walk like I was coming home from a long night at the bar...😄
I can whip open and clean a camera lens, with many tiny screws and parts, no problem, but walking a straight line or using a can opener is quite difficult...
I tried Gabapentin as well.. made my feel very odd, and had no benefit.
It's also strange I can no longer speak on a phone... friends of mine who have drug-induced neuropathy also report this... there is a disconnect between what I hear and what I think I hear... I'm fine face to face conversation, ... thankfully.
I get B12 injections and have for year's, so thats unlikely a cause... my brain was fried... and 4 months of Dexamethasone didn't help much either, but it helped reduce inflammation...
Chris...Your symptoms mirror mine. I too have the "drunk" sailor walk and have taken some spectacular tumbles. I nave my phone of speaker so that Hubby can listen to the conversation especially when it is hospital giving me time and dates for appointment. I tried Gabepentin....did nothing for me 
I was fried by my colonrectal chemo/radiation ....hoping that ibrutinib doesn't make the symptoms worse.
Have you had your B12 level tested? Peripheral neuropathy can be a symptom of B12 deficiency. It's not a bad place to start looking if you haven't already. Simple blood test. And B12 is easy to supplement, should you need it. Good luck!
kim
Yes, both B12 and Vit D recently tested (same train of thoughts) , thanks .... all ok
YES! But mine the last 2-3 weeks seems to have gotten worse. As in sometimes, sitting for 15-20 minutes and my entire foot (I guess from the ankle down) goes numb and I have to rub it SUPER hard for a few minutes before it goes to pins and needles. Mostly it's my left leg, but the right one does too and my hands do too.
This goes on NUMEROUS times a day. My foot was swollen right when it started getting worse too. I'm waiting for an ultrasound for that but I too have been to a podiatrist and a neurologist, the neurologist sent me to someone else to do a certain test and he didn't even find anything!
I'm on Horizant (a form of Gabapentin) and will go to acupuncture over the summer but any other suggestions will be great for me too!
Stay in touch as to your response to acupuncture!!!
Dear NJ,
I have also been suffering with Peripheral Neuropathy for about 4 years now. It started in my toes and has gradually affected my right foot, ankle and lower leg. It also occasionally affects my lips, right arm, and my head can often feels "wonky". Walking can sometimes be difficult. I went through a series of neurological tests and lab work to rule out diabetes (which is often a major source of Peripheral neuropathy) and other possibilities, but nothing conclusive was found.
My CLL specialist recently ran an IGG/IGM antibody blood test and it showed that my IGM/Myelin Associated Glycoprotein (MAG) value is "off the charts! Standard range is 0-999 TU (titer units). My result is over 70,000!! This MAG antibody is directly associated with Peripheral neuropathy and damage to the myelin sheath protecting the nerves.
The good news is that I now am fairly confident that this is the source of my PN. The bad news is that after 8 years of being on watch and wait, It is likely that I will need to begin treatment for my CLL, and monoclonal antibody to reduce the IGM protein. A scary proposition, especially after reading about all of the negative side effects being experienced by the great folks on this site.
Of course, this may not be the source of your neuropathy, but I bring it up as one possible direction to pursue.
All best wishes
Len in Los Angeles
Thanks.,,, had the IGG test done a year or so ago. No problem from that test. Will request it at next visit.
What monoclonal infusion are you referring to for the IGG problem? Rituxan was tried, no improvements. Sorry to hear others w this handicapping issues.
My IGG level is normal, but the increased IGM value is the issue. I had regular acupuncture for a year with minimal results. I continue to take a number of supplements which are supposed to be helpful for nerve issues including Alpha lipoic acid. I am not sure what the upcoming treatment will be, but my Dr. seems to feel that treating the CLL will also have a positive impact on lowering the IGM level, and the ALC. I have read that both Rituxin and Fludarabine are both Monoclonal antibodies, so it is possible that one or both of these may be helpful. But I am going to leave that decision to my very respected team at City Hope in Southern California
I'm not sure how many of us on this site also have Monoclonal Gammopathy which is an M protein that is produced in the white cells of the bone marrow. This has also shown up on my lab tests, and can, for some people, cause nerve issues. In the meantime, I exercise every day and try to keep a positive outlook, but it can sometimes be difficult with all of the unpredictability of this disease.
Thanks. I will asked my doc about The M Protein. New to me.
I had no side effects at all from monoclonal antibodies plus chemo pills. It worked half way through treatment (3 months) I was at stage 4 when it was started, and I am 73. I just made sure i rested a lot, drank a lot of water, and watched diet...and supplements (I take about two times dose recommended for normal and not the gigantic doses people take therapeutically -- a variety of C, Green Tea, B12, E, D -- not all every day. And drops of Hydrogen Peroxide, much less than recommended for leukemia. It boost immune system (C actually works by producing Hydrogen Peroxide which is natural in body) of course must be understood it is caustic at 35 % strength (ingestible kind) and a drop on finger can turn the flesh there into ash. But once you put drops in water, it is fine. I feel better than i have felt in years. So it is possible. Lots of salads, and variety of dishes like pasta, rice and beans, cheese, dairy, lots of indian spices, lox sandwiches, and other fish, inc. sardines. Etc. I still eat cream in coffee, and butter on bread (keep it to minimum) and potatoes etc. All in moderation. I just am giving you my personal data. You may have instincts to do it differently. Just google beyond the designer sites. Look for studies. Many people have few symptoms. I did not even sweat, feel nauseous, have any skin rashes or anything. Kept mouth clean after eating...inc. salt rinses every second day. First minute of infusions had a sudden attack of high BP, hard to breath, so I got up andleft. Came back 4 months later after finding out what it was. Apparently the drugs given before infusion -- antihistamines, anti inflammatory, headache, anti nausea were not given time to work. next time the wise nurse made sure the steroids had 20 minutes to work and there were no symptoms at all, Just felt normal and a bit sleepy. Drove home. Not sure this is useful. But i do hope you are not too anxious, Just make sure they give steroids and other pre meds time to work. You might be just fine. And the neuropathy might even lessen or go away. I had a chronic cough for years. It went away.
Thank you onu1tadi2
I appreciate your thoughtful response. It does lessen my anxiety a bit. Even though my labs have been fairly stable for over 8 years, and still on W&W, I have not been immune from the effects of CLL.
1. I developed a non-hodgkins B-cell lymphoma on the sclera of my left eye which required 3-weeks of daily low dose radiation.
2. I have increasing numbers of Squamous cell cancers on my face and head requiring Mohs surgery.
3. The increasing Peripheral neuropathy due to high level of IGM protein is very uncomfortable,
Add to that the on-going anxiety, for years, knowing that there is a malignancy in my body that is not being treated, and I am hesitatingly welcoming treatment that will, hopefully, get me into a remissive state.
BTW, I am 72 years old.
Best of continuing health.
Hi Leneccee. I had MOHS surgery too years before i knew if i had CLL or was diagnosed with it. First i heard of it was at stage 4. Are you at stage 1 or 0 right now? How did doctor detect that you had CLL?
Hi onu1tadi2,
Being a red head with light skin and light eyes and living in Southern California all my life, I am a poster child for skin cancer, and have had a number of basal cell carcinoma's cut out over the years. I have also had Squamous cell skin cancers which can be more virulent, and if untreated, have the potential to metastasize.
Since my diagnosis of CLL, I have experienced a higher incidence of squamous cells on my head and forehead, which according to my oncologists, can be attributed to our compromised immune system with CLL. Another great bonus of our disease!
I was first diagnosed 8 years ago by my GP following a routine physical. He phoned me about a week after my exam and said that the labs show an increased WBC count (22k) and he referred me to an oncologist at UCLA. A FSH test revealed that I did indeed have CLL, and he said that with a 13q deletion, I have a very high survival rate. Needless to say, I reacted to the diagnosis of Leukemia with great fear and anger. Over these 8 years, my WBC has slowly increased to 48K and my other labs are fairly stable. I am not sure what stage I am considered. I have a great CLL specialist at City of Hope in Southern California, and I see him with great trepidation every 3 months. Being on W&W has its own challenges to my psyche, and I foresee a time in the near future where I will be a part of a clinical trial.
For my skin cancers, my dermatologist has been using a treatment on me called Photo Dynamic Therapy (PDT) in which a photosensitive agent is applied to the pre-cancers or cancerous lesions and then put under a special black light that kills the cells. I have been through this process a number of times, and it seems to be fairly effective. Not really comfortable, but I prefer it to Mohs surgery which can be very intrusive and painful.
Anyway, thats my story, and I apologize if I got a bit wordy. I am with you all the way in this CLL journey. May we both find peace and long remissions.
Len
Glad to read you are doing so well with your treatments. Shared information like yours helps with the anxiety of deciding to treat or not. Of course, with most of us CLLers, treatments come as our CLL progresses. All your dietary tips help, too.
Stay well and strong!
Wishing good days and good health to all.
SMS
JigFettlerVolunteer
I am pleased to see a post on neuropathy. Interesting responses.
I am 3yrs on WnW. 3 weeks into FCR Cycle 1. I know I have had CLL for at least 5 yrs ... in retrospect!
About 5yrs ago I developed parasthesia on the lateral side and the sole of my L foot, including tips of toes. Slightly altered touch sensation. Not entirely numb. Started on the heel slowly spreading. In last year 2 toes on R foot too.
It's not sciatica. It does not relate to any particular cutaneous nerve. I have assumed neuropathy related to CLL. Now waiting with interest to see if it abates on FCR.
My CLL team did not know what this was, nor my GP. I have not seen a neurologist.
Also... while on WnW... I felt my legs were weak. Shoulders arms fine. Walking was an effort. Gym work... squats always hard. That has dissappered with FCR. Along with all palpable Lymph Nodes. Joy! Legs work again!!
Would be really curious to hear more accounts of neuropathy, thoughts and ideas.
Keeping an eye on B12 good idea. Folate. Thyroid function and so on too.
Is there not a danger that all new symptoms get attributed to CLL?? I guess we are susceptible to other diseases as well. How do we best cope with such scenarios?
Thanks..., sounds like FCR may be your friend based on your good news. Congrats
Yes, I was diagnosed with neuropathy in both feet about two years ago. I had no idea it could be caused by my W&W stage 0 CLL. ☹️ Over the past ten years, I have had increasing difficulties with hot, burning feet with the problem increasing each year and becoming overwhelming in the summer heat. I was finally diagnosed with erythromelalgia last September. It is a very rare autoimmune disease probably another spinoff from my CLL. (Also, diagnosed with RA about the same time as CLL diagnosis.). Right now I am having slight pain and discomfort from swollen lymph node under left arm along with multiple joint aches and pains. Wondering if this could be caused by pneumonia vaccine given two days ago??
I do feel blessed that my CLL is at stage 0, but I am finding it very difficult to read your post and all the answering posts about spinoff diseases and conditions.
I am very thankful for this site and all the CLL information I learn, but, NJ, your post reminds me one more time that I really do not know how CLL will effect me as I continue to walk this path. It is reassuring that I can read your post and the answering posts. We are not alone on this CLL walk, and I draw strength and encouragement from that.
Wishing good days and good health to all.
SMS
Three years ago I had a severe reaction the day I got the flu shot. Cannot risk it repeating so no more flu shots for me. Was a scary flu season for me with the rampant flu. Kept myself away from crowds, wearing face mask at doc appointment waiting rooms.
Ditto on your comments about this site. It is a somewhat lonely journey but this site has offered us so much support.
Stay well.
Happy to report, NJsailorgirl, that my left lymph node is no longer achy and painful. Also, neck and shoulder pain on my left side...side of injection...has disappeared. I am very hopeful that my adverse reaction to this vaccine has ended. Now, I wait a month until I can get the Shingrix vaccine.
Sorry to read about your severe reactions to flu vaccine. Flu season must be a challenge for you. Sometimes I’d like to enclose myself in an astronaut-type suit. 😀
Your online name of NJsailorgirl reminds me of all our family vacations to Ocean City, NJ, starting at the age of ten through several years ago. Many years as I am 69 years old.
Smiles and memories galore! Thanks
Wishing good days and good health to all.
SMS
Good news for you. I had the shingles shot a number of years ago. No problem but may have been before dx. Will talk w onc about the new one I learned that the limit of the first vaccine is 7 yrs. I may be about that timeframe
Are you from MD? I am, live in Baltimore. Originally from NJ.
Thanks for your update.
Thanks for prompt reply. Glad to hear no problems from shingrix. I am getting vaccines because blood work by my immunologist discovered that my pneumonia vaccine was ineffective and that I could benefit from shingrix even though I had the shingles vaccine about five years ago.
I live near Harrisburg, but my husband and I were in Baltimore overnight 17th through 18th because of Friday appointment with Dr. Doug Gladstone, CLL specialist at Johns Hopkins, which one of the oncologist in my oncologist/hematologist group arranged. It was a very successful appointment and well worth our travels. I wish we could have spent more time there, because Baltimore is a great city. We do hope to return more frequently.
Fond memories of August 15th, 1969....we eloped to Towson courthouse then meet with good friends for a marriage celebratory dinner in Baltimore. Best thing we ever did! So lots of good memories about Baltimore, too.
SMS
My husband developed peripheral neuropathy in his feet while on ibrutinib (continuing on after he was off it) and it would drive him crazy especially at night. (He’s always had issues with restless legs but this was worse). Sometimes I would massage his feet before bed and this would help somewhat. A friend of us gave him socks from VOXXLife which are supposed to help this and since he has started wearing these he hasn’t complained about his feet. He doesn’t wear the socks at night, but it still is so much better. Not sure if the warmer weather also helps. (We experience very cold Canadian winters). Gabapentin maybe helped a little but not much so he is no longer on it.
Thanks. I’ll look into those socks. Online? Interesting that massage was a relief. I’m going to try therapeutic massage next week, Onco approved.
I have MS and peripheral neuropathy, can no longer walk. My feet are 100% numb, my R side is affected - elbow, hand, knee and foot. I wear leg warmers on leg and arm to cover knee and elbow, fingerless glove to cover hand. The burning is intense but I haven't tried meds b/c of side effects. Thank you for this discussion.
So sorry to learn of your situation.
Glad I posted this question. It has prompted many responses. Once again, I’m not alone. This site allows a distant discussion and much needed support.
Fluoroquinolones. My peripheral neuropathy began 6 years ago before ibrutinib. I had taken one of the Fluoroquinolones (a class of antibiotics) before I knew of their dangers...such as neuropathy and tendon tears. I did indeed have a tendon tear and developed neuropathy in both feet following 2 doses. I have contributed often about them. I reported my cases to the FDA and shortly after, they put a black box warning on them.
Some reading:
webmd.com/brain/news/201308...
The generic name of the Fluoroquinolones all seem to have an 'x' in their name: ciprofloxacin (Alcipro, Ciprobay, Cipro, Ciproxin, ultracipro), enoxacin; Penetrex ... and a slew of others.
Interesting. I was taking Ibrutinib for about 5 months and then developed pneumonia and hospitalized for 10 days. I also read that pneumonia is a possible side effect. Immediately taken off. When home I reported this issue. Didn’t know if that had any impact as to the black box.
Thanks
Yes, I have some neuropathy that I didn't even realize until I saw a neurologist for another issue. He gave me the "pin" test (used a safety pin) and it was obvious I had lost some feeling in the tips of my fingers, and also legs and feet from about mid-calf down. I was not even aware of it, probably because I have no numbness accompanying. Over time the issue with my fingertips has gotten worse, to the point that it's hard to pick up a small pill or turn a page of a magazine. I also drop things ALL the time. My local hem doctor says there is no evidence Imbruvia causes this, but I'm not convinced. I will be seeing my CLL specialist in Rochester next month and will want to know his take on it. What are your symptoms? I've been told there's no remedy. When those nerves stop working there's no turning it back.
I have the same symptoms as most responding to my question.....numbness in hands,legs and feet. Hard to pick up things,open jars due to weakened hand strength. Tried gabapectin and lyrica but side effects occurred and with little improvement. Starting acupuncture again, therapeutic massage and occupational therapy. Hope something helps.
Hope you find relief. Let me know.
This is amazing, how many people have this. I woke up one morning about 20 years ago with both feet and hands numb...like they were alseep. Over the next few months it faded from my hands and most of my feet, but to this day the front half of the souls of my feet and toes are pretty numb....my wife can't even touch my toes it feels like an electrical shock. I can't imagine this has anything to do with CLL in my case as it happened so long ago. I went to several nerdologist who never found anything wrong although they did some test that was like being electrocuted, and told me "it came back normal" but I got a copy of the results years later and it actually said something like "extreme abnormalities, follow up suggested".
Nerdologist are the worst of the whitecoats.
Scott
Njsailorgirl in reply to
Had the nerve test that also came back normal. Later learned that that initial test only tests the ulnar nerve for PN and that by deduction the next test would likely be positive due to patient symptoms. My understanding. Don’t quote me. 😎
I can relate to the sensations described in these posts. I was diagnosed 18 months ago , early stage B and am still on W& W. Several months ago I went to my GP about numbness in both my feet. It started in my toes ( before my diagnosis) and spread quite quickly. I was told that ‘this is what happens when you get older’ ( I’m 57), and was told to come back if it spread up my legs! Six months ago I mentioned it to my CLL specialist who assured me that it was nothing to do with my CLL and he wrote to my GP asking for me to be referred to a neurologist for further investigation. I have not pursued this yet having had enough of hospitals and tests !!! Since then, the numbness has not abated and in the last few weeks, When I wake up my left hand feels as though it has gone to sleep and the skin on my left arm near to my wrist is extremely sensitive / painful to touch. After reading these posts I am going to raise this again when I see my specialist in a couple of weeks. So thanks to everyone for sharing - it’s been strangely reassuring !
Great community!!!
Not every symptom of the hand and arm is simple neuropathy. Before my other issues I also would wake up with totally "dead" hands. Sometimes I would have to reach over with my other arm and throw the "dead" one off of myself! I had nerve conduction tests that revealed carpal tunnel syndrome in both wrists. Had simple surgery and that problem was solved. I wish the neuropathy was as easy to fix.
I am scheduled to have carpal tunnel surgery at the end of July. I was told that I could not get my hand wet for 14 days after surgery. How did you deal with that after your surgery? Any tips?
I honestly don't remember being told to keep my hand dry for 14 days! My memory is that I went back after about a week to get the incision looked at, but during that time I showered with a plastic bag over my hand. The stitches dissolved on their own. One stitch that was underneath the skin came to a bit of a "knot" at the surface, and the nurse said it would either work it's way out, or I could help it along, which I did. Other than that, it was the most uneventful procedure I've ever had. No pain, no scarring, nothing. And my hands don't fall asleep anymore.
Sorry to hear about your neuropathy , try marmite .
Good luck
Hmm marmite ? What is the product to do?
It contains niacin,thiamine,riboflavin, folic acid and B12 amongst other things. Recommended by my geriatrician sister in law for my husband during chemo three years ago. He no longer suffers from neuropathy.
Delicous on toast ....though not to everyone's taste.
Thanks. Worth a try. Like toast anyway.
Very tough problem. I have neuropathy in my feet, yeas of wearing bad shoes. I use an ice pack particularly at night, rub in prescription strength lidocaine and prilocaine cream, and massage in general provide some temporary relief
Thanks for the idea. My PCP didn’t like the idea bc it impacts your hands and she was concerned it transferring to bathroom related activities.
Hopefully you can see a university-affiliated neurologist. A consulting neuro referred me higher up in order to rule out mononeuritis multiplex. That concern was raised because my neuro symptoms - stinging pain and numbness - involved both hands and feet. Thankfully the EMGs did rule it out.
Did see one at JHopkins. Ordered a brain mri and this led to no help but thanks for the suggestion.
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