Hi everyone. Need some advice please. I'm w and w for just over 2 years now. No treatment yet. Getting myself worked up as I have had tingling in both my feet and one of my hands. My hand is the worst and feels exactly like when I had carpal tunnel syndrome in the other had. I had carpal tunnel release on that one and it's been fine for 15 years now. The tingling in my feet started about a week ago. They are not numb. It feels like I've been walking in shoes with a thin sole for miles. Sort of fizzing in the soles. I've convinced myself it's peripheral neuropathy. Is there any thing else it could be? I am a glass half empty type of person and I'm always waiting for the next problem so I might be jumping to conclusions. I've got an appointment with my GP on Wednesday. Thank you for being there.
Peripheral Neuropathy : Hi everyone. Need some... - CLL Support
Peripheral Neuropathy
The following sight is about the causes of peripheral neuropathy:
medicalnewstoday.com/articl...
The most know cause is diabetes, but B-12 and folic acid levels can also be a cause.
Ask you GP about those possibilities and any other that may relate on the above site.
Let us know the outcome. The sharing of info helps us all.
Thank you for sharing this concern.
Hello Cindy,
I'm sorry to hear this is on top of your diagnosis. I started having zapping in my toes and fingers 2 years ago and slowly lost sensation. I developed other random symptoms over the next year, and my salivary glands went dry. Sjogren's was suspected but blood work was negative. EMGs showed loss of feeling but within age-related range (I'm 73). A neurologist believes it was autoimmune-related and called it a mild, undifferentiated inflammatory condition. My symptoms have backed off and I am slowly getting sensation back. It remains a mystery to me; unnerving for sure (pardon the pun).
Marcyh
Dx '06, watch & wait, treatment naive
Hi Marcyh
Thank you for your message.
I hope my symptoms do not get any worse as I had trouble sleeping last night. My feet were so hot and tingly. I will be happier once I see my GP and find out if I have diabetes 2.
I'm glad your symptoms are easing off now. Hopefully you will get all your sensation back eventually. We watch and waiters don't need anything else to contend with.
Take care
Cindy.
Hello there - I am stage 1 w&w and had this same thing - which comes and goes. Mild numbness down one side and a kind of priclkling popping sensation in my leg. Having severe scoliosis doesn't help so I visited my GP who suggested it was my back as I have 2 curves - and some intermittent hip pain. It's weird as sometimes I feel like my leg will give way when walking and I have pain on walking upstairs sometimes. Funny how mine is just down one side. Am trying to be more active to see if it will ease
Am seeing my consultant this Friday and this will one of my questions on the list. Will let you know what he says.
Hoping things have subsided for now for you?
Hi Kath
I'm at the GP tomorrow to see if they can tell me what's going on.
I suspect it might be diabetes as I have other symptoms that correspond to that.
Yes let us know what your consultant says.
Take care
Cindy.
Hi Cindy I have just been looking up diet and neuropathy and an figuring out mine maybe worse after eating a higher dose of sugar also? Was just about to tell you that - so let us know how you get on also. I have had a suspicion re mine for a few weeks too.
Looking forward to hearing how you get on. There is always something testing us and our resolve! xx
In Oct 2017, I finally had my Scoliosis surgery. T-1 down to and including S-1. Unfortunately, I did not get the chance to ask questions and now I can not get my lumbar blocks for my Complex Regional Pain, aka, RSD. Years of steroids to treat my RSD caused severe Osteoporosis and Scoliosis started in 2009 and rapidly progressed to point of lungs being compressed and affecting breathing. A rough surgery to go through but praise God, no more horrendous pain. I was 70. Highly recommend surgery but ask tons of questions before doing it. I live alone and not being able to bend over is rough, especially if you have pets. I jave peripheral neuropathy from the RSD that is diffetent than normal causes of neuropathy. Having numbness now but need to see spine doctor for 1 yr post op and see if thete is a problem causing the numnness. Just wish I could do my lumbar block. Also did lumbar epidurals for pain of Scoliosis. Havong these issues with tge CLL just adds to everything. Prolia injections are terrible on the mouth, jaw anw and teeth. Use only as a last resort. And Prolia is primarilynused for bone cancer. Seems we try to fix one thing and end up causing another problem to deal with. I hope CLL isn't causing the numbness.
Yes you could be right kath. I am a bit of a sweetie addict 😳 I will stop eating sugary snacks for sure. Even if it isn't that I still should be eating healthier. I am about 3 stone over weight and if the doctor says I have diabetes now it's my own fault. Comfort eating to cheer myself up has just made things worse. A lesson learnt!
Take care
Cindy. X
Hello Cindy ,
I know exactly where you are at from personal experience. About three years ago I started undergoing tests for suspected peripheral neuropathy , suffering similar symptoms to yourself , particularly little or no sensation in the soles of the feet and also, as mentioned in another reply,the leg (the right one ) would " give way" and I would have to stop and sit down for it to recover which usually took about 10 minutes. Walking up and down steps was another problem. Having had numerous blood tests , it was then discovered I had CLL but still no explanation of the other problems. Went to the neurological department at John Radcliffe, Oxford who carried out tests on the nerves in both legs and discovered they were both damaged- particularly the right leg. This was followed up by a MRI scan which discovered that the problem was in the back the spine openings had narrowed and thus the nerves were being damaged. I had a spinal decompression operation which went very well and although two years later I still have a tingly sensation in the soles of the feet , the legs are much steadier . The consultant did say that the damaged nerves should recover but they could take at least 12 months.
Hope they find a reason for your tingling and that its not peripheral neuropathy
Thank you Richard.
Sometimes when I get different problems health wise I try to forget about them and usually they correct themselves but I do think this needs investigation. I just hope it's not peripheral neuropathy. I will post what the GP says tomorrow. I'm glad yours is improving and hope the tingly soles don't bother you too much. Take care. Cindy.
Mine started when I got on Ibrutinib. I will start therapy at the end of this month. Doctor feels he can resolve it.
I hope you get it resolved. I'm worried that if I already have it before treatment what will happen when I need treatment? It could get worse.
Just an update. Been to GP and she has arranged a fasting blood test to test for diabetes, thyroid, vitamin B12 and calcium deficiency. Not due for another 10 days. I'll keep you all updated in case anyone else had similar symptoms. Cindy.
Strange dizziness - anyone else get this?
WBC & ALC dropped dramatically and I feel absolute rubbish
FCR for IGHV unmutated 
Watch & wait....its a love - hate relationship
Zanubrutinib My doc wants to start me on this when my numbers are good 
