CLL Support Association
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Peripheral Neuropathy

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 five 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.

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Type 2 diabetes? Glad you are seeing you doctor...

mayoclinic.org/diseases-con...

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Hi Cindy, obviously this is one for your doctor who will be able to do the necessary tests for neuropathy. This isn't unknown in CLL but does seem to more often affect treated patients as the result of the side effects of some chemotherapeutic agents. My first reaction was to wonder about your glucose levels because diabetes causes these symptoms but so does structural problems with your back and a host of other conditions. Including carpal tunnel syndrome which may have recurred in your other hand. Do you have arthritis or back issues? My husband suffers exactly your symptoms as the result of a back issue and he doesn't have CLL.

It's so difficult not to immediately assume CLL is the culprit and we are all guilty of that because it reaches into some very strange places. However, my advice would be to consult your doctor and describe your symptoms. Some vitamin deficiencies can cause the symptoms you describe and they are much more common in CLL. Deficiency of the following vitamins for example;

Vitamin B complex that includes B1, B6, B12 and folic acid

Magnesium

Amino acids: Acetyl-L-carnitine, Alpha-lipoic acid

Fish oils: Omega 3 fatty acids (EPA and DHA), flaxseed oil

However don't supplement without medical advice. Good luck with your GP appointment but don't whip yourself up into a state because this may be something that can be remedied and have no sinister origins at all.

Best wishes,

Newdawn

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Thanks Newdawn. I haven't been eating very well lately so I will up my greens and take a multi vitamin. I have my blood tested by my consultant every three months so hopefully they test for diabetes. No problems with my back luckily. If my other hand needs carpal tunnel release it's very strange that it has just flared up now at the same time as the feet thing but bodies are very strange things! Hopefully my GP will have some answers for me. X

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You require a fasting blood test for diabetes... not part of a CBC.

There is a non fasting A1C test... but not sure how often that is used

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Oh. Ok thank you. Didn't realise that.

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Cindy, Chris is right. The Hba1c test used to detect diabetes isn't routinely carried out as part of your Full Blood Count done by the haematologist so you'd need it done in addition. It's just a simple blood test from the arm and looks at the average level of glycated haemaglobin in your blood over a 10-12 week period. This test is carried out dependent on the level of diabetic oversight required. I only have mine done annually because I've maintained sub diabetic levels since my diabetic diagnosis.

Incidentally I wouldn't bother with multi vitamins because they're too generic and if you have a specific vitamin deficiency, they won't address it. Best to ask your GP about this. Greens and oily fish are a great addition however.

Newdawn

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Please be careful of fish oils... they can cause platelet issues...and petechia...

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I have an appt in July for peripheral neuropathy too. Get RLS at night. I'm new we and my GP gave me an Rx to help sleep at night but I want to get off of it. Let's stay in touch about this. Best to you.

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How did you get on with your appointment NoMoRLS? I've had a spinal MRI which didn't show any lymph nodes pressing on my spine. My consultant thinks it is related to my CLL though as my blood results have got worse. He says I will need treatment in the next two months and that the peripheral neuropathy should get better in about six months. Hope you got better news. Take care.

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HI! I have to go in for 1 more MRI. He sees something in my shoulder neck area and now wants to see a little further down/ Lordy another appt. So tired of all these APPT'S! My onc appt yesterday went great. 6 mos WW and my numbers are better. But I still have crazy symptoms like itching, nausea, tired...etc...so we shall see.

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Good news about your bloods! Hope the MRI goes well. Let me know how it goes xxx

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