Do you happen to know what exactly it was that your mother had? Just curious is all.

She was also diagnosed with peripheral neuropathy. I just remember from her 40s on she just suffered with pain in her feet and how cold would make it worse. It got worse as she aged, and died 2 years ago at the age of 80. I'm scared that I will suffer like she did since I have it also.

With cold making it worse, I'd wonder if you should have tests for cryoglobulins. Or MGUS. These are antibody proteins that thicken the blood. It can be inherited, but is not like Charcot Marie Tooth inherited types of PN.

Dear Mrs.D,
Before I have my PN symptoms, I always feel cold when everybody around me are not. Everytime I mention this to my primary care physician, she would say its probably my thyroid. I sort of accepted it.

Since I have the PN symptoms, I constantly feel this coldness in my body. Actually, to be more precise, its in the part of my skin where the prickly sensation is felt most. I would feel cold when I yawn (which is very often), when i touch a metal or water AND when I feel cold its more intense because goose bumps will appear in the skin where I feel prickly the most. Although this sensation would only last a few seconds but it happens very, very often (perhaps every 15 mins or less, specially last winter) and the feeling of coldness/goosebumps is uncomfortable. I thought this could be just because of the hypersensitive skin. But now that you mentioned about MGUS, is my "cold sensation" similar to the kind of "cold" you were referring to?

Thank you, as always.

Do you think living in a warmer climate would help with NP symptoms?

Sue

I think the cold from MGUS or cryoglobulinemia is PAINFUL...like frostbite.

The cold from hypothyroid at least for me, is a deep cold, which leads me to making hot tea etc or soup.

PNers here typically cannot stand heat...and prefer cooler temps. We typically stick our feet out from under blankets etc.

When the heat sensing nerves are affected and over work, burning is often the result, and cooling off the area with Biofreeze or a cold pack helps.

The people with the increased viscosity of the blood however, seem to like warmer temperatures.

My feet will become uncomfortable at around 85 degrees.

PN is a mixed bag depending on your particular case. Over 100 types of PN you know!

Does either the cold from MGUS or hypothyroid last long or is it only for few seconds and then will come back again (like a cycle)? The sensation when i have that goose bumps that accompany the cold sensation is uncomfortable but not like the frostbite.

Now that the temperature is getting warmer (at least here in Florida), when the sun hits my skin, particularly the area where the prickly sensation is the most, its very uncomfortable. The good thing about getting warmer is I dont use thick clothes which is good for my skin. Anything less touching my skin is better for me. It gives me the feeling of I am getting healed .

Talking about tea, I never read anything about tea in this forum. I am a tea drinker for as long as I could remember (no coffee). I limit myself to green tea (decaf). I hope there is nothing in the tea that is bad for the PN.

100 types of PN?? Wow. How l am ever going to be diagnosed? So many to choose from. Will they find out where it's coming from? I really, really hope so. Then at least l can work on healing myself instead of being stuck with this.
My husband said yesterday, that we will not give up till we find out why l would have PN? Not even sure l have it, but it sure looks that way. Even though it can be something else.

On Wed l see the neuro, l just have this feeling his going to play it down, like it's no big deal and send me on a couple of tests and say, they don,t know why l have it and that's it. Well, where does that leave me? It's just to easy for them to brush it off like it isn,t a big deal, because for me it is. They see so many patients and it just feels like we are another number to them.
I really hope this isn,t going to be the case. Last time l saw him he told me, to seek mental help and to go on med for anxiety. Has he ever thought that the reason l am anxious is because nobody could tell me what is going on with me?
Dizzy everyday ( back then) would make anyone go anxious.

Sue

hi
Ride-on l had a great birthday. But l had a terrible sleep that night. I had 2 glasses of champagne. During the night l woke and my heart was pounding so hard, l thought it was going to jump out of my chest and l had hot feet again and hands. But then on Sat night l went out to dinner at friends, and l had 3 glasses of white wine, and l was fine that night. Go figure. I am not as anxious now as when all this started 2 weeks ago, so l am getting there. Probably also because l am seeing Neuro on Wed and l know its not to far now to actually see if l have PN or not.

Dr Smith, l do keep a diary and have so for quiet some time, since l had my dizziness episodes. You were saying 30% of patients the cause cannot be found. Wifes neuro told me the opposite she said that 70% of patience the cause of PN cannot be found. So now l am completely confused.

Also you were saying to treat the symptom, but if the cause can be found, you can then treat the cause of your PN?
I also don't blame the doctors entirely.


mrsD-l guess when you first find out you have PN, you need to rely on somebody,and that someone is the doctor. If l didn't have this appointment coming on Wed, l think l would break down. I need to think, that there is hope, and that he may be able to help me. Like you said there is always research being conducted to find out more about this, so we have to at least hope they find something, and then put our trust in them. Otherwise what is the point of going to them in the first place. My neuro, is the only one who can probably diagnose me, so l have to trust him. The thing l dislike about doctors is they are so quick to give meds. I am not one for meds and usually have to be in immense pain to take any kind of meds. I am not saying Natural is always the best either, as l have adverse reactions to natural vitamins and minerals as well. I think diet and lifestyle are the main things we should look at. Which l have done most of the time, but have let loose here and there, and probably pushed my body too hard at times. i have learnt so much from all of you, and l suppose l won't stop learning. Its not always easy to find time, with twin girls, but l need to do this for myself and my family. I have been a pain for them in the first few days of this, but now l am back to normal, l still have it in my mind all day and night, but l am more calm. This has definitely made me more aware of my drinking and eating habits. As l have suffered with a bit of an eating issue all my life and that will too much wine, the body can only take so much. My body is probably nutrient deficient, and wine would make it even worse. So now l am eating regularly and more food in general. i don't care if l gain some weight, l just want to be healthy again. I have been slim all my life, but l have had to go hungry most of the time. Most people comment on my figure and say l look great, but at what cost? I may have ruined my health, for vanity. Just not worth it. So now l am trying to eat breakfast and lunch and dinner each day, even if l not hungry, so l can try and get more different foods in my daily diet. I want to eat more beans, legumes, sweet potato and seeds, and more yogurt as l don't eat enough of these kinds of foods. I usually just stick to protein and veggies, in one meal per day. Done this for years and ran 3-4 times per week. Many times l was starving but didn't eat. My body is trying to tell me something, and this has been my wake up call. Not to mention the message l was sending my girls. I did eat more on weekends but still waited till 5pm to eat each day. Not normal is it? Scared to eat that was my problem.

I feel much better now, my symptoms have settled down. If they stay like this forever, l can live quiet happily. I can only think for today, and not worry too much about tomorrow, as long as l keep clean living and eat healthy and not drink too much and stress l think l will be fine.

Thanks again, you are fantastic, l love this forum so much. This has really helped me regain control.

Sue

Warmer than what? My feet used to burn when they got cold; they used to burn when they got hot. They're still more sensitive to both extremes.

I think this is something you'll need to find out & decide for yourself, because this thing hits different people in different ways. You might start paying attention to humidity and barometric pressure as well. If you can't catch your local weather report, there are plenty of online sites (and desktop widgets) that can give you that info at a glance. Some even have things like allergy and arthritis indices. More stuff to include in a pain journal (if relevant)

Doc