new symptoms
 

hello.... i was diagnosed with pm 5 years ago.... all i know is my neurologist said i had mild neuropathy.. never said what kind my main symptoms were burning feet and somethimes hands ocassional burning in my shoulders .. i haven't been back to him since........ my pain was never that bad 1-3 usually... it stayed pretty constant and actually seemed to improv and stayed the same for 5 years ... this past month i've been getting burning many more places.. feet top of feet , legs shoulders etc.... still not terrible pain.. but i'm freaked out again and very anxious.... i asked my neurolgist 5 years ago my prognosis and he said good... that it is very slow developing.... could it suddenly get much worse .... i'm hoping it is ajust a flare but its been almost 2 months now.....can it improve like it did before....or does this mean its progressing i have a appointment with a new doctor next week....i don't have my old records because my old doctor passed away... also if someone could give me some coping tips or a link it would be appreciated... thank you

Hi Jon. Do you know how the doctor determined your diagnosis? What type of tests did you have? Did your doctor tell you what the cause for your mild neuropathy was? (this is different from the type) For example are you diabetic or had you hurt your back, etc.?

Yes, from what I know it is not unusual for symptoms to spread, but they can also improve again. It sounds like you are not on any supplements or medications and many of us have been able to see our symptoms improve quite a bit once we found out what works for us.

You have an appointment next week. It would be time well spent if you went into this appointment with some questions. It would be good for you to take notes at the appointment. I don't know if there will be time before your appointment to help you with that. I will if I can. There are many on this group that can help guide you. You are not alone.
pinkynose

Thank you so much.. He said it was idiopathic.. Test performed I believe was a nerve conduction test that showed I had pn my initial symptom was skin burning in my torso area .. He did a variety of touch tests and tuning fork.. I think all my muscle tests and touch tests are normal.. The only info I have was my a1c glucose test was 6.0 and my b12 was 473... Test taken last month my fasting glucose was 104. My current b12 is 1039.. Supplements I take are alpha lip pic acid 600 b12 2500 mcg subligual and uniquinol... Although. I'm getting more burning in different places the pain level is about the same.. Just more frequent
My anxiety is way high... I have health anxiety and I start thinking the worst possible outcomes.. Maybe the anxiety worsens the symptoms.. Hope this helps thx again

also i'm not taking medications.... when first diagnosed i was given elavil, and had bad reaction to it..... also given temazapan for sleep which i quicly got physically addicted to and had a nightmarish withdrawal from... so i want to avoid taking medications if i can

Jon, just throwing this out there, have you looked into inflammation? How is your diet of late, have you been eating anything different or unwise? Sometimes people mistake inflammatory response for neuropathy.

no i've been watching myself pretty good.. i seem to have more good days than bad days and since these new symptoms started i had a good two weeks stretch of very few symptoms.... the pain really isn't that bad on a 1-4 scale athough at night sometimes more.. but i've been a nervous wreck can't sleep.. i tend to think the worst... like can i suddenly be in horrible pain all day long... my neuro when first diagnosed said it is very slow progressing and i had a good prognosis... and said it was mild neuropathy...

I'm glad your burning is about the same!
 

Idiopathic just means he doesn't know the cause. I would press your next doctor to work with you to try and find it.

According to Mayo Clinic (http://www.mayoclinic.org/diseases-c...s/con-20033091) a result on a1c between 5.7 and 6.4 percent is considered prediabetes and a fasting blood sugar level from 100 to 125 mg/dL is also considered prediabetes. I would start with a change of diet. That alone can make a difference with your symptoms. If you want to know more there are many great posts about this subject.

For anxiety everyone is different. I love exercise for that but my condition does not allow it so I listen to relaxing CD's, do things I enjoy with people I love and spend lots of time with my animals.

I really hate the term "prediabetes". Its relatively new and I still can't tell if its there to scare the crap out of you OR to find a way to push metformin on more people who probably don't need it. Not saying I don't agree those numbers mean your diet should be addressed but theres is something to the medical industry labelling things in a way that can really send u into a depression. I wouldn't fret over 5.7 A1c without having fasting and OGTT tests done first. The fasting being slightly above 100 is right at that magic guideline number. I would definitely ask for a 2-hour OGTT, that should confirm issues. Also, have you had fasting and A1C's done in years past? Sometimes you can just have a period where things are out of whack and you can an unusually high reading. Usually, with blood levels it doesnt happen overnight, you see a progression over time. There are some docs who believe that OGTT is the best test I would certainly ask for that. I would also consider getting a glucometer and doing random readings on your own. You can do your own testing and really get a good idea whats going on. Write down when you take the blood, before meals, 1 hour after, 2 hours after, 3 hours after. Take random readings. Take a reading after a high carb meal, or after a low carb meal, etc.. etc..

If your diet is good, i would look into taking high dose Benfotiamine to get your Blood sugar down. Especially in combination with R-Lipoic Acid you should see at least a 10 point drop overall.

We are finding out now that high cholesterol is not the danger we once believed it was. Burt for years people took statins when they had no reason to. All because the medical industry had to prescribe a magic pill to get you to meet a certain magic number. Just don;t let them push onto something like Metformin or the like. You're not in a danger zone. Always try to fix the issues the natural way if possible.

Hi Jon, Although I can't speak to the why you have started to experience elevated pain, I can relate to the anxiety. My PN seems to be related to trauma induced (accident) and laceration of the median nerve on my right hand. Diligence has just started on if this is true, example possible Neuroma, and if there is any resolution. For 5 1/2 years I did not have any pain (tingling, burning, stabbing) other then a very slight numbness/tingling on the bottom of my index finger. Within the past 2 months my whole index finger, part of the long finger, palm, and wrist now experience a higher level of these feelings. That has started my to think the worse.

The way I manage is, exercise, venting to close friends that care, this message board, Gabapentin, Aspercreme w/Licodaine (looking at other options), and breathing exercises when the pain get's to be too much.

I like the conflicting points on prediabetes that the members bring up, to me that type of information is helpful as it provides a person with different views for making an informed decision. That's just me though.

Best of Luck, keep us posted,

Bob

Just for clarification
 

I am not a fan of the newish term "prediabetic." I am NOT recommending Metformin or any drug be taken for this. Studies I have seen have not shown there is anything to be gained at this stage. For those of you who have read my posts it's pretty clear how I feel about Big Pharma.

However, cutting down on sugar (all types) has been a help for many posters, diabetic or not. Personally speaking, my glucose is not at all high but my nerves do not like it when I consume too much sugar. To try and reduce the irritation to my nerves I reduce sugar in my diet which seems to help with burning.

This is a personal matter to me because my brother now has type 2 diabetes. It did not come on over night. He ignored the warnings and my lectures and now he's suffering the consequences. So no, I don't want to scare the crap out of anyone but I also don't think it does anyone a service to ignore possible signs.