NeuroTalk Support Groups - What were your symptoms? progression?

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- - What were your symptoms? progression? (https://www.neurotalk.org/peripheral-neuropathy/181894-symptoms-progression.html)

I would just like to reiterate.... WE ALL HELP here in our own valuable ways.

No one case of PN is like another. There are over 100 causes!

People are all different genetically, and are exposed to different things. Many doctors just don't have the TIME to do what is necessary. And many people don't have great insurance or the money to spend on every test.

The testing lists are LONG...here is an example:
These are the tests Dr. Latov does for patients who see him...
He is a specialist in PN:
http://www.questdiagnostics.com/test...ripheralNeurop

Not everyone gets all these tests. I certainly haven't had them all. I've had the ones for thyroid (my hypothyroid was the trigger for me 30+ yrs ago), diabetes many many times,
ANA autoimmune testing twice for Lupus, Rheumatoid factor,
c-reactive protein, B12 twice and D once. I get the chem panels from my yearly checkup and whatever else the doctor wants then. My PN is rather stable now, it stopped progressing long ago once my thyroid was fixed. I do have some issues with nightshade veggies and MSG in food, so I know what that feels like! I did gluten free for 3 yrs, but later found out it was fructose all along upsetting my GI tract. I have episodes of burning and my left foot and ankle swells sometimes. I also have osteoarthritis, and this complicates matters.

EVERYONE is different. We have seen all sorts of situations here
over the years. The best way to understand PN is to read the posts. Most of them are very interesting... and you will be closer to understanding PN and yourself.

Quote:

Originally Posted by mrsD (Post 944558)

The best way to approach this problem in a younger person with no thyroid markers, or diabetes symptoms with blood sugar anomalies, is to go back to before you had the initial symptoms.

What were you doing then? Any antibiotics in the year leading up to this taken? What were they for and their names. Any vaccines? What hobbies do you have--any with paints, solvents, furniture resurfacing, gardening with pesticides, etc.
Any allergies or reactions to something in your environment?
All details may leave clues. Knowing what triggers you then points to what you may be able to do the stop it or reverse it.

Any drugs you used, RX and recreational? Nitrous oxide at the dentist? Alcohol consumption? Toxins in the environment may be heavy metals like lead, arsenic (well water), cadmium, etc.

Your diet and exercise routine. Shoes? any foot problems?
Diet is important because foods can trigger burning, tingling and nerve symptoms. Gluten is the biggest offender. But nightshade veggies (tomatoes, potatoes, all peppers), can trigger discomfort in some people. MSG in processed foods is a biggie also, because it triggers pain receptors. Some foods are actual histamine releasers. They may be blocked by Zantac, and Benadryl.

Do you have good days? What was going on the day before a good day? Do you have pain 24/7 or only sometimes?

Do you have relatives with PN symptoms? This would suggest a hereditary component.

Are your feet involved? Or only the legs? If the legs only, have you had spinal testing to see if you have compressions along the lumbar, etc?

Some nutrient deficiencies give symptoms. Low B6, low thiamine, low B12, low D, imbalances between calcium and magnesium.
Most Americans are low in magnesium--up to 70% of us.

Medically after all the typical stuff is ruled out, then there are medical tests for antibody status (elevated peptides in the blood make it thicker and sluggish), and autoimmune studies to see if you have Lupus or Sjogren's, or some other autoimmune issue.

You doctor is not likely to do this detective work in detail...it is really basically up to you to do it all.

I have thought and thought and thought about what has changed in my life since I started getting symptoms. I had my last flu shot in 2010 when I was pregnant with my son. He was born and then 10 months after was when I started getting these symptoms. No medications since my labor. I did take the morning after pill but that was few weeks after my symptoms started. In August 2011 we bought our house and were here often making repairs on it then we moved in in October of 2011 which was just weeks after my initial symptoms. I thought maybe something to do with my new house, but my husband and my son are just fine. I also started a new job in summer of 2011 where I went from waitressing so I was on my feet all day to sitting in an office. Symptoms started about 3-4 months after the job change. Again everyone at work cannot relate to my symptoms so I would say it's nothing there. I have my symptoms everyday now...some times during the day it is better than others but it's always there. Shoes make and it worse. If I can I wear flip flops but it's too cold right now. At first I thought maybe it was my new sedentary lifestyle and the fact that I am now about 45 lbs over weight. But the doctors disagree even though they don't have any other ideas.

Thank you. I will check out the lab thing and see if there is somewhere I can go to have the right tests done. I'll check out the supplement information as well. Thanks for all your input! And good luck with everything. I'll keep you posted on my next visit with the neurologist.

Sometimes it is very difficult to know why.

I never knew taking certain antibiotics could cause pn. Now I will check before any family member takes an antibiotic.

Knowing what your glucose numbers are after a meal is important, because while a dr may test you and say you don't have diabetes, you could be spiking after a high carb meal. A dr wont worry until you hit diabetes for sure however if you spike to 140 or above (which is not diabetic) it can cause PN. Anything over 140 can cause damage to body, organs, and pn.

You may have to focus on how to live with it and manage it instead of how or why you have it. Try low carb and see if symptoms get better, like I said, many people say carbs make symptoms worse. I would also want to have more tests on thyroid even though your TSH number is not bad. If you read at the place I posted earlier, you can have a normal TSH and still have thyroid problems.

I'd request some spinal xrays and MRI...

Young women who get PN after the birth of a baby, may have
the following things ...

1) low thyroid comes after delivery of a child...but your tests are not terribly revealing of this.

2) women with autoimmune potential, will have a flare after delivery, or sometimes the first attack ...this is because high hormone levels during pregnancy suppress autoimmune reactions and when this brake is removed, there is a flare. Often the first rheumatoid arthritis, can occur at this time.

3) Spinal issues. Lifting that child up all the time, and sitting at a desk for long periods are stressful to the back. PN that affects the legs and not the hands should be evaluated for back issues.
Mechanical stress on the back, feet and hips can come from lifting children often.

4) gluten intolerance is pretty common. It is not always genetic and can be acquired. Gluten intolerance gives PN symptoms in some people. If you go gluten free for about 3 months you would see improvements if this is your problem.

5) pregnancy stresses the nutritional status of the mother. The most common deficiency is to Omega-3 status. This is because the mother donates her Omega-3 fats to the fetus for the development of the nervous system (brain). Dry skin, dry eyes, poor hair quality, fatigue etc reflect this loss. You can take flaxseed oil, and fish oil (or krill oil) to replace what you lost.
This may improve your own nervous system which may need those lost Omega-3s, that your child now has.

These are some things to think about as you study your problem. PNs can be environmentally acquired, or metabolically result from some internal medical problem.
And you can inherit them genetically.

Thank you both for all your help! I am going to start today with cutting out the carbs and see how that helps. Today is not too bad yet! Usually my mornings and nights are worse. I have had MRI on my back and neck and they couldn't find anything wrong there. But I do know that those things don't always show up on the tests? That's what I was told. So far the only connection I can make is my newly sedentary lifestyle and the symptoms getting worse. I am making an effort to walk more at work when possible. And ah yes pregnancy and labor stress the body so much! I haven't felt the same since. Omega-3 I can buy that over the counter?

Quote:

Originally Posted by keepingfaith (Post 944774)

I also forgot to mention I have a history of heavy alcohol use. I know this can cause PN, however I was told I'm too young to feel those effects already. I was a daily drinker for about 5 years or so. I quit when I found out I was pregnant and didn't start up again until he was about 6 months. I just recently have cut back significantly. I now drink only a few days a week but I'm working on this as well. Prior to my daily drinking I was a social drinker since high school. I'm 25 now. A day after drinking will usually leave me with bad burning legs and hands.

Yes omega 3 can be bought over the counter. I buy my flax seed at a health food store. Buy a good kind. I love how it helps my pms and cycles, among other healthy things.

Also, if you are a high carb eater, going low can cause headaches and withdraw at first. I went cold turkey, meaning no carbs for 1 week to get it out of my system and get through the cravings then added back only healthy carbs (whole grains) and only 30g a day. For someone like me, I was a carb addict so I experienced headaches and severe cravings for the first 3 days.

oooooo O.O.... drinking alcohol stresses the Thiamine pathways.

You may be genetically prone to this problem. Benfotiamine is the best for people with drinking history. You could start with thiamine from the drugstore. 100mg 2 or 3 times a day ...regular thiamine is very inexpensive. But it has an odor some people do not like to have---rather yeasty.

Benfotiamine by Doctor's Best is available at all the quality discount online places...iherb.com , Amazon's, etc.

If you start with this form, 300mg a day for a month or so, then when you feel better 150mg a day should be enough.

Thiamine is necessary for carbohydrate metabolism too, so if you eat carbs and sugar you need more thiamine.

Peripheral Neuropathy