NeuroTalk Support Groups - Advice on getting a more specific diagnosis

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- - Advice on getting a more specific diagnosis (https://www.neurotalk.org/peripheral-neuropathy/221478-advice-getting-specific-diagnosis.html)

Quote:

Originally Posted by skboren (Post 1147800)

Hello! I am brand new here. I've been experiencing PN for probably 10 months, but only constantly for about 3 months. It began just as a feeling of parts of my hands tingling sometimes in the mornings for an hour or so, and then it would go away. But it progressed to various parts of my hands and feet tingling all day long. At this point I went in, and the doctor ran fasting glucose and A1C. I wasn't diabetic. Then she ran B12 and folate. Those were fine. She was going to run an EMG next.

Then I got pregnant. Due to the pregnancy she no longer wanted to run EMG because no matter the results, whatever drug she would prescribe would probably not be safe for pregnancy. I requested that we do more blood work, as my research shows lots of additional causes for PN that can be diagnosed through blood work. She advised me to bring whatever information I had found to my primary care provider. (She is not my PCP, but I saw her initially, because my PCP is so awesome that she's booked 3 months out.)

So now I have an appointment with my PCP, but it's not until September. Meanwhile, in addition to feet and hands tingling, now my forearms have started to have a burning feeling intermittently, and hands and feet feel intermittently like they're coated in a layer of something like plastic wrap.

I am not sure what to do next. September seems a long way off. I don't want this to progress and do more damage if I can help it. What are the more probable causes of PN, after diabetes, B12, and folate? I know of some websites where you can order your own lab tests. I could order a few, probably, before I run out of money! I just am not sure what to order - the list of causes of PN is a mile long, it seems.

Thank you!!

Hello, I am also new here. I would Contact a neurosurgery group for conditions that affect functions of the brain, spinal cord, and the peripheral nerves, and spinal column. He went to at least 6 doctors and No other dr was able to find out what the problem was and the neuro specialist in the peripheral nerves was the ONLY DOCTOR THAT TOOK THE TIME AND finally found the issue and fixed it after 6 long and painful months.
I wish you luck..

Hello skboren, have you had your potassium levels checked? I also went through a period of excessive tingling in my arms and legs and found that it was a parasthesia caused by low levels of potassium.

Quote:

Originally Posted by mrsD (Post 1147882)

You can get the methylation DNA testing now, so you know for sure. 23andme does it OTC and is online.

I've actually been tested for MTHFR, and fortunately I'm only heterozygous for the less problematic mutation, A1298C. I have no copies of the C677T, which is the more severe one. A recently RBC folate test showed that in healthy range, which was a relief because with the side-effects I was having, I was worried about the baby. But I should check RBC folate again in six months to make sure I'm actually metabolizing folate from food!

Quote:

Originally Posted by mary212121 (Post 1147898)

Mary, thanks, I'm so glad you were able to find a specialist who would take the time to figure things out! And FIX the problem, no less! That's awesome.

Quote:

Originally Posted by Auntie Audrey (Post 1147908)

That's so interesting. Did your potassium show low in serum? My potassium is normal in serum, but I have done periodic hair and urine mineral tests, and my potassium was very low in both hair and urine in my last tests, which were a few months ago. So I've been supplementing 3 tablets per day of potassium chloride 99mg, and trying to eat lots of potassium-rich foods, without change in symptoms, perhaps because I need to supplement a higher dose. Did you take potassium supplements to correct the deficiency?

Well... the skinny on potassium tests is this:

If the sample is mishandled or taken with a butterfly thin needle because of small veins... the red cells may burst and dump potassium into the serum.

This can result in factitious elevations (false elevations).

1) an actual low serum level may read as "normal"...

2) or a normal serum level may appear as "elevated"...

300mg of extra potassium a day is not much. You can get 800mg from a V8 12 oz. can, or over 1000 in a LowSodium V8 12 oz can. 1/2 of a cantaloupe as about 1200 mg in it.

Today's RDA for potassium is about 4500mg a day from food.
This handy website has nutrient values for many foods:
http://nutritiondata.self.com/
Be sure to check the upper left corner for each entry for serving size.

When I had my hands evaluated during my pregnancy... I had one wrist injected with a local steroid (the doctor assured me it was okay for pregnancy)...I declined my left hand.
And the doctor gave me wrist braces to wear to take the pressure off the carpal tunnel, and that helped alot. One wears these at night especially but I wore mine 24/7. But I did have to give up crocheting...and other hand work including cooking. I couldn't lift pots off the stove. I have to confess the pain from this was unbearable. It was like having boiling oil poured over my hands. The braces stopped that aspect, for me at least.

My understanding is that the A1298C mutation is concerning in its own right.

http://doccarnahan.blogspot.com/2013...-big-deal.html

Hi skboren, the lab where my potassium blood tests are run uses a value of 3.5 to 5.1 mmol/L as a normal range. I had my levels checked a few times, even once in the ER, and they always came out either a 3.5 or 3.6, or at the low side of what they consider to be normal. I decided to supplement anyway with potassium gluconate (99 mg of elemental potassium), 5 per day, and in a short time my parasthesia was gone. So I was deficient in potassium even though the blood test indicated otherwise!

In my case, I believe I became deficient in potassium due to using a diuretic which I have since ceased taking. Now I try to monitor what I eat carefully to make sure I get the recommended daily dose of 4700 mg of potassium.

One can lose potassium also thru the bowel. If you have periods of loose frequent stools or diarrhea...potassium is lost that way.

The potassium in the body is excreted into the upper colon, as a storage place....it is slowly resorbed as the stool moves thru. If there is fast transit, frequent laxative use, colitis, Crohn's, or any reason for diarrhea, that potassium is lost before it can be resorbed.

Potassium is fairly common in many foods though, so low levels can be from too much caffeine or use of many prescription diuretics, or steroids, or long term antibiotics.

Some forms of renal tubular acidosis will lose potassium (some other forms conserve it).

Testing low in potassium is likely to be an accurate reading, as it is not high enough to be factitious.

People with severe anemia, who begin to take B12 may develop a temporary low potassium, as the bone marrow hoards the potassium to make new red cells. This usually stops as soon as the blood count rises.

Since I only usually eat small portions of food, I need to make a conscious effort to make sure I get enough daily potassium. I like fruits such as bananas, cantaloupe, and red grapes.

Vitamin Water Zero also has a Revive fruit punch product that contains 880 mgs of potassium per 20 oz bottle and there is no sodium or sugar in it.