Advice on getting a more specific diagnosis
 

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!!

Welcome skboren. :Wave-Hello:

If pregnancy is making you worse... think diabetes, or impaired glucose tolerance, or low thyroid levels.

Low thyroid can lead to terrible carpal tunnel. I had that myself over 30yrs ago. I lost 80% of the use of my hands when I was pregnant. Women can develop hypothyroidism with or without goiter during a pregnancy and after delivery it may persist. I did have an EMG on my arms at my 5th month because of the sudden loss of my hands, and the extreme pain.

Pregnancy will however, often lower inflammatory situations, which will flare after delivery. MS and RA and other arthritis conditions often go into remission during pregnancy. This is due to the high levels of cortisol the mother secretes, to keep immune attacks against the fetus low and unlikely.

Hi, Kitt, thanks for the welcome!

MrsD, thanks for the reply! I think I'll test thyroid then! The PN was progressing before I got pregnant, too, so I don't really know whether pregnancy has had any effect on it. I've actually been using a blood glucose meter to check blood sugars, and if I eat poorly (too many carbs at a sitting) I do notice the tingling is worse the following morning, and that my blood sugar will go into the prediabetic (though not diabetic) range. So there may well be an insulin resistance component to this, even though my A1C was 5.1 and fasting sugar was 96. I've already changed my diet to be much healthier, and cut out the carb overloads. It has fixed the blood sugar spikes, but I can't say for sure whether it's healing the PN. It sure is making me skinny, anyway.

The symptoms that you describe are very similar to the early sensory symptoms I had with CMT ( hereditary neuropathy ). Of course, they are common to all length dependent neuropathies as well, but does anyone in your family, parents, grandparents, have peripheral neuropathy? It is often misdiagnosed and when symptoms hold off until people are older can just be attributed to aging.
In my case I was never able to run or coordinate my large muscle movements well, even as a child, so it can set in at any age, even in the same family.

I would not spend a lot on blood work. Most people do not get a clear cut answer from that direction, and being pregnant may affect your symptoms - retaining fluid may exacerbate them. If you read through these forums you will see that people try a lot of different supplements and diets but outside of that there really aren't treatments for PN except IVIG for autoimmune and demylinating neuropathy, which only applies to a small percentage of cases.

Thanks, Susanne. Is there a diagnostic test for CMT? Nobody in my family has anything similar, even in old age. I'm just weird. I won't spend too much on blood work, but I do want to check thyroid, at least. Is there a way to know whether you have autoimmune and demyelinating neuropathy vs. other types?

Also if your prenatal vitamin does not have the new vegetarian DHA in it... consider supplementing this on your own. Fish are typically restricted in pregnant women because of heavy metal potential.

Some prenatals now have DHA added (an Omega-3). You can also use flax oil safely. Women can get depleted of Omega-3s by the developing fetus which uses them for their brain and spinal cord.

This vitamin is designed for pregnant and nursing women:
Expecta:
https://www.meadjohnson.com/pediatri...pecta-prenatal

Flax is now in some cereals, and the oil, in capsules. The oil itself can be used to make salad dressings. (the bottled oil, should be kept in the refrigerator). Women convert this essential fatty Omega-3 acid into the long chain Omega-3s, which form the nerves in the developing fetus. This would be a good insurance for you (mothers get depleted) and your baby, who is developing the brain, vision and spinal cord.

I probably should find a vegetarian DHA. I've been taking fish oil, which, although this brand claims to be pure, probably that's not true of any fish oil. Hopefully I haven't done damage to the baby. Unfortunately, prenatal vitamins I can't do. I have developed awful reactions to supplemental folate (both folic acid and 5-mthf) possibly because I supplemented it for so long that my serum folate tested ridiculously high, which resulted in side effects. I've just stopped multivitamins completely and am instead eating copious amounts of green leafies and supplementing select individual vitamins.

You can take flax oil safely. Your body will convert about 20% of the flax to EPA and DHA.

There are some vegetarian DHAs with no other vitamins in them.

Naturemade makes one:
http://www.naturemade.com/fish-oil-a...CU0RmK4ATFp.97

And there are many others... just Google DHA vegetarian

If you suspect you have the MTHFR mutation, you need methylB12 and methylfolate. The regular folic acid will not convert in those with this error, and it just builds up in the system. Your baby needs the methylfolate. Most prenatals do not have that form in them.

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

The CMT panel is lengthy and expensive, probably not warranted without a family history. It can also be inconclusive.
Mrs. D's advice is the best. Concentrate on a healthy pregnancy and try not to let this overwhelm you. It can be a frustrating disease, illusive of specific diagnosis. In the end symptom management is often all that can be done.
Sorry that you are struggling with this.

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.

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!

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.

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.

There is DNA blood testing for CMT. One place is:

http://athenadiagnostics.com/conditi...ral-neuropathy

It is expensive if you have to do all of the DNA blood testing for the many types. But just because you may not test positive for any types that they now can test for does not mean that you do not have CMT. And as far as family history, there might be no noticeable symptoms at all.

There is a # that you can call at the site. Perhaps they can help you. I am not at all suggesting that you could have CMT.