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Old 06-11-2015, 10:05 PM #1
skboren skboren is offline
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Default 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!!
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Old 06-12-2015, 08:59 AM #2
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Welcome skboren.
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Old 06-12-2015, 09:13 AM #3
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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.
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Old 06-12-2015, 09:19 AM #4
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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.
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Old 06-12-2015, 09:21 AM #5
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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.
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Old 06-12-2015, 09:27 AM #6
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Quote:
Originally Posted by Susanne C. View Post
The symptoms that you describe are very similar to the early sensory symptoms I had with CMT ( hereditary neuropathy ).

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?
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Old 06-12-2015, 09:28 AM #7
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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.
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Old 06-12-2015, 09:37 AM #8
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Quote:
Originally Posted by mrsD View Post
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.
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.
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Old 06-12-2015, 09:43 AM #9
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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.
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Old 06-12-2015, 10:34 AM #10
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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.
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