NeuroTalk Support Groups - Back from my appt.

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Back from my appt. (https://www.neurotalk.org/peripheral-neuropathy/133625-appt.html)

Back from my appt.

My test results are negative for lupus and RA. I asked for my B - 12 number and it was 536. He didnt test for vitimin D. He is sending me to a Rheumatologist and said they would do more advasive testing. He gave me Morphine 15mg 3 x a day and refered me to pain management. So that was it in a nutshell. So on to the next step.

Thanks for all the advice and if there is anything special I need to ask the Rheumatologist please let me know :D

I would ask for the Vit D test. We had a young woman here a short while back who just had her 4th baby, and when she started to exercise after delivery, her feet became very painful.
Her Vit D level was like-- 10 or close to it, very low.

I have to wonder about "after the baby was born" things started happening. Either this may be damage to nerves in the spine from an epidural? strain on the leg nerves from delivery?
or an autoimmune flare of some type after delivery?

Nothing in the hands? Metabolic problems would show up in both hands and feet. My thyroid issues were severe in my hands during pregnancy.

Pregnancy takes alot out of the mother. EFAs the baby uses to form its brain, come from Mom. Then Mom can be low in these essential oils our bodies use to keep the nerves running well.
Fish oil, Flax oil, and evening primrose can help. If you are having very dry skin after delivery that might be a sign too.
Our American diet is often very low in these. But now we have "smart foods"..
Omega -3 eggs
Smart Balance peanut butter and spreads
Omega-3 mayos now
Flax in some cereals, etc.

You can try to use these to help as well. There are some Omega-3 enriched prenatals out there. Did you use one of those? This one is over the counter:
Expecta
http://www.enfamil.com/app/iwp/enf10...1&r=3462860705
and
http://www.mayoclinic.com/health/pre...tamins/PR00160

See what the rheumy says. There are other tests for inflammation, like c-reactive protein, ESR which are blood tests.
I've had elevated ESR in the 25 range for many years, but negative on ANA and RA panels. It remains a mystery for me.
I do have osteoarthritis tho, and some seasonal allergies, and that might be a factor, for those tests. Were you tested for heavy metals?
Arsenic in water or pressure treated wood exposure or ant killers can be a culprit. Spraying pesticides on the garden?

In the meantime, good conservative shoes, and a visit to a podiatrist to see if there is some mechanical problem in the feet, compressing nerves, etc might be a good idea.

PN is like a detective story... may take some time to find the cause. Remember some antibiotics you may have used in the past, also cause it. (Cipro, Flagyl, Levaquin, Avelox).

Thanks for the reply. I am going to try and answer all your questions :D

My actual issues started before my babies were born I just didnt know until after the fact. I did have an epidural for both deliveries as the back labor was aweful. I tried so hard to do it naturally. I had originally thought that was part of the problem but my hands/arm and my upper back are effected as well. Just the worse part of it is my lower back, hips, knees, and feet.

I had complained about feet and knee problems about 10 years ago for the first time. X-rays were taken told me there was nothing wrong and I was sent on my way.

As for the dry skin I have been fighting that since I was a teenager.

I am 37 and had my first baby at 36. My first pregnancy occured when I was 20. Between age 20 and 36 I had 9 miscarriages all before 10 weeks of gestation. With my first daugter I was diagnosist with gestionational diabetes but it went away when she was born. I did not have it with my second daughter.

I did take prenatals during pregnancy (and before) along with 4 mg of folic acid on top of that. I still take the prenatal vitamins....its from a natural food store.

My CRP is elevated and that is why he ran the tests for lupus and RA but like I said both of those came back negative and thats why hes sending me to the specialist. I asked him about the vitamin D test and he said the Rheumatologist would run that test as well as some more. He said there would probably be alot of testing when I see him.

On the referal it says "Elevated c-reactive protein (CRP)...note to provider: ANA Pos. Hirsutism. Diffuse Pain"

As for shoes I always wear tennis shoes with an extra support pad. Have done this for years as well. I will see if I can get the referal from my dr for the podiatrist.

I dont have a garden so I havent sprayed insecticide but I live in an apartment in AZ and they have orkin come in every other month and spray. They said its safe to be around but now I am wondering?

The morphine will probably change once I stop breastfeeding. There are only a few things I can take. My daughter was exclusive breastfeeding so not only do I have to change her to formula but I have to teach her how to take a bottle. She is doing ok but she does not always want the bottle so I am glad that I have 6 weeks before the NP meds start.

Thanks again for all your help.

Quote:

Originally Posted by GypsyQueen (Post 698423)

I know it has already been suggested, but I would also ask that you check your Vitamin D levels. My B12 was not low until months into the neuropathy.

However, my Vitamin D was at less than 4 (when the standards for "normal" are 30-100) for 8 months before we finally got it up.

I had posted this on another thread... something to think about. AS is an autoimmune disease that does not show on the current rheumatological antibody tests. I have AI symptoms but do not show titers for AI tests. My elevations are sed. rate, CRP and immunoglobulins. It is not so common, especially in females but it does occur. Usually the spine is not fused together in the female variant. I also agree in with Mrs.D and Sarah Mae in that Vit. D should be tested. It is fairly common to have a low blood level. Mine is often low but my neuro or rheumy gives me supplements.

I know you can send a link to a post in another thread, but I cannot figure out how to do it... so here is a copy of the post. Hope to be of help,

Mere

Quote:

Originally Posted by Mere (Post 698634)

Pain in the lower back with buttock pain and pain going into the thigh and side of the leg can be inflammation of the sacroiliac joints. I have been diagnosed with (female) ankylosing spondylitis. It is an autoimmune disease usually affecting males but can also occur 1:4 in females. I have bone pain in my SI joints - not in the joint space but in the bone. It is imflammatory and also causes pain in my tendons (tenosynovitis), arthritis in my hands, neck, ribs and other joints. I also have peripheral and autonomic neuropathy and fibromyalgia. I don't know if the neurological problem is connected to the rheumatic problem. I tend to think they are related somehow...

AS in women is very hard to diagnose. It does not usually show in an x-ray and does not show in blood (seronegative) except for perhaps a sed rate... an MRI with contrast does show destroyed bone though. I do have a very good rheumy whom I have been seeing for about 8 years. It did take time to get a diagnosis.

Hope you feel better and that perhaps this may help.

Mere

P.S. I forgot to mention... if it is the SI joint involved, a rheumy will know based on palpation. There is very specific pain in a very precise location in the joint that makes you jump off the table that can be distinguished from spinal and hip pain. I thought only my left side was affected but with palpation, both sides are now known to be painful and damaged.

And, given the cluster of symptoms described--

--multilevel hormonal imbalance, such as is found in polycystic ovary syndrome (PCOS), should be considered and investigated:

http://www.mayoclinic.com/health/pol...ndrome/DS00423

http://emedicine.medscape.com/article/256806-overview

I think an endocrine specialist may shed light on this...also your ANA is +, just because the tests for lupus etc. are negative, it does not mean this is not autoimmune. You have had a lot of miscarriages....this happens sometimes with AI disease.

How high is the ANA? What is the pattern? Are all your children girls?

I am learning so much from everyone here. Thank you so much!!!

First yes both my children are girls.

I do not know the number of the ANA it just says its possitive on the referal.

I was talking to my husband this morning and we did have a ultrasound that the tech said I had alot of cysts on my ovaries but nothing more than that was done so maybe this could be part of the problem as well. Next time I see my primary I will have him give me a referal to the endocrine specialist. This makes alot of sense to me as some of the symptoms I have. I started my mensus at age 10 and it was once every 6 months. My parents took me to the dr and he said that it was normal because I was not sexually active. When I was 19 it "regulated" to every 45 - 65 days. I never had the normal symptoms. No cramps, bloating, etc. I do also have "extra" hair growth.

Between my 8 and 9th miscarriage I was told all the tests were run and "nothing medically was wrong" except methylenetetrahydrofolate reductase which was treated with the extra folic acid. When I got pregnant for the 10th time I had accupuncture done and she had me take some chinese herbs. I do not know what the name of it is :confused:

I would pursue endocrine referral. Some endocrine disorders link with AI disease. There are a number of possibilities. ANA varies, as does the ENA, which is composed of the subtests for Lupus, RA, Sjogren's etc. Those tests can be repeated off and on to look for change.

Graft-host disease is possible since you lost so many pregnancies, and that can be more pronounced with a male offspring. It's unusual. IVIG is sometimes used to prevent pregnancy loss.

I am glad you have two lovely little girls!

Mere...your medical history is similar to mine. I have had the sacroilliac thing too.....20 years ago!