Slowly Progressive Neuropathy?
 

Hi there. I'm new here but I've been reading a lot of previous threads. I don't know where I should post since I have neuro symptoms but I don't have a dx. One neurologist said I have neuropathy so I'll begin here.

History: I'm a young mom with 4 small children. No previous health issues except c-sections. 7 months ago I started having a buzzing in the bottom of my left foot. Moved to both but worse in left. Intermittent at the time but now it's constant. A month after that I woke up with my upper legs, lower arms, backs of hands and cheeks with a mild burning/itching. I dismissed it for a few weeks until I realized that it bothered me to wear some clothes. Right toes go cold every few minutes for the last few months. Muscles twitching in various places and a jittery/shaking muscle movements are the only visible symptoms. This summer I noticed a decrease in sensation in most places on my face, arms and legs. Light touch only. But i register cold and warm still. Just last week I get rain drop feelings all over my body.

I started having headaches a year ago after never getting them so I had an MRI. Looked good. Then they did another for vascular. Looked good. Blood tests all came back normal. CBC, vit.D, ANA, B12, TSH, celiac disease...

I was referred to a neurologist in another city and he did ANOTHER MRI and found nothing on my spine but a spot on my brain. He said I might have the beginning of MS. But also said my spot was not causing my symptoms! The neuroradiologist said the spot could have been picked up by stronger magnets in the last MRI machine. So maybe it was there all along.

I saw a naturopathic doctor convinced that someone is missing something. She sent away for an expensive nutritional panel. It came back that I was low b12, selenium and fructose sensitive. All of my doctors are dismissing this nutritional panel. Saying that some labs are not legitimate or that previous tests said I was fine.

My mom has hypothyroidism and got it after her 4th baby. I thought that was what I was going to have. I don't know what to do now. My neuro that found the spot said I could have a lumbar puncture. Should I do this to rule out more things? Also, I have developed high anxiety over all of this medical stuff, although I've always been a worrier. One doctor told me this was all caused by anxiety. Extremely hard to believe but I'm not the doctor. Does that mean this is harmless or still damaging? My nervous system feels inflamed. I feel like it has been stuck in fight or flight mode for months, even when I am having fun (which might be the shaky muscles). I don't know where to go from here. I'm so down right now. Any suggestions or advise would be so great. Thanks for taking the time.

Regards,
Annie

Neurontin 100mg 2x/day for burning sensation
Doxycycline hyclate 100mg 1/day for skin rash

No meds previous to this to cause problems.

Welcome to NeuroTalk:

I have a suggestion for you. Please get your numbers for the B12 and Vit D test. Many labs in US still report very low numbers as "normal". In fact you may NOT be normal at all!
Your B12 should be 400-500 or above to be normal these days!


New mothers with several small children in a row, often become depleted in EFAs... these are the good Omega-3s --good fats, your body converts to DHA for the growing brain of the fetus. If you did not have the new prenatals with Omega-3 added, or you do not consume flax products, you could be low in these. When that happens, your nervous system suffers, because your babies took your DHA and EPA from you to grow.
There is an OTC supplement made for pregnant women and those nursing etc...called Expecta.

Fructose sensitivity is common. 1 in 3 people have this. Just avoid all fructose. If you have GI issues, you might want to try Kefir... this liquid form of yogurt has TWELVE cultures in it, when yogurts typically have 3-6. I've just discovered this for myself and am very pleased, after having 2 gall bladder type attacks which seem now to be a dysbiosis of the GI tract! Lifeway is the brand I am currently using. It seems I have a new GI tract now! LOL anyone on doxycycline should be on a very good probiotic, and Kefir, is better than most you can find today.

This is my EFA thread (essential fatty acids/fats)
http://neurotalk.psychcentral.com/showthread.php?t=6092

Other critical nutrients for you would be magnesium, and a good Bcomplex for starters.

I think you will find traditional MDs lacking in sensitivity and compassion when it comes to new onset PN. Think back also and see if you have used Cipro, or Levaquin or Avelox lately.
These drugs cause PN in some patients...which is common knowledge now. But your doctor won't admit it... either.

Thank you for your reply. When you mention how taxing babies are to our bodies nutrients it really made me think back. I was nursing and so busy with all 4 kids that I wasn't taking good care of myself when this all hit. I was mostly eating off of their plates and in a pretty stressful state. I wonder how low my body was of nutrients. I'm very small to begin with. Depletion might not take as long. You would think more would show up on my nutritional panel. But by that time I had been on a multivitamin. I don't know if that alters the results.

I was given b12 hydroxocobalamin drops 2000mcg/day. But, the report from spectra cell labs recommended methyl b12. I was also low on vit E. I forgot that too. I will get the b12 and vit D numbers from my tests to see where I was and post those.

Cipro 3 years prior to symptoms. I was on it after c-section with baby #3.

Should I get tested for Lyme? I haven't been. I've read somewhere that I should get it from igenex lab. What do you think? Thank you for your input. I desperately want to heal these nerves or at least stop the new symptoms that come every couple months.

Much appreciated,
Annie

Yes, daily use of methyl B12 is good. But your drops are good too, better than cyano form which is synthetic. Just make sure you use them on an empty stomach...since your saliva will have the B12 in it and you will swallow it. B12 is absorbed passively in the intestine, but it should be free of food for best results.

Cipro and its cousins can cause PN.
Here is a link to read about it:
http://neurotalk.psychcentral.com/post661103-2.html
The net is filled with people today who claim to have various types of nerve damage from these drugs. There is even a book written about it called "Bitter Pills".

Doctors typically won't admit to it however. Dr. Cohen, who I've linked to on that thread is one of the rare ones, who thinks these drugs are overused in many cases.

With your muscle twitching etc, I'd find a good chelated magnesium product (not Oxide form) ---70% of Americans are low in magnesium. Your naturopath may have a good one to offer. Not eating whole foods, etc typically leads to low magnesium. Proper metabolism of Omega-3 fats requires magnesium too. I'd also do a Bcomplex 50mg in the morning, as well.

This is my B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

Any retesting now, for B12 may show you results you obtained so far with your supplements. So try and get that beginning reading to see where you were before starting your drops.

Getting low in essential fatty acids is common in women who bear children. One of the first signs is skin dryness and other issues with the skin. There are many "smart" foods now with flax added...cereals, Omega-3 eggs, peanut butter, mayo, even gummie vitamins for kids and adults! We buy chicken nuggets from Canada at Costco made with Omega-3's now !

It couldn't hurt to start taking some EFA supplements. Flax oil, for starters. If you are still nursing you should avoid fish oils, but there is the OTC DHA made especially for pregnant and nursing mothers, called Expecta, which is vegetarian derived, and safer. There are even EPA and DHA vegetarian oils but their EPA portion is lower than fish oils. EPA is the anti-inflammatory part of fish oil.

I'd also look carefully at your thyroid. Some women become hypo after delivery. Selenium is a cofactor along with zinc in conversion of T4 to active T3 in the tissues. Do the nutritional support for about 6months, and if you continue to decline, exploring Lyme can't hurt. And yes, Igenex is the one to use, since other labs have false negatives more often.

All the nutritional advice is good--
 

--but, still, given that spot on the MRI, you may want to get that lumbar puncture to gain more evidence, or rule out, the possiblity of MS or other central nervous system demyelinating disease.

There are many things which can cause spots to show up on MRI, B12 deficiency and migraines among them, but the widespread presentation you describe is more common among those with central nervous system issues than it is with peripheral neuropathy. This is not to say that one cannot have an acute onset body wide neuropathy that is peripheral in nature--in fact, one reason to get the lumbar puncture is to also look for signs of acute onset Guillain Barre syndrome (a demyelinating peripheral nueorpathy) or sub-acute onset chronic deyelinating inflammatory polyneuroapthy (CIDP). I would think some more extensive testing, including some nerve conduction or possibly evoked potential tests--to try to isolate the SOURCE of the symptoms (central or peripheral) is in order.

Thank you-
 

Mrs. D-
Thank you for the great info on supplements.
I'm taking:
2000mcg of vit b12
2000mg of omega-3 (wild Alaskan salmon)
Magnesium citrate 400mg
Vit D 1000 IU
Vit E 800 IU
Probiotic (primadophilus optima 14 strain)

I'm not nursing anymore. You suggest a b complex and flax oil as well. Anything else?

I have wondered many time about my thyroid. They've checked 5 times saying it's normal. But I have an intolerance to cold and i'm very drained.

My right thigh started vibrating or buzzing yesterday. It feels like the wiring in my body is shorting out. The tiny zaps all over are so unnerving. No pun intended.

Glenntaj-
I think I will go ahead with the lumbar puncture. I will ask about a NCS and evoked potentials. I feel like this is a body wide attack on my nervous system. It is so many places, although not in my torso. Also, my ANA and sed rate were normal.

Thank you for the help!
Annie

I developed the thigh thing, which may be Meralgia Paresthetica.
Mine came slowly, following a C-section, that had some exploratory work looking for a hormone secreting tumor (which was negative).

Heat will activate this problem, I found. Mine progressed from tingling and feeling of cold running down my leg to frank stabbing pain. I finally used Lidoderm patches for it, when they came out, and obtained a remission. But overextension of the leg, heat, or tight clothing will give me some reminders of the old days!

MP is irritation of the lateral femoral cutaneous nerve. The muscle is not affected. This is our forum here, but it is not very active:
http://neurotalk.psychcentral.com/forum76.html
You can look around, for my posts there. I have many links as well, to read.

If your thyroid results are using the old scale 0-5.0... you may be hypo, with a reading above 3.
The new scale is .1-3.0 but not all doctors are using it yet.
This is a battle however... so you may not get very far unless you go to a doctor who does physiological hormone replacement. Not common everywhere yet.

Instead of a probiotic you may want to try Kefir...this is a liquid yogurt which I just had a remarkable positive response to.
It has TWELVE organisms in it in high concentration, and is very very nice to reestablish your digestive functions.
I got mine at Kroger's in the health food aisle. But most health food stores should carry it too. A friend on these boards suggested it to me, and I have to say it was rather miraculous how it improved my longstanding GI problems.

Here is the most common producer of it:
http://www.lifeway.net/
I have to use the unflavored one (lower sugar), and it is a bit sour, with a bite, but after a few days, I don't notice it anymore. You may be able to use a flavored one, which is just like a smoothie..and more fun.
I use about 4 ounces a day. No more cramps, no burping or hiccups any more and my GI pains and IBS problems are GONE.

Your supplement list looks pretty good ... But with no Vit D test to go by, the dose of the D3 may need adjusting.

I agree with Glenn
 

that the spot need to be taken seriously. The twitching may turn out to be benign, buy fasiculations as they are called, are judged by the company they keep, and a spot on the brain is bad company. You probably should see a neuromuscular specialist.

So my understanding is that MS is more than one lesion. I have 1 lesion that is 3 mm. Can anyone tell me what else this could be? I've heard migraines, low b12, but what other neurological conditions could this be tied to?

Thanks!

Some lesions come from contaminated food ... certain parasites, can enter the brain. There is a specific worm called the pork tapeworm that enters the brain. Lyme disease is also a parasite. Some viruses like Herpes, zoster (chicken pox and shingles), low B12.

Here is a medical Mayo article about it:
http://www.mayoclinic.com/health/brain-lesions/MY00847

After reading the MS forum for a long time I've seen posts where people have follow up MRIs and some lesions go away.