[wmahla]

I am new to this forum and would like to ask for some advice. I have been suffering from mainly sensory neuropathy symptoms since the beginning of the year. Multiple areas of my body are affected; feet and lower legs, hands (sometimes progressing up my arms) and my sides of my head radiating across my forehead. I had a very rough stretch in March and April, which seemed to abate to a certain extent. Again over the summer months things seemed to have worsened. I have seen many, many doctors (including three different neurologists); I have had many blood tests. I have had a full head and spine MRI. I have had a full GI examination, including an endoscopy, a small capsule endoscopy, and a colonoscopy.

The long and the short of it is that other than a few abnormalities in my blood tests (slightly high ferritin and low iron numbers – though I an not anemic), I had a slightly positive ANA antibody test (1:160 with a nuclear pattern).

I have had three EMG studies of my legs. The first in January: “This EMG/NCV study shows evidence of a mild demyelinating polyneuropathy affecting the motor nerves. There is no evidence of radiculopathy.

I went to a second neurologist at the University of Massachusetts Neurology Clinic in April. I had a second EMG/NCV study with a different conclusion: “Normal EMG of the right lower extremity. No diagnostic evidence of right-sided radiculopathy or mononeuropathy.”

I went to a third neurologist at the Brigham and Women’s Hospital in Boston, the assistant department head and head of the Neurology Clinic. They repeated the EMG. I don’t have the report, but was told that the study was essentially normal with perhaps a few minor motor abnormalities that the doctor did not consider significant. The diagnosis I was given by this doctor was Small Fiber Polyneuropathy.

Though I would agree that my symptoms are mainly sensory, I do feel that my fingers, wrists, and ankles are becoming increasingly stiff and weak. The stiffness feeling is real, the weakness may be more of a feeling than an actual weakness at least at this point.

I have been on thyroid medication for autoimmune thyroid disease for years. My PCP feels that my thyroid is under control. She mainly looks at TSH. I had another doctor run a more complete set of thyroid tests on me, and these numbers indicate a high level of RT3 (Reverse T3) and a Free T3 to Reverse T3 ratio of 20. I have posted my thyroid numbers on several boards that discuss these things and have been advised I am functionally hypothyroid. Because of the lack of knowledgable doctors, they advise self-treatment programs. These are not possible in Massachusetts because I can not order blood tests on my own in this state. I do not know how to find a doctor to pursue alternative thyroid treatments (I take synthroid 125 mcg (T4) daily and 10mcg of T3 daily).

I did a house project in mid-to-late December that involved ripping up a tile floor. I spent days jack hammering the floor and it was very stressful. I believe that potentially this project triggered all of this, but of course that is highly speculative on my part.

At its worst, the burning / stabbing / tingling / electric shock feelings / twitches I experience are very difficult to bear. I am very anxious about all of this and have been prescribed anti anxiety medication, which I have taken for months.

Recently, I have started taking some narcotic pain medication that provides me some relief. I took gabapentin – I don’t think this medicine did much for me. I have recently been switched to Lyrica. I have no opinion on it, as I am currently on a low dose (50 mg twice a day).

I have been sleep deprived for months and none of the sleep meds seem to help me that much. I recently tried Lunesta after building a tolerance to Ambien. I can not take SSRIs or SNRIs. I react badly to them. If I can manage a good nights sleep, the next day is definitely better with regard to my neuropathy symptoms.

I am on the following supplements (some of which I have gleaned from this forum) and medications:

• Fish Oil – 3 twice a day (Ultimate Omega Fish Oil – Pharmaceutical grade) and Krill Oil – 2000mg a day
• Saw Palmetto (Serenoa repens) (fruit) 450 mg – twice daily
• R Alpha Lipoic Acid 300mg once daily
• PreserVision Eye Vitamin and Mineral Support – 2 twice daily (Contains Vitamin A as beta-carotene 14320 IU, Vitamin C as ascorbic acid 226mg, Vitamin E (dl-alpha tocopheryl acetate 200IU, Zinc as zinc oxide 34.8 mg, Copper as cupric oxide 0.8mg)
• Pro bio max DF – once daily
• Insolitol – ½ teaspoon 3-4 times / day
• Acetyl L-Carnitine – 500mg twice a day
• Ubiquinol (CoQ10) – 100mg twice a day
• N-Acetyl-L-Cyseteine – 600mg once daily
• Methylcobalamin (Methyl B12) – 5000mg once daily sublingual
• Mega Benfotiamine (Thiamine B1 as thiamine HCl 10mg and Benfotiamine 250mg) – twice daily

Medications:

• Synthroid 125mcg – 1 early morning – maintenance dose for several years
• Liothyronine 5mcg – 2-3 early morning
• Hydrocodone-Acetaminophen 10-325 – three times a day
• Alprazolam XR 0.5 mg in the morning, 0.5 mg Alprazolam morning, 0.5 mg Alprazolam late-afternoon, Alprazolam 0.5mg at bedtime
• Lyrica 50 mg 2 times daily
• Lunesta 3 mg – 1 one hour before bedtime
• 81 mg aspirin – 1 at dinner
• Lanaprost drops for glaucoma – 1 drop each eye at bedtime
• Colace (Docusate Sodium) – twice daily

I am eager for any advice the members of this forum may have for me. Thanks in advance and sorry for the long post!

[Ed A]

Well, there are many people on here that know a boat load more than I. mrsD (http://neurotalk.psychcentral.com/member.php?u=72) is a moderator on here and is a very good person when it comes to the meds. She will more than likely chime in and try to help out. I hope that you find some relief!!!

[Ed A]

OH... and by the way, Welcome to the board!!

[mrsD]

Welcome to NeuroTalk...

I see you are taking alot of supplements, but one very important one is lacking.... magnesium.

You may find it helps you sleep better. Also helps with the metabolism of the EFAs, formation of serotonin and hence melatonin, and helps with pain control by suppressing the NMDA pain receptor activity.

Oral forms have to be chosen carefully... a good chelate form
and not the OXIDE which is found in many common supplements.

Here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Some of us are finding a topical lotion available from CVS now very useful. You apply it anywhere on the body, or directly over problematic muscles or tightness.

http://www.cvs.com/CVSApp/catalog/sh...new_crumb=true
The price varies due to sales online, but the lotion is in the stores too for 9.99. It is really very good. It relaxes you as well and may help with sleep if you apply it at bedtime.

[wmahla]

Thank you, Mrs. D. I was taking Magnesium Taurate (400mg) daily using 4 pills - one with breakfast, one with lunch, and 2 at bedtime. I was noticing some issues with loose bowels, so I stopped. Now that I am on the narcotic pain meds and am experiencing some constipation, perhaps I should start taking it again. I still have quite a bit of it left. How do you feel about Magnesium Taurate? Should I start taking this again? What dose would you recommend?

I will try the CVS lotion. Anything to help with sleep would be wonderful for me.

Do you have any other recommendations for me with regard to medical direction? I am really at a loss as to what to do next. I am very frustrated with the labeling of my disease as idiopathic. There must be cause and I think the doctors just have time to check for the obvious.

Thank you!

Walt

[mrsD]

I think you can start at 1/2 that dose you were taking.

See how that goes. You can take one in the morning and one later in the day to space them out.

The topical is really working very well for me and my husband (he used it for a back strain this summer).

Some of our PNers like it so far as well.

I think if the circulation is not working well over damaged areas, then topical may get in better than oral. The lotion is quickly absorbed over the arms...I often use it there on the under sides of the arms where the skin is thinnest, before bedtime. I use a dime sized area on each arm.

You can also soak in epsom salts in a bath. Use warm water (not hot) and do at least 6-8oz in a bathtub of water. Or 2oz or so in a small tub if only soaking the feet.

I think long term use of Xanax may be counterproductive. While it may help in the short term, in the long term it is rather habit forming, requiring higher and higher doses. During the wear off periods, your symptoms may return with higher discomfort. Getting off this would be very difficult I think however for you.

I also wonder if you have had any heavy metal testing? Elevations in this can cause neuropathic symptoms. Also use in the past of Cipro, Levaquin or Avelox? Do you take statins for cholesterol?

I would also get your Vit D tested. And come back here with the results. The RX form does not work, but your doctor will offer it if you are testing low. The basic rule is 1000IU of D3 for every 10ng you need to raise.

[glenntaj]

--given that you do seem to have some autoimmune issues, there definitely needs to be other autoimmune testing, if you have not had it (Mass General is usually pretty good about this; it's more conversant in neuropathic syndromes than many others).

I'm not only speaking of the rheumatological testing, though many ANA related conditions can cause a sensory or sensorimotor neuropathy through various mechanisms, but testing for antibodies to nerve, as well. (When one has one autoimmune situation, there are likely to be other as well.)

This paper helps to delineate some of those tests:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

Also, did the GI testing include a good look for the flattened villi of celiac, an often overlooked cause of neuropathy?

[zorro1]

you may notice improved pain relief when lyrica is ramped up, 100mg is small. one fellow here takes 600mg

[wmahla]

Mrs. D,

I did get my Vitamin D levels tested recently. My Vitamin D2 was <4 mg/dl (I assume the lab could not detect any) and Vitamin D3 was 50 mg / dl. Should I supplement? If so, I assume I should take vitamin D3. How many IU would you suggest daily and for how long?

I did try the CVS Magnesium Lotion you suggested. I apply it twice a day. Mid afternoon, I apply it to my feet and hands and at bedtime I apply to my feet, my hands, and on the underside of my arms. It seems help my feet. I notice less cramping and improved nerve function. I seem to be able to spread my toes better than before. I plan to stick with it. Do you have any comments on how I am using it?

I also have restarted my Magnesium Taurate. I take 4 tablets a day (one at breakfast, one at dinner and two at bedtime) which is supposed to represent 400 mg of elemental magnesium. Is there a better magnesium supplement to take? If so, what do you suggest. How much should I take daily? Incidentally, my serum magnesium was recently tested at 2.3 mg/dl.

I have started a slow taper to try and wean off Alprazolam. My doctor suggested a reduction of 0.25 mg every two weeks. Thus it will take me six to eight weeks to get off of it, if I can.

Whether it is the PN pain or some other system issue, I am not able to sleep without the assistance of drugs, so I take Lunesta. I was wondering if you have any suggestions. How do other PN sufferers deal with sleep issues, which I assume are fairly common for us? I was reading in another thread that you and others like Theanine. Given all of the drugs I am on, is this an option for me?

Thank you so much for all the work you do on this forum and for your prior suggestions to me. I would appreciate your consideration of these additional questions.

Thank you!

[mrsD]

The D2 reading is not germain to much these days. So your other result is pretty good.

When using the topical magnesium liberally, you may not need the full dose of the oral. This would be very critical if your kidney functions are not normal. But the magnesium taurate is a good one because the taurine is also good for you.

It is your choice whether to use 1/2 dose of the mag oral or not.
I am glad you are seeing improvements with the lotion. Everyone here who has tried it likes it too. With time it may help correct some things and you won't need so much oral. If you stop the lotion you WILL need the oral however.

Melatonin is made in the brain from serotonin using methylB12..and you are taking a good dose of that.

Sleeping is difficult to address. I use l-theanine now at bedtime and it helps with GABA...and may help you taper off that Xanax more comfortably. I also take 3 mg of melatonin in a new combo product from Schiff called Melatonin Ultra (has some theanine in it too, but a small amount). I don't think the theanine would interact with other medications.
Here is a good resource and it says no interactions so far published:
http://www.drugs.com/npc/l-theanine.html
I think you could try it... it is supposed to help with PN too.

When I have major sleeping issues I use 50mg of Benadryl, but some males may not be able to use that because of prostate issues.(may cause urinary retention).

The magnesium should be helping with sleep too..esp if you apply one of your doses at night.

If your sleep problem is due to poor serotonin levels, consider l-tryptophan. It may help as well...but you cannot use it if you take any SSRIs or Cymbalta, or its cousins. As you decrease the Xanax you'll notice for a short time unpleasant side effects.
Theanine and tryptophan may help that.

Thanks for the update.