[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!