Hi all - I'm happy to be here among similarly situated individuals. I am a huge question mark to the medical community. I'm sure some of you find yourself in the same situation. I started having autoimmune symptoms and peripheral neuropathy 16 years ago (I was 23 then, now I'm 39). Things have progressively gotten worse with very few answers and no clear diagnosis. Some of my symptoms closely resemble Sjogren's Syndrome, but I do not meet the strict criteria for the disease and all of my bloodwork is normal. I had a thorough neuro workup about 12 years ago that was inconclusive. I am again on the neuro route since I haven't had any studies done in over decade and my neuro symptoms are worse. Also, I went to National Institutes of Health last summer to their Sjogren's clinic. I didn't meet their strict criteria but they suspect autonomic nervous system dysfunction. I now know about small fiber neuropathy and that it can really only be diagnosed by a nerve fiber density test and not through MRI scans (correct?). I have not yet had the nerve fiber density test, but plan to do so. The neurologists I saw 12 years ago never mentioned Small Fiber Neuropathy. Amazing what docs DO NOT know.

My symptoms are as follows:

- Bilateral Peripheral Neuropathy (both feet and legs up to the buttocks)
- Sicca Syndrome (dry mouth, eyes, vaginal dryness)
- Inability to maintain normal weight (skinny no matter how much I eat. 10 years ago I was a size 8 or 10; now I'm a size 2)
- Vulvar skin condition that no one can figure out. Two biopsies negative for Lichen Sclerosis. This has been going on for 8 years. Incredibly painful with skin becoming continually broken down.
- Cognitive problems (short term memory and word finding problems)
- fine motor skill issues (my handwriting has become increasingly illegible)
- Interstitial Cystitis of the bladder
- Chronic yeast issues
- Weird fingernail and toenail issues (pitting, ridging, thickening)
- gastro motility issues that come and go
- mild tremor and fasciculations
- HSV 2 (Herpes) on my cervix
- Of course, I also have depression and anxiety issues (how could i not??).

I am negative for Celiac disease and negative for Diabetes. I'm sure I am forgetting some other symptoms (there are so many).

I work full time (amazingly) in a management position. I am single and own my own home so I have no choice but to work so I can pay for shelter, food, and clothing. I am very thankful for still being able to work, but I fear a day will come when I cannot.

I grew up on a farm where pesticides, herbicides and fungicides were used. I have always suspected that may have had something to do with my illness since I was conceived and born there. My mom drank the water when she was pregnant with me and my baby formula was mixed with it.

My health issues have ruined romantic relationships. I attribute the fact that I am single to these health issues (people I meet just can't deal; especially since I have herpes as well).

Ten years ago, I wouldn't have been as forthcoming about all my problems publicly, but I am so desperate to get some answers I would post them on a billboard if I could get answers and relief.

Thank you for this site.

Hello, I'm new here, as well. Some of the symptoms you list I have, or can identify with. It's hard to have a bunch of whacky symptoms. Sometimes I feel that I'm really just imagining them, or being a hypochondriac. I have PN, too, with hx of alcoholism along with a history of L4-L5 lumbar laminectomy.

The PN for me also seems to be progressive. I have been told that the PN is due to alcoholism: would go away/ get better/ not get worse if I didn't drink/ or would progress. Pick one! Also, not caused by the etoh, but nutritional deficiencies, due to alcoholism. Or not?!. Or both?

I have known for a longtime about B vits. and the right kind to take, but haven't really buckled down and made a commitment to it. I guess I'm ready. Nutrition may be all that I can control, outside of a lot of meds! MrsD has a lot of answers, I know, so I'm going to read her posts as well as anyone else offering help. Someone else posted to try things one at a time, so I can properly evaluate them. My PC nurse is very strong on supplements, too, so no worries there.

This is a wonderful place, full of kind, supportive people. I am still more than a little overwhelmed by all the information here. Do you feel that way, too? As I have seen so many people post, you are in the right place!: Wave-Hello:

Hi,

I'm rather new here as well (a couple months), but not new to medical problems.

I have Sjogren's and can tell you that at least 40% of patients are sero-negative for blood markers. I am sero-negative, but my diagnosis was confirmed by lip biopsy and schirmer's (which with other symptoms fulfills the criteria). Have you had either of these tests?

I also have PN and severe autonomic neuropathy, so I'm quite familiar with your symtpoms. There are many tests to help diagnose autonomic dysfunction. Have you had any? What about a skin biopsy for diagnosis of small fiber neuropathy?

Actually Sjogren's can cause both the PN and AN. I don't know how extensive your diagnostic journey has been to date, but you may want to consider a second opinion on the Sjogren's. There are many things that cause sicca but the lip biopsy can tell if it is REALLY sjogren's or not.

Welcome to the board.

Hi there - Thanks for your message. I have had an extensive work up for Sjogren's. I first was diagnosed with it by a doc at Harvard Medical Center in 2002 based on signs and symptoms. I had failed the Schirmer's test, but all other tests were normal. Just this past summer, I went to the Sjogren's Syndrome Center at National Institutes of Health in Bethesda, MD. They did a lip biopsy, which showed inflammation, but not the exact markers for sjogren's as I understand it. They also did a saliva test (both provoked and unprovoked). I was able to make saliva when provoked. I also had an eye exam. I produced plenty of tears on the Schirmer's test so I didn't meet the eye criteria.

They have a strict criteria (I think it is called the American European Protocol??) for diagnosing Sjogren's and I did not meet the criteria. You are right that you can be seronegative and still meet the criteria. I am seronegative, but I also failed to meet the other criteria so they said that, for now, they cannot diagnose me with Sjogren's. They said that doesn't mean I won't meet the criteria later. I just don't now. They said there is a correlation between Sjogren's and Autonomic Nervous System dysfunction, but they just don't understand it completely yet.

I have not yet had a skin biopsy/muscle biopsy for the neuropathy, but I plan to pursue that next. I have found a neurologist willing to do it, but he wants to do some MRI scans first. I think he should just go straight to the skin biopsy. I don't think the MRIs are going to show anything. They didn't 13 years ago when I first had the neuro work up.

I'm curious. What type of doctor did your skin biopsy? Was it a surgeon or another specialty? As I understand it, they do a punch biopsy, but how deep is it? I want someone who is experienced in this to do it.

Also, I have read about some tests they do for autonomic nervous system, but I don't know all of them. Can you enlighten me on this? I don't know my way around this site very well yet so any help you can give is appreciated.

Thank you again for replying to my post.

--to determine intraepidermal small-fiber nerve density and condition is a very quick and non-invasive procedure--small amounts of local anesthetic are injected at the sites and then a small circle of skin, about 3mm in diameter and 1 mm in thickness, are excised. The whole procedure takes only a few minutes; samples are usually taken from the calf near the ankle, from the proximal thigh, and often from the arm near the elbow, to check if there is a distal to proximal gradient or "die back" (nerves in lower density or worse condition farther away from the center of the body). A few band-aids and one is done.

These samples are then sent to specialty labs at which special stains are used to bring out the nerves and then they are examined by electron microscopy. Not many places do this--Johns Hopkins, Jack Miller in Chicago, Cornell-Weill/Columbia Presbyterian, Massachusetts General are among the more well-known that have the facilities, and the trained pathologists, to do so.

As for the Sjogren's. If you don't have positive blood work, then a positive biopsy is a must. There are set guidelines for the grading of lip biopsies. The Greenburg Scale is the one used by Hopkins and I also believe NIH. You can have inflammation present, but in order to meet the criteria, you must have at least one focus (focus = an aggregate of 50 or more lymphocytes with 4 mm sq). Therefore, you likely had infiltration of lymphocytes, but not a complete focus. But like you said, that change change later.

The neurologist at Hopkins did my skin biopsy, but I understand dermatologist have been trained to do them as well. However, they must be sent to one of the few places capable of reading them...like Glenntaj said.


Autonomic testing can include:

gastric empty study for delayed stomach emptying (eating some scrambled eggs with contrast and laying still while pictures tracking movement are taken for 2 hours)

Tilt table for diagnosis of POTS (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotension).

cardiac holter monitor and/or event recorder to confirm heart rate/rhythm dysfunction

QSART (sweat test)

You have a vast array of symptoms which could be autoimmune. I would go ahead with the MRI"s just to be sure to rule out structural problems that may not have been present years ago. There is a new MRI to look at the dorsal root ganglia. Ganglionitis has been connected to Sjogren's. However, this new protocol is likely not available in many places...mine was done at Hopkins.

Diagnosis can take a long time. Sounds like they have looking for quite some time already. Hopefully the MRI's or skin biopsy will hold answers for you.

Thank you so much. Also, today, I got some interesting news. I received results of an EMG in my legs I had in March. I haven't talked to the doctor yet, but I picked up the results.

Here's the narrative:
Summary: The nerve conduction study of the above nerves showed prolonged DML right peroneal nerve, decreased amplitude right peroneal at the fibular head, decreased conduction velocity right tibial. The monopolar needle EMG revealed increased in spontaneous activity and positive wave vastus lateralis.

Impression: This is an abnormal study. There is electromyographic evidence of sensory and motor polyneuropathy and possible myopathy. Etiology is yet to be determined. Clinical correlation is required.

I had given up on neurologists over a decade ago when all my test results came back normal. I just started going down the neuro route again recently. 16 years since my symptoms started and I finally get an EMG that shows something. I guess I should still have the skin biopsy too to determine the small fiber nerve aspect of the damage??

Thank you again.

Thank you for the info, especially on the autonomic nervous system testing. The only tests I've had of these so far is the gastric empty studies. I've had two and both have come back normal. The most recent one was a few months ago.

Thanks again.

the neg test for Celiac is not the end of that, i am afraid. There is ~ 20% false negative n the blood work, and that is if it has been completely done!
And it could be that you hadn't progressed far enough in the disease process that you didn't test positive. The only real "test" for celiac/gluten sensitivity is the an absolute gluten free diet for a fairly extended period of time, 6 months or so for neuro symptoms. Good luck

Axseptants,

Although not glad your EMG showed problems, at least you have a few answers and a direction to head now.