Quote:
Originally Posted by axseptants
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.
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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:
