Condensed version. I have an undiagnosed autoimmune, believed to be the cause of my small fiber neuropathy. I have skin issues. I have been misdiagnosed (2002-05) and undiagnosed since 2002. I have posted photos of my skin to see if this looks familiar to anyone. Uninsured so have to be selective in going to the docs. I'm thinking MAYBE lupus, or sacoidosis...
The biggest complaint is the fatigue. Sometimes it hits and I feel like I have the flu, but no fevers, no cold like symptoms, just the body aches and weakness and lack of appetite. I have intermittent digestive problems, sometimes it doesn't work, other times, works too well. Yes, I itch. It comes and goes, usually lasts 3-4 days, then stops for a day or two - neck to ankles. I've ruled out contact allergies - use Dreft for all laundry that touches my skin, Basis soap in the shower, and ruled out chicken &/or egg allergies. Sometimes there is a rash, other times nothing while others I scratch so much I cause the rash. My hair has become thin, and I've lost some hair on my calves. Then there is the neuropathy. My feet tingle, my thigh muscles are weak, I get shooting pains up my forearms and thighs. Too much work with my hands causes a lot of neuro pain. I drop things and trip over things as well. Undiagnosed pain in upper right abdomen. Ruled out gallbladder, liver, and ulcer. Was told I have a small hiatal hernia, but that doesn't explain the pain. Xrays have ruled out other forms of joint degeneration in hands and hips. I also have an intolerance to cool & cold temps.
Neuro just ruled out HIV, Hepititis (hepatitis), Celiac's, RA, Diabetes, hypo/hyper thyroid & Hashimoto's. CTs just ruled out lymphoma, but have a newly discovered cyst on my liver. All labs are normal except for ANA, MPV and Monocyte counts.
I do have Morphea Scleroderma, developed a patch as a child and to my knowledge, morphea doesn't cause these problems. I have mild OA in lumbar region, only discovered in 2007 when I pulled some back muscles. Also have low BP my average is 96/68, but sometimes as low as 87/54. Just ruled out POTS and other orthostatic issues.
I hate to dx someone over the internet, but it really sounds a whole lot like what I have gone through with lupus. You said all your labs are normal except the ANA, MPV and Monocytes.
Did you mean MCV? If so, that means your hematocrit is off. It reflects the size of the red blood cells. Increased values may indicate macrocytic anemia or vit B or folic acid deficiency and decreased values may indicate microcytic anemia possibly caused by iron deficiency.
Monocytes are the cells that help fight severe infections. Elevated levels are seen in tissue breakdown, chronic infections, carcinomas, leukemia or lymphomas.
ANA can be found in low levels in lupus, cancer, leukemia. Mine started out low and just kept on jumping up higher and higher. Someone told me to spend time in the sun before my labs were drawn and if I had lupus it would make the ANA extremely high. They were right. I was having trouble getting a dx and help. lupus can cause some of the rashes that you are dealing with. They are called "Urticaria'. This is one of the few skin rashes in lupus that itch. It does have a connection to allergies. Another thing is called "Bullous Lupus". This is fluid filled blisters.
Here is a list of medical conditions that have simular symptoms. I hope this list is a help to you. LET ME KNOW WHAT YOU THINK.
Rocky Mountain Spotted Fever is another possiblity:
all of the above except no stiff neck, no erythema migrains, and no leukopenia.
(I ended up testing possitive to RMSF) I was a very sick puppy last year. Fibro, lupus and RMSF
fatigue, headache, short-term memory loss, muscle pain, difficulty concentrating, joint pain, depression, abdominal pain, lymph node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scratchiness in eyes, blurring of vision, double vision, sensitivity to bright lights, numbness or tingling in extremities, fainting spells, light headedness, dizziness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitations, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities or eyelids, burning on urination & hair loss.
reported to follow a # of infections like Epstein Barr, Mono, hep C, lyme, etc.
fatigue, hair falling out, sores in mouth and or nose, sores in head or even on your face and other parts of your body, joint pain (sometimes w/ swelling), Raynauds (in some), cold intollerance, occasional hot flashes, muscle aches, nausea, diarrehea, severe headaches, tachycardia, weakness, heavy feeling on chest, abdomen swells, elevated ANA, rash on face. (to name a few)
PLEASE NOTE THAT YOUR ANA CAN BE LOW OF EVEN NEGATIVE AND IT DOESN'T NECESSARILY MEAN YOU DON'T HAVE LUPUS. THE BEST WAY TO KNOW IS SPEND TIME IN THE SUN BEFORE THEY DO LAB TO CHECK YOUR ANA. IF YOU HAVE LUPUS, THE ANA WILL SPIKE UP, IF NOT IT WON'T AFFECT IT.
Another possiblity is Celiac Disease. This is a glutten intollerance and is sometimes associated with an autoimmune disease. Look up the symptoms to this as I'm not real familiar to this illness other than it can cause joint pain and diarrehea.
MPV is my Mean Platelet Value.
Here are my latest labs... One of these was for Celiac's - it was negative also. My B12 was over 700 - no deficiency there. It's a long list.
Cancer is one of the things I'm keeping an eye on. Just had CT scan of lymph nodes, just in case!
As to these, took out what I don't have...
headache, chills, fatigue, nausea,rash, cough, arthralgia
Rocky Mountain Spotted Fever is another possiblity: Researched. Doesn't seem like this
fatigue, headache, short-term memory loss, muscle pain, difficulty concentrating, joint pain, abdominal pain, lack of restful sleep, muscle weakness, balance disturbance, diarrhea, constipation, sensitivity to bright lights, numbness or tingling in extremities, light headedness, dizziness, clumsiness, sensation of fever, chills, night sweats, allergies, palpitations, & hair loss.
reported to follow a # of infections like Epstein Barr, Mono, hep C, lyme, etc. - have never had. I've never even had chicken pox - even when my children did...
Fibromyalgia: was tested, none of the pressure points hurt...
fatigue, hair falling out,, joint pain (sometimes w/ swelling), Raynauds (in some), cold intollerance, occasional hot flashes, muscle aches, nausea, diarrehea, severe headaches, weakness, elevated ANA, rash on face. (to name a few)
Your ANA is slightly elevated. I've never seen it written like that. All I'm familiar with is 1:40, 1:80, 1:160 (there is a pattern, the # doubles each time they wash the blood. If they still see the Nuclear pattern, they wash it again. It's how many Xs they wash it.) Anyway, they didn't seem to get a pattern to your ANA. I would certainly ask them to retest you (at least just the ANA and get a pattern) (AND SPEND TIME IN THE SUN FOR AT LEAST 1 HOUR BEFORE THE TEST - since you live in OH.)
Your cholesterol looks great. And the high HDL is great! That is the "heavenly" cholesterol that helps you live a long time and cleans you arteries out. "H" "heavenly" that is how I remember that the HDL is the "good" kind. OK, call me crazy!
OK back to your symptoms, you could possibly have CFIDs. Did they check for Mono? I have a friend who had Mono w/o very many symptoms. She just felt bad w/o the swelling of the glands.
The other thing I would not rule out is Lupus. And of corse you are keeping an eye on the cancer thing. Have they done a mammogram? Look up on the internet: Things that can cause the ANA to be elevated. I forget the list of things that can cause that. I know that if you have a family history of autoimmune disease. Fibromyagia, certain cancer.
Hang in there girl. Take care of yourself. TAKE YOUR VITAMINS. That's one thing that made such a difference in how I felt. I had been nauseous for so long that I had quit taking my vitamins. After almost dieing last winter, I decided I needed to start back on my vitamins and herbs. One that I would recommend for people with immune problems is "Cats Claw". It is a wonderful herb that boost the immune system. My nephew was healed of Nephritis with it and I had an infection that got in my blood stream (strecks going up and down my leg) and by the morning it was gone. We use it for colds. I was running fever everyday until I started on this herb. I suppose the lupus was what caused all of the nausea because I hardly ever have nausea since I've been on the Plaquenil.
Hi there. I read your posts and I didn't know Lupus presented with nausea. I have one doc that thinks I might have Lupus but 3 docs that don't agree with him. I still have no dx after 6 yrs of terrible suffering with numerous debilitating symptoms in all categories and systemically though out my body. Last year I had a rash on arms and legs that I originally thought nothing of but kept thinking back how my doc had talked about Lupus. He asked me if I had the rash on my face and I said no and he said hmmmm. So, investigating the subject I ran across vasculitis which they say can present with Lupus or by itself. This is the type rash I had according to photos on internet. I can't seem to get any of my docs to do anything for me though. My ANA has been extremely high 2 or 3 times they checked but then low on a couple other occasions. My sed rate was elevated by about 10 at one point last year but now is normal range. I have had the rash on arms and legs, have felt generally very ill several times in past year, have joint and muscle pain along with extreme tingling and feelings of constriction in arms legs and abdomen. Have chronic mucous drainage which I almost choke on every day. Have twitches throughout entire body and most recently have strange sensations through entire body and feel a strong pulse throughout my body along with racing heart beat and fluttering in heart. Just a very strong forceful pulse throughout my body at different times. Any ideas from anyone would be greatly appreciated. I guess I am interested to know if anyone on here has Vasculitis alone or with Lupus as well so that I can compare symptoms. I am scared. Thanks to everyone!!!
I've been going to the doctor for several years for ringing in my ears which is 25/7, burning skin pain without a rash, (feels like I have a bad sunburn but skin looks fine) neuropathy, intolerance to cold, very frequent cold sores which I take valtrex for, pain in fingers and toes like I've been out in the cold and motion sickness type feeling.
My bloodwork has been normal except MRI of brain shows signal abnormalities in marrow, very slightly elevated kappa/lambda ratio (3.05)
and sensory neuropathy per QSART test. I occasionally get very small rashes on my body (not face though) that itch and come and go. I am waiting for the neurologist to get back to me about his assessment-just found all this out this past week. I'll post here if I get something definative.
Lupus can cause nausea when it affects the digestive tract. Usually diarrehea accompanies the nausea. Lupus can cause symptoms in every area of the body.
I know that there are several autoimmune disorders that can cause vasculitus. Vasculitus can even cause some sores to appear on the skin.
Check this web site out for some pictures of vasculitus:
There seems to be a variation to different kinds of vasculitus.
I'm so sorry to hear that you have gotten the run around. There is a autoimmune vasculitus called systemic vasculitus. Vasculitus can cause problems in several areas of you body. For example, central nervous system vasculitus can casue seizures and pyschosis. Vasculitus in the kidney can cause vasculitus nephritus. It can damage the kidney severely. And of coarse it can cause inflamation (inflammation) in the blood vessels itself. So it is more complicated than what you see on the outside of your skin.
I have one rhematologist that thinks that if there is not any organ envolvement then you don't have lupus. While another dr. said I had mild lupus and put me on Plaquenil. There seems to be a difference of opinion when it comes to lupus. I think it is cruel to let someone keep suffering w/o trying to help them. I responded so well with the plaquenil. I so very grateful that my dr. didn't want to stand by and just watch me become an invalid.
Girl, I looked at some pictures I saved on my computer of vasculitus and they look just like your pictures. I scanned them because I can no longer find the web site and saved them. I can e-mail them to you. Just send me your e-mail through a personal "message" and I can send them through an attachment.
Another thing that might be going on is eczema. Not sure how to spell that. It looks like what my skin was doing. I started taking fish oil and flax seed oil to boost my mood and surprisingly the eczema cleared up. But if you indeed have vasculitus, you NEED to tend to that. That can get very serious!
I can post the picture I have of vasculitis on my "nix". It really looks just exactly like the pictures of what is going on in your skin. But I'm not sure if the itchy part is connected to vasculitis. I do know that there are different kinds of vasculitis.
I have been reading this thread and was hoping some of you could look at the pictures in my profile and tell me if you think the rash on my face looks anything like the Lupus rash. I have had it for quite some time now along with lots of other symptoms along the way. The rash never completely goes away, some days it is really bad, and some days it is hardly noticeable. Most of the time my face just looks flushed, but here lately it has been looking almost blistered, and it will get really dry and scaly.
I have several posts in other communities that you can look back through if you wish to read all of my health problems. I have many symptoms that mimic several different disease processes, but through tons of reading and research, I have started to think that it may be Lupus. I have long thought that some of my problems may be some sort of autoimmune disorder, but didn't really know what it could be.
For one, I have a vitamin D deficiency that I have been dx with for several years, and Vit. D deficiency is a major risk factor for developing an autoimmune disorder.
My SED rate and CRP levels are always elevated. My Dr has ran the ANA's before, but they have always been negative.
I have Intracranial Hypertension, and I have found that lots of people that have this disorder also have Lupus.
I gained over 60 pounds when all of my health problems started and don't know why.
I have sensory problems too. I have been checked for MS and that's not it either.
I am always tired no matter how much sleep I get and I always feel bad. I just wish they could find something wrong with me, so I can start treatment and one day start to feel better.
I'm sure I have left out lots of details, and I know this is a bit sketchy and disorganized, but you can go back and read some of my other posts if you like to get a better Idea of my issues.
I don't know if this will work, but on the right side of this screen is recent activities and I just uploaded a new photo of my rash... It has not been biobsy to see if it is Lupus Rash but I will be getting that done on April 15th and will let you know after that.... I believe it is. I've had Lupus 22 years and was just dx almost 2 years ago...
>>>Someone told me to spend time in the sun before my labs were drawn
>>>and if I had lupus it would make the ANA extremely high.
Interesting. I wonder if this would apply to indoor "sun" lights as well. I use them to aid in my depression. I can't remember if I had it on the day before my test, or not... Hmmm, maybe I need to re-take it (without the light)... very intesting.
Just thought I would throw something in. If you have Lupus please don't take herbal stuff or vitamins and help boost or enhance the immune system. People with Lupus have and over active immune system it doesn't need any boosting or enhancing. That could be dangerous. So please be careful what you take.
I don't know if you check back on this or not, but i was reading your posts as i also have small fiber neuropathy with myalgia and burning skin, stomach problems, alopecia...i would like to ask if any of the doctors checked you for Wegeners?
I am also from Ohio...you should probably go to a teaching hospital or Cleveland Clinic...
I am new to this community but I have Lupus, Sjogrens, Fibro, RA. I have been on Plaquenil, Arava, Methotrexate, Steriods and now on Cellcept all in one year since I was DX. Nothing has helped with any of these symptoms that we all suffer from. My doctor doesn't know what to do with me. He is my second opinion and I really like him. He is much better than my first Rhuemy. The only thing that helps is pain medication. I have gone through the gauntlet of medications for alot of my symptoms like nauesa, dizziness, stomach pain, rashes etc.. etc.. Any suggestions?
I'm not sure who you are directing your question to (new to this), but to answer your question, usually a lupus rash is seen on the areas that are exposed by the sun. Sometimes, in addition to the face and upper chest having a rash or discoid lesions, there will be spots elsewhere on the body.
Most of the times, a rash indicates an allergic reaction.
Is that what you are asking or do you mean the joint pain in the leg?
Years ago Dr. Fink thought I had Lupus, I was tested twice but my ANA results came back negative. When Dr. Fink had a stroke, I needed to find another caring doctor. Dr. Catherine Sullivan also tested me & again the ANA results was neg. She then explained, in some cases, a more detailed test should be done.
The test is called "DOUBLE STRANDED DNA" or "DNA (DS)"
My test results read:
DNA (DS) ABS Positive Out of Range 45 H
Hopefully you can get your doctor to do this test for you. I only wish I saw your post much earlier. I also learned (living in East Tennessee) stay out of the sun during 1pm & 5pm, the sunniest & most dangerous time of the day for persons with Lupus.
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