Discussions By Condition: I cannot get a diagnosis.

For crying out loud HELP ME!

Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: justme2008
  • January 3, 2008
  • 04:25 PM

Hello,

I am hoping that someone here might have some insight into what is going on with me. I have an appointment with a rheumatologist tomorrow, but have been going round and round with doctors so much in recent months that I have little faith that I will know anything more after that visit. I am a 35 year old female. I am a mother of 4 and work full time as an RN and am becoming very frustrated with trying to find medical help. I am negative for rheumatoid factor, all arthritis panel labs including ESRD and VDRL are normal. LFT's are normal. CBC is perfect. I don't even have a cholesterol problem. On paper I look great.

1. Joint pain
I have had joint pain that seems to wax and wane for several years (since 2002) that in the past 5 months has gotten markedly more severe and has been accompanied by visible swelling on occasion. My right knee, right elbow and left shoulder seem to be the most affected, but my ankles swell at times too. The only joints I have that never seem to have any pain are my wrists and fingers, which are stiff (and I have a couple of nodules on the fingers of my right hand) but never painful. For the last two weeks my legs and arms have been contractured when I wake up and it takes me about a half hour to get them to move freely again. Also having some coordination problems with my right hand (what has been referred to at work as "nurse dropsies").I am right handed, so this causes a problem for me.

2. Rash on palms
Since 2002 (after getting a tonsillectomy for what I later learned was actinomycosis) I started getting small fluid filled blisters on the palms of my hands (the heel of the palm) that start out as little hard bumps, rupture and drain a small amount of clear fluid then go away. I have had these frequently enough that the heels of my palms are now scarred. My joint pain is markedly worse when the blisters are prevalent.

3. Ulcerations in nose
I have had a large and painful ulceration in my left nostril for 4 months now. It cracks and bleeds and never seems to heal. Last night I got a severe pain in my right eye and nostril and now seem to be developing an ulceration on that side too.

4. Hypersenitivity reactions
I have been told (by a dermatologist) that I am allergic to soaps because I break out in a full body hive like rash every time that I take a shower or bath. I don't think this is the case because I get the rash even when I just use water and sometimes will just wake up with hives on my neck and face. They usually go away on their own within a couple of hours.

Ok, so all of these things together add up to? Not normal. I would appreciate any insights anyone might have about this. I am 35 and I feel like I'm 95.

Thanks!

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15 Replies:

  • Joint pain, palm rash and hypersensitivity allergic reactions like hives are generally due to erythema nodosum which can be caused by bacterial, fungal and viral infections etc. The doctors usually prescribe anti-inflammatory drugs or corticosteroids.
    Anonymous 42789 Replies
    • January 3, 2008
    • 05:45 PM
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  • Part of it might be systemic gout:http://en.wikipedia.org/wiki/Gout I need to meditate on what the rest may be...you've been checked for MRSA??? You are always exposed to it in the hospital setting, but I'm not sure if you fit the symptoms. The nose ulceration and hands lead me to that...have you been checked for syphilis? The information about gout stated that a rash-like may develop due to a fungus. Perhaps it's a fungus on your hands...have you been to a dermatologist?check these out:http://www.mylifetime.com/lifestyle/health/health-a-z/vasculitis-overview http://www.mdconsult.com/das/pdxmd/body/84999360-2/0?type=med&eid=9-u1.0-_1_101_1014573 http://www.pediatrics.emory.edu/pem/epg/documents/5261.pdf
    Monsterlove 2921 Replies
    • January 3, 2008
    • 07:12 PM
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  • How is your digestion? Gas and bloating after you eat? Diarrhea or loose stools or constipation symptoms? How is your period, is it regular? Do you have mood swings or severe PMS? Any dysmenorrhea? How is your urination? Frequent? Any urgency, or incontinence? Do you have any emotional changes or are you easily irritable? Lastly, are you on birth control or do you take any medications currently? DOM
    acuann 3080 Replies
    • January 3, 2008
    • 07:15 PM
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  • I think you might have a herpes simplex in your nostril. Have you tried a course of acyclovir or whatever is best for this? Do you think you have had herpes whitlow on your hands? Also the nodosum sounds right also.
    rad-skw 1605 Replies
    • January 4, 2008
    • 00:53 PM
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  • Let's look back at that case of actinomycosis that she had. If you do your research, you'll find that it can produce the sores and even go into Osteomyelitis.I believe that she has something along the line of Stevens-Johnson syndrome or erythema multiforme (or nodosum) which would require a visit to the dermatologist. Apparently, this is very frequently mis-diagnosed.Still needs the syphilis test.
    Monsterlove 2921 Replies
    • January 4, 2008
    • 09:23 PM
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  • Uhm, if you have Stevens-Johnsons- you might be better of in an intensive care unit. aka Toxic Epidermal Necrolysis.
    fewd4thought 126 Replies
    • January 5, 2008
    • 02:15 AM
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  • Dear 2008:After reading your post, I would like to recommend you to look very closely at your personal care products and your diet. Look at it closely and look for guidance as far as what might be harmful and what can be improved.A drastic change of diet worked for me- as far as going cold turkey with pastries, sodas, artificial ingredients, aspartame, etc. I increased water, and fruit intake, hence my username is Eat-a-fruit.To stimulate the body to resolve those unwanted symptoms, I used acupuncture and a treatment called NAET. I received gradual resultsand I am happy I used them.May You Get Well Soon.I'll pray for you to find the way to restore your health.God Bless,Fruity.
    Eatafruit78 960 Replies
    • January 5, 2008
    • 03:55 AM
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  • Honey......it would have been good were you able to keep your tonsils. They are a very important part of your immune system...nonetheless....you may be possibly on your way to Type 2 diabetes from the sound of your symptoms.Which means, you are going to have to lose weight, watch carefully what you eat, get your heart rate up for 20 minutes a day, 4 times a week and possibly be on oral insulin. Get a 4 hour glucose tolerance test (and don't cheat after midnight). You didn't mention your weight, but I suspect, because of the stress endured by nurses, that it might not be ideal. (Neither is mine, if it makes you feel any better).Good luck to you.
    Anonymous 42789 Replies
    • January 5, 2008
    • 04:47 AM
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  • Have you had a 24 hour heavy metal urine screen?
    Anonymous 42789 Replies
    • January 5, 2008
    • 05:57 PM
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  • Joint pain: I assume you do a lot of repetitive motions at work being a nurse. You probably go to a patients bed to deliver medicine (bending/stretching over always on the same side, stressing your knee and shoulder) and fiddle with small objects like needles etc. And you probably spend too much time on your feet. Have you tried taking a long vacation to see if it gets better? I HIGHLY recommend yoga (NOT the hot fast Bikram style, but the slower, gentle, meditative yoga). It would be a great workout and it will help your joints, but you MUST take it slowly at first. Yoga looks easy, but it's definitely a workout.Blisters on palms: I have no clue what's causing that. Could be an allergy to something you're working with at work. You'd be surprised to find out how toxic your work environment is. Nurses often miscarry, get sick, get cancer, etc. because of their daily intake of toxic and irritating chemicals. Google it.Nostril ulcerations: I've gotten ulcerations after having been sick, usually when my immune system is down and I've been blowing my nose a lot. I use Bactroban (applying it all day to keep the area moist) to heal the ulcers. These resemble herpes, but they're not - so if you've been tested for herpes already, it could be these bacterial ulcers, especially if they spreads down to your upper mouth.Hypersenitivity reactions: Chlorine allergy - your water is probably chlorinated, and there are people who are terribly allergic. A friend of mine was a swimmer, and she still couldn't attend every practice because she would get a rash every time. But she loved swimming so much her coach let her still be on the team. Try getting a chlorine filter for your shower head. I'm obviously not a doctor, but my advice to you would be to COMPLETELY change your routine and see if it gets better. Take a vacation to Hawaii and only shower in non-chlorinated water (perhaps the ocean water), eat foods that don't give you allergies...basically remove everything from your daily life for a week and see what happens. Seems like your body is telling you that it's fed up with whatever your'e doing to it.
    Anonymous 42789 Replies
    • January 5, 2008
    • 09:12 PM
    • 0
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  • Okay, I have read all of your many responses and I thank you kindly...mostly. ;)I guess a little more info would help...I wrote that first post in a mild tantrum of frustration. Here are a few extra facts in response to some of the inquiries here...I had the VDRL a year ago when a doctor suggested I might have secondary syphillis...it was negative. I have been nasal swabbed for MRSA, result negative. I'm 5'9" and weigh 160lbs, which is about 10 lbs more than I'm comfortable with, but is not considered overweight and my HgA1c suggests that I'm not bordering on diabetes (I have had a few episodes of hypoglycemia though....headache and glucose in the 60's). I'm a vegetarian bordering on vegan, I use natural products whenever possible, I have tried acupuncture and naturopaths more than once with a result of no real change. As for mood swings and irritability..I guess sometimes I am, but according to all of my friends I'm a pretty even keel sort of person, just a little snippy when my kids are leaping off the furniture and running around like a herd of buffalo. Normal stuff. As for menstruation, I have been told I'm peri-menopausal which I thought was a little strange at the time for a 35 year old, but then found out this seems to be normal for the women in my family. Also, went to the rheumatologist (second one) on Friday...he thinks it could sarcoidosis. At this point I'm not even speculating.Again, thanks for the advice from all of you. Especially the chlorine filter idea...hand't thought about that one. Will be buying one tonight. As far as being exposed to toxicity in the workplace, I have no argument there. I work in germ paradise, but someone has to do it. Vacation in Hawaii sounds pretty nice though :rolleyes:
    justme2008 5 Replies
    • January 7, 2008
    • 07:28 PM
    • 0
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  • oh yeah, forgot the meds: No birth control pills, just arthrotec on bad days. Nothing else except for Omega's and and iron free multi-vit
    justme2008 5 Replies
    • January 7, 2008
    • 07:35 PM
    • 0
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  • Hi I've just across your post and I think I might be able to help you with regard to the first problem you have .... it sounds as though you have palendromic rheumatoid athritis.Palendromic just means intermittent and of course the rest makes sense!I also spent a number of years bouncing from doctor to doctor regarding pain in my finger joints and feet that would come and go. I was also tested for everything under the sun and on paper I looked fine as well.The problem is you need to have the blood tests done when the athritis is active and then it will show up in the blood but if you're anything like me you can't predict when you're going to have an attack!I'm in Australia and I've got a fantastic rheumatologist who used alternative medicines with me before progressing to the conventional drugs. Bascially the deal with Palendromic Rheumatoid Athritis is it usually affect only females and presents between the ages of 30-35. It can remain static in that you only get it from time to time or it can progress to where you get attacks more frequently which is where I ended up after two years.I understand your frustration and pain, there were some days I couldn't even hold a brush to brush my hair! But there are treatments and the one I'm on is designed to halt and hopefully turn back the disease progression.The most important thing is that you are diagnosed and treated as quickly as possible to avoid any long term joint damage.I hope this helps! :)
    Anonymous 42789 Replies
    • January 7, 2008
    • 09:21 PM
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  • My daughter has "Stills Disease." She can get arthritis in any joint and it moves around. The rash looks like hives and can be worse after a bath. Google Stills Disease and look at the rash on there website to compare. Once she got blisters all over like you were talking about. She used to get really high fevers and sometimes (before she got put on meds) she couldn't even walk from the joint pain. You might check into that. Now that she is on medication - Methotrexate - she is 100% normal and pain and rash free. I hope you find answers. Oh, if you have the rash right now, try this test.... On a clear spot on your skin, like on your arm, gently scratch an x with your finger nail. In about 2 minutes, look at your arm and see if there is a rash in the shape of that x. If so, thats a good indicator.Good luck and God Bless you.
    jmr2000 8 Replies
    • January 21, 2008
    • 07:56 PM
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  • I am sorry you are going through such a trial trying to get diagnosed. I hope the new rheumatologist will get to the bottom of things. Hopefully he/she is looking for other things besides the sarcoid, in case it isn't sarcoid. There are other granulomatous diseases such as Wegener's granulomatosis. Also, it could be something like a vasculitis. Or something else like celiac disease?These autoimmune/rheum types of things usually strike women in their 30's, so this part of your description fits.I have no idea what is wrong with you, but am so sorry to hear you are going through such an ordeal trying to get it figured out. Two things that would have helped me:1. Do not listen to doctors if they start to tell you it is psychosomatic if all your tests come back negative2. Do not give up until you find a doctor who says: "I know what you have! It is called..."Best Wishes!
    Anonymous 42789 Replies
    • January 21, 2008
    • 08:36 PM
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