Discussions By Condition: I cannot get a diagnosis.

Help Deciphering Test Results and Symptoms

Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: Harmonium
  • March 12, 2009
  • 02:25 AM

Okay. I would greatly appreciate any help deciphering these symptoms and test results. Please, any help you can give is very much appreciated (but Blaze, please take this seriously). I apologize for the length, I wanted to include everything.

I'm a 32 year old female, 125lbs and 5'6"

Symptoms:
1. Joint Pain-- chronic since childhood. Commonly effects knees and shoulders, hips too. Gets very severe at times. Worse in mornings. Not usually accompanied by swelling, but sometimes. Joints hot to the touch. Does interfere with normal movement. All joints pop, including the hip.
2. Muscular pain, systemic. partially relieved with weekly massage and trigger point therapy, stretching.
3. Hair-- has recently coming out more. I don't have any bald spots or anything, but it comes out in clumps especially when wet. Also, a few facial hairs, dark black and coarse (on chin)--come back in the same spots when plucked. Also very weak, brittle, thin nails that do not grow easily.
4. Generalized Fatigue-- does not matter how much I sleep, I'm always fighting for energy. Diet does not seem to affect this.
5. Anxiety and Depression-- chronic MDD lasting 20+ years. I have been depression-free since Aug 07, mostly anxiety-free as well. Do not feel anxious about my health, more social situations.
6. Very Flexible-- I'm 32 and can still do splits easily, my shoulders have extreme ROM as do my hips and wrists.
7. Very Dry Eyes-- cannot wear contacts for more than a few hours, recently (last year) developed astigmatism. Lately it feels sometimes as if my eyes 'flutter' in their sockets, usually when I am trying to focus on something there is this weird sensation of 'fluttering'; it's difficult to describe, but very brief. Drops don't help.
8. Dry Mouth-- I constantly have to have something to drink
9. Intolerance to hot or cold-- I can never seem to regulate my temperature. Always more cold than others, even in a heated room. If it's really hot outside, cannot seem to cool, become very flushed, heat rashes, lethargy. Actual body temp when tested is usually low @ 97.0 F
10. Seizures in past-- more than 7 years ago, I had a succession of Grand Mal seizures, about 4-5 of them over a two year period.
11. Chronic basilar migraine-- diagnosed in 1993 following an occipital bone fracture.
12. Commonly feel faint when standing from a seated position. Do not actually 'black-out', but vision clouds very darkly and it feels like the room is spinning. I have to sit back down until I regain normal parameters.
13. Fingers and hand turn stark-white upon compression or cold.
14. Weight Gain-- gained 10 pounds since Thanksgiving. I attributed the gain to the holiday's, but it is still present. My diet is good and I exercise regularly. I was 115lbs for 7 years, all of a sudden I'm 125lbs.
15. Sense of smell absent....well, it must be a Very strong odor. My sense of taste is also not as good as other, but better than my smell.
16. Chronic insomnia--since childhood. Very deep sleeper once asleep--nothing wakes me up.
17. Granuloma Annulare-- on dorsal feet 3 yrs)and now hands. (new)
18. IBS-- diarrhea predominant.
19. Chronic and worsening memory, even when actively trying to remember. Have trouble with both long-term and short-term memory. Difficult to form new memories and I seem to be loosing the old ones.
20. Difficulty Concentrating-- I have read even the most difficult novels, yet now cannot seem to concentrate on even the easiest read. Mind wanders and looses track, even when actively trying to concentrate. Always done very well in school (top 2 percentile), high IQ.


Family history and lifestyle:
Been previously diagnosed as both CFS and FMS, but I don't believe I have either. Same doc diagnosed both when he couldn't come up with anything else--told me it was a 'bucket' diagnosis. I now have a new GP. I have a history of marijuana and LSD use, but that was long ago (it's been years since either, especially the LSD). I also used to smoke cigarettes, now free of them. Do not drink regularly- a single glass of wine with dinner occasionally.

Father had Guillain-Barre. Grandfather history of cardiac issues-- CHF, 3 triple-bypass surgeries. Both brother and father have esophageal reflux and strictures. Both grandfathers had prostate cancer. Grandmother has arthritis (RH). Mother, now deceased, had Multiple Sclerosis and lung cancer. Mother was adopted, no family history on that side.

I am very, very fair-skinned, almost translucent. I burn easily.

I am a very active person ordinarily. The joint pain does affect this, but I can usually run several miles at a time several times a week. Practice yoga and meditation regularly. I have always had a healthy diet, rich in 'real', non-processed food. I was a practicing vegetarian for almost two decades, but I was very careful about balancing proteins. I eat meat now, but in moderation. Fish is a diet staple to me.

Tests:
No history of allergies--tested negative for all but a very small subcutaneous reaction to red meat and chocolate.
RA Factor-- 10.00IU/mL (0.0-13.9) normal
Sed Rate Erythrocyte-- 20 (0-23) normal
TSH-- 1.24 (0.32-5.00) normal
Uric Acid Blood-- 3.1mg/dl (2.1-7.4) normal
ANA-- 116 AU/mL (0-99) HIGH

I have previously had normal CBC and Chem Panels, but have not had one recently. Normal cholesterol. Normal HR and BP (70, 110/80). Normal glucose.

Can anyone help me figure out what's wrong? I am being sent to a rhumatologist. Any ideas for questions or test that I should ask about?

Please, I want to know what, if anything, is wrong, why I feel so crummy no matter what I do. Any help is appreciated. I have no idea if my symptoms are connected, but I wanted to be thorough just in case.

Reply Flag this Discussion

15 Replies:

  • Okay. I would greatly appreciate any help deciphering these symptoms and test results. Please, any help you can give is very much appreciated (but Blaze, please take this seriously). I apologize for the length, I wanted to include everything. I'm a 32 year old female, 125lbs and 5'6" Symptoms:1. Joint Pain-- chronic since childhood. Commonly effects knees and shoulders, hips too. Gets very severe at times. Worse in mornings. Not usually accompanied by swelling, but sometimes. Joints hot to the touch. Does interfere with normal movement. All joints pop, including the hip.2. Muscular pain, systemic. partially relieved with weekly massage and trigger point therapy, stretching. 3. Hair-- has recently coming out more. I don't have any bald spots or anything, but it comes out in clumps especially when wet. Also, a few facial hairs, dark black and coarse (on chin)--come back in the same spots when plucked. Also very weak, brittle, thin nails that do not grow easily. 4. Generalized Fatigue-- does not matter how much I sleep, I'm always fighting for energy. Diet does not seem to affect this. 5. Anxiety and Depression-- chronic MDD lasting 20+ years. I have been depression-free since Aug 07, mostly anxiety-free as well. Do not feel anxious about my health, more social situations.6. Very Flexible-- I'm 32 and can still do splits easily, my shoulders have extreme ROM as do my hips and wrists. 7. Very Dry Eyes-- cannot wear contacts for more than a few hours, recently (last year) developed astigmatism. Lately it feels sometimes as if my eyes 'flutter' in their sockets, usually when I am trying to focus on something there is this weird sensation of 'fluttering'; it's difficult to describe, but very brief. Drops don't help. 8. Dry Mouth-- I constantly have to have something to drink9. Intolerance to hot or cold-- I can never seem to regulate my temperature. Always more cold than others, even in a heated room. If it's really hot outside, cannot seem to cool, become very flushed, heat rashes, lethargy. Actual body temp when tested is usually low @ 97.0 F10. Seizures in past-- more than 7 years ago, I had a succession of Grand Mal seizures, about 4-5 of them over a two year period. 11. Chronic basilar migraine-- diagnosed in 1993 following an occipital bone fracture. 12. Commonly feel faint when standing from a seated position. Do not actually 'black-out', but vision clouds very darkly and it feels like the room is spinning. I have to sit back down until I regain normal parameters. 13. Fingers and hand turn stark-white upon compression or cold. 14. Weight Gain-- gained 10 pounds since Thanksgiving. I attributed the gain to the holiday's, but it is still present. My diet is good and I exercise regularly. I was 115lbs for 7 years, all of a sudden I'm 125lbs. 15. Sense of smell absent....well, it must be a Very strong odor. My sense of taste is also not as good as other, but better than my smell. 16. Chronic insomnia--since childhood. Very deep sleeper once asleep--nothing wakes me up. 17. Granuloma Annulare-- on dorsal feet 3 yrs)and now hands. (new)18. IBS-- diarrhea predominant. 19. Chronic and worsening memory, even when actively trying to remember. Have trouble with both long-term and short-term memory. Difficult to form new memories and I seem to be loosing the old ones. 20. Difficulty Concentrating-- I have read even the most difficult novels, yet now cannot seem to concentrate on even the easiest read. Mind wanders and looses track, even when actively trying to concentrate. Always done very well in school (top 2 percentile), high IQ. Family history and lifestyle:Been previously diagnosed as both CFS and FMS, but I don't believe I have either. Same doc diagnosed both when he couldn't come up with anything else--told me it was a 'bucket' diagnosis. I now have a new GP. I have a history of marijuana and LSD use, but that was long ago (it's been years since either, especially the LSD). I also used to smoke cigarettes, now free of them. Do not drink regularly- a single glass of wine with dinner occasionally. Father had Guillain-Barre. Grandfather history of cardiac issues-- CHF, 3 triple-bypass surgeries. Both brother and father have esophageal reflux and strictures. Both grandfathers had prostate cancer. Grandmother has arthritis (RH). Mother, now deceased, had Multiple Sclerosis and lung cancer. Mother was adopted, no family history on that side. I am very, very fair-skinned, almost translucent. I burn easily. I am a very active person ordinarily. The joint pain does affect this, but I can usually run several miles at a time several times a week. Practice yoga and meditation regularly. I have always had a healthy diet, rich in 'real', non-processed food. I was a practicing vegetarian for almost two decades, but I was very careful about balancing proteins. I eat meat now, but in moderation. Fish is a diet staple to me. Tests:No history of allergies--tested negative for all but a very small subcutaneous reaction to red meat and chocolate. RA Factor-- 10.00IU/mL (0.0-13.9) normalSed Rate Erythrocyte-- 20 (0-23) normalTSH-- 1.24 (0.32-5.00) normalUric Acid Blood-- 3.1mg/dl (2.1-7.4) normalANA-- 116 AU/mL (0-99) HIGH I have previously had normal CBC and Chem Panels, but have not had one recently. Normal cholesterol. Normal HR and BP (70, 110/80). Normal glucose. Can anyone help me figure out what's wrong? I am being sent to a rhumatologist. Any ideas for questions or test that I should ask about? Please, I want to know what, if anything, is wrong, why I feel so crummy no matter what I do. Any help is appreciated. I have no idea if my symptoms are connected, but I wanted to be thorough just in case. Don't know much about what your experiencing but would like to tell you someting about a guy I knew. This guy was an athlete and worked out constantly. Was a vegatarian and ate lots of fish. He ran in three or four marathons. (Boston and New York) Then out of the blue he got sick. Bad headaches, bad fatigue, joint pain, shortness of breath, skin discoloration. I bet he went to six doctors over a five year span before the last guy tested him for mercury poisoning. Sure enough thats what it was. They told him between the mercury in the fish and the can over the last 20 years it built up in his body enough that it started to cause problems. The doctor told him that almost all fish have some mercury in them and if they are canned they have even more. He had to take some pills and other stuff for heavy metal detox but was fine after that. Just a thought. Hope it helps.
    MTNUTHOUSE 4 Replies Flag this Response
  • get well soon hope some one helps you out.
    Anonymous 42789 Replies Flag this Response
  • Most of the things you are talking about are symptoms of late stage Lyme disease. A lot of people diagnosed with Fibro will test positive for Lyme. Most likely your Dr won't take it seriously if you ask about Lyme. I tested positive for Lyme with a western blot, my Dr (former Dr) still wouldn't treat for Lyme:mad:! There is a huge controversy about Lyme, and people are dying while Dr's fight each other, and the insurance co's. Good luck!
    william rathbun 7 Replies Flag this Response
  • Sounds like Lyme disease to me. Ask your doctor to do a test for that. There are medications available for that condition so you really don't have to live like that.
    NeverGiveUpBoy 26 Replies Flag this Response
  • Okay. I would greatly appreciate any help deciphering these symptoms and test results. Please, any help you can give is very much appreciated (but Blaze, please take this seriously). I apologize for the length, I wanted to include everything. I'm a 32 year old female, 125lbs and 5'6"Symptoms:1. Joint Pain-- chronic since childhood. Commonly effects knees and shoulders, hips too. Gets very severe at times. Worse in mornings. Not usually accompanied by swelling, but sometimes. Joints hot to the touch. Does interfere with normal movement. All joints pop, including the hip.2. Muscular pain, systemic. partially relieved with weekly massage and trigger point therapy, stretching. 3. Hair-- has recently coming out more. I don't have any bald spots or anything, but it comes out in clumps especially when wet. Also, a few facial hairs, dark black and coarse (on chin)--come back in the same spots when plucked. Also very weak, brittle, thin nails that do not grow easily. 4. Generalized Fatigue-- does not matter how much I sleep, I'm always fighting for energy. Diet does not seem to affect this. 5. Anxiety and Depression-- chronic MDD lasting 20+ years. I have been depression-free since Aug 07, mostly anxiety-free as well. Do not feel anxious about my health, more social situations.6. Very Flexible-- I'm 32 and can still do splits easily, my shoulders have extreme ROM as do my hips and wrists. 7. Very Dry Eyes-- cannot wear contacts for more than a few hours, recently (last year) developed astigmatism. Lately it feels sometimes as if my eyes 'flutter' in their sockets, usually when I am trying to focus on something there is this weird sensation of 'fluttering'; it's difficult to describe, but very brief. Drops don't help. 8. Dry Mouth-- I constantly have to have something to drink9. Intolerance to hot or cold-- I can never seem to regulate my temperature. Always more cold than others, even in a heated room. If it's really hot outside, cannot seem to cool, become very flushed, heat rashes, lethargy. Actual body temp when tested is usually low @ 97.0 F10. Seizures in past-- more than 7 years ago, I had a succession of Grand Mal seizures, about 4-5 of them over a two year period. 11. Chronic basilar migraine-- diagnosed in 1993 following an occipital bone fracture. 12. Commonly feel faint when standing from a seated position. Do not actually 'black-out', but vision clouds very darkly and it feels like the room is spinning. I have to sit back down until I regain normal parameters. 13. Fingers and hand turn stark-white upon compression or cold. 14. Weight Gain-- gained 10 pounds since Thanksgiving. I attributed the gain to the holiday's, but it is still present. My diet is good and I exercise regularly. I was 115lbs for 7 years, all of a sudden I'm 125lbs. 15. Sense of smell absent....well, it must be a Very strong odor. My sense of taste is also not as good as other, but better than my smell. 16. Chronic insomnia--since childhood. Very deep sleeper once asleep--nothing wakes me up. 17. Granuloma Annulare-- on dorsal feet 3 yrs)and now hands. (new)18. IBS-- diarrhea predominant. 19. Chronic and worsening memory, even when actively trying to remember. Have trouble with both long-term and short-term memory. Difficult to form new memories and I seem to be loosing the old ones. 20. Difficulty Concentrating-- I have read even the most difficult novels, yet now cannot seem to concentrate on even the easiest read. Mind wanders and looses track, even when actively trying to concentrate. Always done very well in school (top 2 percentile), high IQ. Family history and lifestyle:Been previously diagnosed as both CFS and FMS, but I don't believe I have either. Same doc diagnosed both when he couldn't come up with anything else--told me it was a 'bucket' diagnosis. I now have a new GP. I have a history of marijuana and LSD use, but that was long ago (it's been years since either, especially the LSD). I also used to smoke cigarettes, now free of them. Do not drink regularly- a single glass of wine with dinner occasionally. Father had Guillain-Barre. Grandfather history of cardiac issues-- CHF, 3 triple-bypass surgeries. Both brother and father have esophageal reflux and strictures. Both grandfathers had prostate cancer. Grandmother has arthritis (RH). Mother, now deceased, had Multiple Sclerosis and lung cancer. Mother was adopted, no family history on that side. I am very, very fair-skinned, almost translucent. I burn easily. I am a very active person ordinarily. The joint pain does affect this, but I can usually run several miles at a time several times a week. Practice yoga and meditation regularly. I have always had a healthy diet, rich in 'real', non-processed food. I was a practicing vegetarian for almost two decades, but I was very careful about balancing proteins. I eat meat now, but in moderation. Fish is a diet staple to me. Tests:No history of allergies--tested negative for all but a very small subcutaneous reaction to red meat and chocolate. RA Factor-- 10.00IU/mL (0.0-13.9) normalSed Rate Erythrocyte-- 20 (0-23) normalTSH-- 1.24 (0.32-5.00) normalUric Acid Blood-- 3.1mg/dl (2.1-7.4) normalANA-- 116 AU/mL (0-99) HIGHI have previously had normal CBC and Chem Panels, but have not had one recently. Normal cholesterol. Normal HR and BP (70, 110/80). Normal glucose. Can anyone help me figure out what's wrong? I am being sent to a rhumatologist. Any ideas for questions or test that I should ask about? Please, I want to know what, if anything, is wrong, why I feel so crummy no matter what I do. Any help is appreciated. I have no idea if my symptoms are connected, but I wanted to be thorough just in case.Well,first of all you have an inflammatory type of arthritis since they're hot to touch.There are many possibilities as to which kind you have,but I am thinking that an autoimmune disease could account for most of your symptoms.I saw that your ANA was a bit elevated,but do you know the actual titer of it(how strongly positive it is)?I'm surprised at your normal sed rate,which didn;t indicate any inflammation.There are other more specific antibody test that the rheumatologist will likely run.I just hope you get some answers soon.Another observation:you said you have little energy but that you can run severak miles at a time.That seems contradictory.Too,with your dry eyes and mouth Sjogren's syndrome comes to mind.Good luck.
    richard wayne2b 1232 Replies Flag this Response
  • Too. look up ''dysautonomia.''Some of your symptoms fit into that.
    richard wayne2b 1232 Replies Flag this Response
  • Thank you all for responding!! :DTo NeverGiveUpBoy and William: I have had the very sensitive testing for Lyme and I was negative, but I agree some of the symptoms fit. I will ask for another test just in case. To Dr. Wayne:There are other more specific antibody test that the rheumatologist will likely run.I just hope you get some answers soon.Another observation:you said you have little energy but that you can run severak miles at a time.That seems contradictory.Too,with your dry eyes and mouth Sjogren's syndrome comes to mind.Good luck.Can you tell me what tests I need to make sure get run? I am tired all the time, I just no longer want to live my life on the couch--I did that for years. I really, really push myself to be able to have the energy to run. I never really feel like I can do it but I wind up pushing myself into it. It takes quite a bit out of me, but I know I must be healthier from it. I'm willing to do whatever it takes. The only rashes I have are biopsy-diagnoses GA, which is confusing to me with most of the autoimmune. I'm thinking I may have some sort of arthritis, but wouldn't my SED rate be higher? The results of the test I have don't look like a titer-test. It says: ANA Direct: result: 116 units: AU/mL range:0-99 it's marked high by my doctor's nurse, in her handwriting. Says follow up with Rheumatologist. I will look up dysautomomia, but I seem to remember that not quite fitting. Thank you all! Omar, thanks for your support. If anyone has any idea about which test I should get or anything else this could be I would appreciate that very much.
    Harmonium 322 Replies Flag this Response
  • They can biopsy your lip to diagnose Sjogren's syndrome.Your ANA needs a titer done on it.Plus,it would be helpful to know the pattern of the positive ANA.
    richard wayne2b 1232 Replies Flag this Response
  • Just because your test for Lyme is not positive, does not mean you do not have it. I have tested positive and negative. The test is for antibodies, you will only test positive if you are CURRENTLY producing antibodies. Leslie Wermers, my friend's sister died in November at the age of 41. A few years back, they got copies of her medical records, and found out that she had tested positive 10 years before, and her Dr never told her. You should get copies of any test for Lyme. What kind of test did they give you? Was it an ELISA? aka the most unreliable test for Lyme? or was it western blot? Usually your Dr won't order western blot unless Elisa or EIFA is positive or equivocal, a result that should set off an alarm. I would suggest you talk with someone at ILADS. If what you are facing is Lyme, you will be very much on your own when it comes to medical treatment. Get your own copy of the test, research the test.
    william rathbun 7 Replies Flag this Response
  • They can biopsy your lip to diagnose Sjogren's syndrome.Your ANA needs a titer done on it.Plus,it would be helpful to know the pattern of the positive ANA.Thank you very kindly, Dr. Wayne. I will suggest such tests from my doctors and I will gladly post them when I get the results. I really do appreciate your help! :D
    Harmonium 322 Replies Flag this Response
  • Well, I just thought I would update this. I really do thank all of the responders to my posts-- it has helped and I thank you all for your time and effort. I've been to see my Rheumatologist twice now. The first visit was 4 and 1/2 hours long-- very thorough! The second visit was over 2 hours.....much more time than I am used to receiving with any type of doctor. I'm impressed with my doc, he really seems to not only know what he is talking about, but he actually listens to me. While there, he pulled about 10 tubes of blood for extensive work-ups as well as took x-rays of my knees and lumbar spine. I've been diagnosed with Reynaud's (Secondary), probable Sjorgen's (I had a tear test done, bone dry, but no biopsy as the treatment is the same), Secondary Fibromyalgia..............and LUPUS (SLE). It seems a bit odd that I can have all of these autoimmune issues going on at once (including the preexisting Granuloma Annulare), but I'm told that is very common. I also tested very deficient for vitamin D....I got a 6 and it's supposed to be over 25. I've been place on Ultram 50mgs one or two every 6 hours for pain. I've also been placed on Paquenil 200 mg at night, an anti-malarial drug thought to be helpful with lupus. In addition, I'm now on prescription vitamin D once a week. I'm told it can take months for the Paquenil to begin working beneficially. So far, I'm not having any side effects other than maybe a decrease in appetite (which I'm not complaining about!). I'm hoping it kicks in a bit early for me as I'm loosing my hair now for about a month. I wake up and large clumps are on the pillow, I shower and when I comb my hair afterwards....it's just falling out all over. No bald spots yet, thank goodness I have thick hair to begin with! I'm also being sent for a sleep study. Because I've always had trouble falling asleep, and sleep can have quite an effect on most of my symptoms the Rheumie thought it would be a good idea. Why not? I'd like to know the quality of sleep I'm actually getting and maybe even be able to ditch my sleep meds-- the less meds the better if you ask me! Over-all, I'm a little scared. One the one hand, I feel validated that I have a diagnosis because for years I was told all of this is was 'just in my head'. I now know that is not the case. However, although I do not have any organ involvement at the moment.....who know's what the future holds. It's a very unpredictable disease. I am taking better care of myself (making sure I get enough sleep, eating no processed or otherwise unhealthy foods, no soda's and I'm trying to exercise as much as I can. I think the best thing for me to do (in addition to the lifestyle changes) is to keep a positive attitude, so I'm trying my best to do that. It doesn't help that my mother died at the age of 42 with her own brand of auto-immune. Just thought you guys would want to know. Any advice or resources anyone could point me towards would be great. Again, thanks for listening!
    Harmonium 322 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • I am so pleased that you finally have a diagnosis. Remember, there are all sorts of new drugs on the horizon to treat auto immune diseases, so the future is definitely rosy!I wish you all the very best.
    NeverGiveUpBoy 26 Replies Flag this Response
  • Were you checked for Ehler-Danlos syndrome?Some symptoms can be red herrings but some of the most outstanding ones you describe sound like that syndrome.
    Anonymous 42789 Replies Flag this Response
  • My first thought was rheumatoid arthritis, which is common with SLE, and possible thyroid issues. Then I read that you got your diagosis. I'm glad you know what you're dealing with but I'm sorry it was such a whammy. SLE used to be a death sentence when my grandmother got it in 1973. She was gone within months. The condition is so treatable now but can take time to get under control. A good friend of mine has it. Within a year, she had to have bilteral knee replacements but is doing great now. If yoo find yourself getting discouraged by the joint aches and pains, watch the video from the link below. It's Donna McKechnie. She was in the original cast of A Chorus Line on Broadway. She played Cassie, which is probably the most physically demanding role in that play. She had to leave the show because she developed rheumatoid arthritis at a young age. She could not even get out of bed. She was told she would never walk again, let alone dance. Donna was 48 years old with rheumatoid arthritis when she filmed this: http://www.youtube.com/watch?v=LvyX3RUXjF0 Here's a link to her web site. She touches on the diet that helped her go back to dancing like she's never suffered a day in her life: http://www.youtube.com/watch?v=LvyX3RUXjF0 Best of luck to you, and I know about the whole family history worries. My dad's mom is the one who had the SLE and was dead by her early 50s (like, I said, there wasn't much they could do 35 years ago). My mom has had a whole host of problems. Take care!Tammy
    Vikefantam 30 Replies Flag this Response
  • Thank you all for the replies! I didn't know anyone saw my update, I just found out. I really appreciate the input and well-wishes! NeverGiveUpBoy-- The future is indeed Rosy. I've got a fighting spirit......SLE won't stop me! Taking the Paquenil is a big step for me emotionally (I don't like meds, especially 'strong' ones), but I agree that medicine has come a long way. So far, so good. It might take some tweaking with the meds, but I'll find the right combo.Dermatophagoides-- I don't think I've been checked specifically for Ehlers-Danlos syndromes. I have had several skin biopsy over the years, but I don't know if they were looking for that. While I do have extreme flexibility, I'm not hyper-mobile. I'm not double-jointed as it were. My skin is thin....but I don't think mine is as severe as with that. I also only bruise easily when I'm anemic, which happens occasionally. So, I don't think this is a good possibility considering my existing diagnoses, but I will ask my doc about it. Thank you for the suggestion! Vikefantam-- That was a very inspirational story and video! They were both the same one; I'd love the one of her website if you don't mind sharing it. Thank you! I'm sorry for your own family troubles with SLE. It's no fun with this type of illness (auto-immune) in the family. I know they say it's not really genetic.......but there is some kind of link. I'm not sure I'm going to try to have kids because of all this.....I thought about thyroid and arthritis too. Both have been ruled out with blood-work and x-rays. I was surprised actually. But I suppose it's good NOT to have some things, lol! Thank you all. My sleep study is next week--I'll post the results. I will also have my blood-work to post.
    Harmonium 322 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.