Really could use some input

Really could use some input

Posted In: 9 Replies
  • Posted By: nysblondie
  • October 18, 2007
  • 06:50 PM

I am a 39 yr old woman that has generally been healthy most my life, over the last several years I seem to be adding to the list of symptoms though and am getting more and more frustrated with no doctor finding out what is wrong.
Fatigue is probably the first and major symptom, then came extreme joint pain (got tested for RA) wasn't that, also was treated for depression for years, then tested for sleep apnea wasn't that. Then I developed stomache problems, put on Nexium.
I finally did have a complete blood work panel done and was told my ANA "titer"? sorry not sure about terms was "off". I have the skin sores on my arms and face (no butterfly) just sores like many have spoken of and have also developed a sunsitivity to sun, which I used to love to be in and now I can't stand 5 mins in it. The sore also seem worse in the summer. I have head aches and my concentration level is diminishing as well.
I had heard everything from I am depressed to SAD to it is all in my head and my doctor even wanted to just put me on monthly penicillian treatments for a year to see what happened.

I seem to have been tested for just about everything from MS, sleep disorders, Arthritis, and nothing. Some days I am so exhausted I can not do anything (even shower), oh I also have cold hands and feet and stiffness (mostly in the morning and then sometimes again late at night.

I feel physically and mentally drained and would really just like to finally find out what is wrong with me. I would appreciate any comments or suggestions. I have had quite a few people tell me it is lupus and to just keep trying Doctors, but now I am out of work because of the pain and feeling drained and I am really tired of feeling like no doctor will listen to me or that I am "sick in the head."

Please anyone!

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9 Replies:

  • Lupus can be very hard to diagnose and it can take something like 10+ years. The only suggestion I have for you is to treat your symptoms as well as you can and to keep testing for lupus and other diseases. Belive me, I know how frustrating it can be. I am trying to find out what is wrong with my body too, and have been for a long time now. Hang on...
    Anonymous 42789 Replies
    • October 18, 2007
    • 09:55 PM
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  • I have autoimmune diseases and share some of your symptoms. Possibilities to ask your doctor to test you for are: Mycoplasma Bacteria; Adult onset Still's Disease (AOSD); ESR SED Rate and C-reactive protein blood-work. Also ferritan level.
    kanga1427 3 Replies
    • October 23, 2007
    • 05:52 AM
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  • I actually had extensive blood work done and my SED rate was fine. the only thing that came back abnormal was the "titer" and my doctor said that was not horribly off just not where it should be. One other thing I did forget to mention was the sores in my mouth nose and scalp. mostly my nose. The one thing though that is really taking it's toll on me if the days I am just so fatigued, and though I really want to do things and get things done, what little I do just wipes me out. The joint pain has become something I just deal with, but it would be nice to have a day without pain:).
    nysblondie 2 Replies
    • October 26, 2007
    • 01:11 PM
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  • Hi. We really do share some of the same symptoms. I also get sores in my mouth, nose and scalp. The blood work for the SED rate is commonly taken, but it took years of tests before a doctor ever checked my bloodwork for the mycoplasma bacteria, ferritan levels, and C-reactive protein ELISHA tests. These are not commonly run tests, and like Keira mentioned about it taking years before finally getting a diagnosis, it is because so many doctors are not knowledgeable about 'Auto-Immune Diseases'. It takes a lot of research on the patients part unfortunately. One of the main symptoms that I also share with you is the severe chronic 24/7/365 pain throughout my entire body. I first became ill over 10 years ago, and not until I relocated to a different state in order to find better medical attention, I was not given the above tests on my bloodwork. I thought I had been tested for everything possible. It was 3 years ago before I found out about having mycoplasma bacteria and I have been on antibiotic therapy daily ever since. It is difficult to get an accurate diagnosis, as the bacteria mutates and behaves like other cell structures, and it causes you to have a lot of inflammation in your body. Do you have alternating sweats and chills, especially at night? I do have auto-immune diseases/disorders. There can be more than one type, which makes it even more difficult to get a diagnosis and it is also difficult being treated. Sometimes, as in my case and other people that I now know, the treatments can cause other serious permanent health problems. One of the most used treatments is prednisone, and it has caused 'avascular necrosis' in both hip joints, to where I need the joints replaced. I have also developed serious allergic reactions to some of the other commonly used drugs such as 'Methotrexate' and 'Remicade', causing a problem called 'Stevens-Johnson Syndrome' and 'Mastocytosis'. I really do empathize with those who are seeking diagnosis and treatment in hopes of being cured or at least getting relief from the pain and other symptoms from 'auto-immune problems'. The only thing that has diffentiated me from having 'SLE Lupus' and the diagnosis of 'AOSD Adult onset Still's Disease' has been the blood work on the ANA and RA factor. Otherwise it is so similar in all the symptoms of joint pain, muscle pain, and is also attacking all my major organs, the central nervous system, etc. Auto-Immune diseases are totally life-style changing, and usually doctors don't know much, nor do they give you much of their time to help you understand what is happening. You can also have things like 'Chronic Fatigue Syndrome', and 'Fibromyalgia' along with 'Auto-Immune Diseases/Disorders'. It may be helpful to find a doctor who specializes in those problems and really believes in them to find help. It would not hurt to see an 'Immunologist' since auto-immune diseases are basically an allergic reaction of your immune system to your own body. After being diagnosed over 10 years ago, I am again starting over in being tested. Soon I will be going to an Immunologist at The Cleveland Clinic and a team of other doctors at University of Miami. This has to do with the serious allergic reactions that I have been having to all the normal treatments that are used for auto-immune diseases. I sincerely hope that you find help with your health problems and can be as pain free as possible. It can sure make life miserable. Take care. Kanga
    kanga1427 3 Replies
    • October 28, 2007
    • 11:21 PM
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  • Kanga1427, and other thank you so much for your very extensive and detailed information. I do know that my doctor had mentined somethin about "my body attacking itself" and even that it may have something to do with having Rhuematic Fever as a child, so I really do think it is something with the auto-immune and as soon as I can afford to do so I will check into a specialist with this. Again Thank you so much! Kanga1427, What you have said sounds soooo familiar it is errie.
    nysblondie 2 Replies
    • October 29, 2007
    • 00:25 AM
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  • I would suggest trying an alternative approach to treating your symptoms...especially since Western treatments for autoimmune dysfunction are toxic (methotrexate is EXTREMELY toxic) and just not very helpful in many cases. Acupuncture, Chinese herbology, NAET (Nambudripad Allergy Elimination Techniques) are just a few that can be very helpful for people with Lupus, CFIDS, Crohns, RA, MS, and many more. Traditional Chinese Medicine looks at the whole body and comes up with a diagnosis that helps the practitioner determine the best treatment. For autoimmune diseases, there can be a pathogen ( for example Kanga's mycoplasma ) that lodges deep in the "energy pathways", and we use acupuncture and Chinese herbs to help expel the pathogen and allow the body to heal. NAET can be helpful as it helps reprogram the brain to no longer signal a hyperimmune response to an allergen. It is a combination of acupressure, kinesiology, TCM, and allopathic medicine. It is fantastic. There are many paths towards healing. IMO, trying a different approach might make a real difference. Best wishesDOM
    acuann 3080 Replies
    • October 29, 2007
    • 03:26 AM
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  • It sounds like lupus to me, but then again, many other things mimic the symptoms of lupus. Don't bother going to a whole bunch of other doctors, go straight to a rheumatologist. Have him/her run blood work on you for autoimmune problems, tell him about lupus, and see what the results are(but be aware that all of your blood work could be negative and you can still have lupus.) Also, ask for a biopsy of your skin sores, that usually gives an answer about what caused them. I know it's hard to take this advice, but don't give up with doctors, there is the perfect one out there that listens and cares. Hang in there!
    papillon22 16 Replies
    • November 10, 2007
    • 00:23 AM
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  • i didn't know i had lupus until my legs were aching really bad and i kept complaing to the drs. after knowing already i had problems with thyroids tey decided to do i lupus check me not knowing what that was it came back high so i had to go to a specialist got recheck and it was high again it attacks my joints i hurt everyday now have to take injections once a week where i do that my self.i don't hurt as much with the meds i take
    Anonymous 42789 Replies
    • November 9, 2008
    • 02:21 AM
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  • If all blood work is negative what is the % of having lupus? and will it eventually be positive? just curious I'm trying to find out whats wrong with me also???? MAE
    mae3057 50 Replies
    • November 19, 2008
    • 11:32 PM
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