View Full Version : From MN questionable diagnosis!

10-15-2011, 10:45 PM
Hi folks, I am just doing my first post on this site. I am on another site every day but came here because my Immunologist told me that "You remind me of a lupus patient, but your DNA is negative". I am in my 60's and had to retired d/t my health. I was a registered nurse and had been having health problems since I was about 20 years old.

Treated like a hypochondriac all my life and felt so sick so much of the time. Managed to finish nurses training, marry and raise 3 kids, work part time, garden, remodel houses, etc. Thought I would die some days but I never did. Diagnosed (finally) in 2003 with sjogrens because of a positive lip biopsy. Really shocked a whole bunch of doctors who had no clue I was that sick even though I kept telling them so.

I have had histoplasmosis(1981) and Mycobacterium kansasii in 2005 and treated with 1 year of 3 different antibiotics daily total of 7-8 antibiotics. Had all my teeth pulled in "spurts" due to so many abscesses. My teeth felt sick and they were. Many infections over the years since around early 1970's and finally was sent to immunologist in 2006. This doc totally changed my life. I was diagnosed with myasthenia gravis, hashimotos and severely low t-cells. My t-cell count was 320 at its lowest.

I receive Privigen 80 grams IV every month for my myasthenia and it does help with my infections some. Started this in 2006 and this next month will be the beginning of my 6th year. I just started plaquenil 3 weeks ago because my sed rate is going up. It has always run between 1-4 and is now up to 18 and I have had a rough summer. My health status had been going down the past year. I have to admit that I feel better since the weather cooled off. The hot weather just tears me up with my whole system.

I also was diagnosed with Bullous pemphigoid in 2002---my first diagnosed AID. I also have been on prednisone 10 mgm every other day for 6 years. I have increased doses during flares but try to keep it at the every other day and 10 mgm or under. My neurologist wants me to keep on it to have a little protection against a myasthenic crisis when I have MG flares. My breathing issues did surface again this summer so up the pred goes again.

I am also a type 2 diabetic and hypothyroid and on levothyroxin. My ANA, SSa, SSb are all positive and I have leucopenia plus have had occasional auditory hallucinations and this summer those showed up again. Also, the usual brain fog stuff that can ruin some otherwise good days---especially cause there isn't much that is good on TV.

I have also had an incidental carcinoid tumor removed during a hysterectomy in 1990. I was very lucky that was found early enough. If it wasn't for poor health I would have no health at all is how I feel sometimes. The good thing about it is that is changes around so much that life is never boring. Then add in my hubbies health issues---he's a celiac sprue and microscopic colitis plus many other things plus a 2009 lung cancer stage 1A who needed only wedge section and no chemo only to have a stroke June 2010 that resulted in intubation for a couple of days due to respiratory arrest. Life is never, ever dull!!!

I am glad to be on this site and will probably do a lot of looking around and reading. I don't really know if the diagnosis of lupus would fit except that I have had about 5-6 out of the 11 symptoms listed. I don't have as many symptoms as far as the aching, etc and that is because of the IVIG I believe. I am so thankful for my ability to do what I can. Hope to visit with you off and on. I am always busy on the other site so I will be back and forth. Thank you all. Sedona

10-16-2011, 02:16 AM
hi sedona,
and welcome to our cyber family.
it is not uncommon for people with lupus to go undiagnosed for many years.
i went about 35.

reading what you have listed, they are all possible side effects from the lupus. eveerybody has a slightly different list of symptoms.

lupus does not have a positive test.....
rather is is diagnosed by the sypmtoms and lack of ability to diagnose something else.

there is actually 63 auto immune disorders, and they appear to many similar symptoms.
sorry i am rambling but unable to think clearly.

10-16-2011, 03:06 AM
Hi, welcome to WHL, welcome to our family. Your life sounds very similar to mine. Major fatigue and pain for the majority of my life. I can remember unbearable pain due to the cold weather when I was only eight. Anyway I'll blog my history later and you can see how similar our lives have been. I often wonder when rheumatologists started to really see Lupus as a disease. Because back in the fifties and sixties, you definitely were called hypochondriac. By the way I'm 63. I'm still working only because I have a desk job - accounting. I can still function, but I'm at the point where I need to stop. But as I'm divorced. - I wasn't superwoman. I have to work for health insurance. Lupus meds, plus my hashimoto's resulting meds cost a lot of money. SO I work.

Well, welcome and know that you are definitely not alone.