Lupus diagnosed 5yrs ago!

[Ally2010]

I was diagnosed with lupus by my primary care doctor and a rheumatologist 5yrs ago , I had the rheumatologist check my blood work three times! Besides a lot of the symptoms I was having I also had a positive ANA level along with multiple other diseases including many secondary diseases of lupus! I have been diagnosed with fibromyalgia, arthritis, osteoporosis, severe fatigue syndrome, neuropathy in both feet, anemia, raynauds, depression, anxiety, panic attack disorder, scalp/skin lesions, reaction/rash from sun exposure! I haven't seen a rheumatologist and about three years, my primary care doctor requested that I started to see one! So I made an appointment with a rheumatologist at the University of Michigan Hospital in Ann Arbor Michigan, that doctor didn't request do you see any of my previous medical documentation from my previous rheumatologist and primary care doctor, at the time of the visit I had the medical records with me including all lab work done in previous testing! The doctor did his physical exam and stated a couple of different things he visually noticed on my Body that indicated lupus, and ordered a ton of bloodwork, my symptoms were not heard or questioned and dismissed quickly when trying to mention them! 3 days later I was called by a nurse from his office who told me I did not have lupus and I questionably had celiac's disease and was told I no longer needed to follow up with him! So after being in complete shock I requested to see another rheumatologist at Saint Joseph Mercy Hospital in Ypsilanti Michigan, The rheumatologist came in my exam room stated that they use the same laboratory as the University of Michigan and said I did not need to have my blood work redrawn and refused to draw it at my request, and that I did not have lupus, and again dismissed all of my symptoms and after bringing up all of my previous diagnosis she states she did not specialize in those particular fields and I should follow up with the necessary specialists ! I have seen many specialists for a lot of my disorders/ diagnosis, who all said that the majority of my diagnosis were due to lupus! Since my last exam with both the rheumatologist that stated I do not have lupus solely based on just my blood work and was told I don't need to follow up with Rheumatology I have been in total shock and disbelief to the point of constantly cry ! At this time I know longer know what to do anymore I'm at a total loss and feel like I'm fighting another losing battle that's out of my control and feel like giving up completely ! My life has been one mess after another, IV been in total devastation since I was diagnosed with lupus and told to file for disability to turn around and be told I don't have lupus based on only my blood work !

[Paul_Howard Partner LUPUS UK]

Hi Ally2010 ,

I'm sorry to hear that you are having difficulty getting a confirmed diagnosis and understand how frustrating this could be.

Have you considered contacting any local lupus support groups to see if they can recommend a rheumatologist for you to see? You could try The Lupus Michigan Foundation - milupus.org/ or The Lupus Foundation of America - lupus.org/

[Ally2010 in reply to Paul_Howard]

Thanks for your response! I can definitely look into that! However I am following up with a rheumatologist that I seen maybe three years ago who stated that she would not rule out lupus because of all of my symptoms and that my blood work showed another inflammatory blood disease and tried to put me on a medication at that time, I tried the medication, had severe stomach cramping and other issues so I stopped taking it and just never went back. So I called the office and explained what was going on and they requested that I come in to see her again I will be seeing her on 31 July !

[Paul_Howard Partner LUPUS UK in reply to Ally2010]

Good luck with your appointment on Monday. Let us know how you get on.