View Full Version : Not sure where to start

10-07-2012, 09:47 PM
Hi Whl ~

I was diagnosed with SLE back in May, but I am not ready to trust the dx until I see a rheumy to confirm. I have had AI symptoms for maybe 15 years now... It has been misdiagnosed as CFS and FM, but both of those were thrown out. I have allergies & sensitivities up the wazoo - lol!! ; ) Literally when I was tested - I came up positive for every food and environment allergen they tested me for.

Going gluten and dairy free helped me A LOT... I also cut out alliums, because they're toxic to my system. Those adjustments cleared up all the gut issues I'd had for so long.

I had several years after that where my energy returned and pain and headaches and stiffness were very manageable. I was able to finish college and get an awesome job. Then I got pregnant and had my first child. About a year afterwards I noticed my body and health were going downhill rather quickly. My pain had increased significantly, I injured my shoulder 10 months ago but it won't heal, developed intense leg pain, and I noticed that after I showered or spent time in the sun, my face across my cheeks and nose was blotchy red... Something I try to cover with makeup as best as I can. Oh, and I kept getting bronchitis out of the blue... Like 3 times in about 8 months! Badly. Lastly, my tailbone hurts so badly sometimes I cannot get up from a seated position (hurts like heck!!)

I had a weak positive (but positive) ANA (have had positive ANAs for 11 years), high CRP, high CH50. Oh and I'm positive for the HLA-B27 gene. My Aunt has lupus, and AS runs in my dad's side of the family.

My dr thinks I may actually have 2 conditions... Like SLE and Lyme, or SLE and Ankylosing Spondylitis.

My newest symptom is joints that are stiff and hurt so much it's super difficult to do certain things (like type on my phone, so please excuse any typos?)

My current dr put me on LDN which is mostly helping my leg pain & environmental allergies. I'm not on the full dose yet though... She referred me to the University of Michigan for follow up with an actual rheumy (I've never been to one before!) and my appt is next month!

I'm a stay at home mom of an active 2 year old... Some might think that's easy, but they'd be wrong. My husband is gone about 12-14 hrs a day, so my days are long - and my son has more energy than one hips should ever be blessed with - lol! ; ) It's still exactly where I want to be - but I'm pretty worn out these days.

I think that's about it in a nutshell!! I'm here because I have exactly no one in my life who really understands what I'm living with... I need friends to talk to who can understand and support me. I hate being a burden to my husband or friends... but everyone needs support sometimes. :o)

Many apologies if this is a rather dry introduction! I've been wanting to post for some time but never seem to get the chance. I figured I had just better jump in.

Thanks for having me :o)

PS. What's a rheumatologist appointment like? Is it okay to ask for a general opinion from some of you more knowledgeable folks...? Does this sound like enough symptoms to dx lupus?

10-08-2012, 08:44 AM
First let me welcome you to the WHL family! We are glad to have you! We are really glad that you "jumped in"!

The rhuemy appointments vary from doc to doc. My suggestion is that if you get one of the initial ones that is 10-15 min then find another. It doesn't mean that one that gives you the hour and a half ones is going to be knowledgeable but at least they are thorough. It should last at least an hour because there is a lot to go over. They will check you for fibro (yes, there is a real test for that! I know some doctors just toss the word up there when they can't find anything wrong) while you are in the office, they will check joints and do a lot of talking. After that you will have a TON of blood drawn.

You saw you were diagnosed but won't believe it. Who diagnosed you and how?

10-08-2012, 10:19 AM
Hi Groovygrape,
Welcome to WHL. I'm glad that your doc is on top of this and that he's referring you to a teaching hospital. Many find that they find the better rheumys there.
If you read some of the older threads here, you will find that many of us have more than one AI issue. Luckily, the treatments for many of them tend to be the same. The best thing is to find a rheumy who will look at the overall picture and treat the symptoms.
BTW, there are many of us here who understand what 2 year olds are like. I've raised five, and just became a Grandma again for the fourth time.
When you need friends to vent to, we are always here.

10-08-2012, 03:30 PM
Thank you, Marla and Mari!

Mari - I have been seeing a private physician for the past 11 years. She has suggested, based on my symptoms and positive ana, that I should be monitored for the development of SLE. Fast forward to this year... I saw my regular dr and shared the new and increased symptoms... she ran additional bloodwork (which included the high CH50), and when I followed up - I did so with her PA. Her PA actually diagnosed me. She based it on my self report of the facial redness I develop after showers or sun exposure, the high CH50, positive ANA, and high CRP; as well as the ongoing issues with joint and muscle pain/stiffness, recurrent bronchitis, and leg pain. Oh and headaches and fatigue. She was very nonchalant about the diagnosis, and although she did say "based on x, y, & z, it looks like lupus." It didn't even register that she considered it an actual diagnosis until I saw it on the paperwork when I got home that night. I had heard my regular doctor say it looked like lupus for years, but there wasn't enough to actually call it that.

I say I won't believe it 100% until a confirmation because of the misdiagnoses. I was also told early on that the recurrent sinus infections and bronchitis couldn't be allergy related because I didn't appear to have the right symptoms for allergies at all... and later that year when I was tested - you know the punchline! - I was found allergic to everything. ; ) Drs haven't really given me a lot of faith in them.

Initially, I asked to be referred to a rheumatologist. I felt as though maybe my doctor just didn't have the expertise in this area to feel confident of a diagnosis (although truly, she is a stellar doctor - nationally known in the preventive medicine field... and I do love her!). So I requested the referral. Well, the first place they sent my paperwork to turned me away and told me to go to a pain clinic... so I'm guessing they didn't see enough in the files to call it lupus? It was very strange. Although I will say, rheumys seem to be in very short supply in West Michigan... which is why I'm heading to the U of M Lupus Clinic for an appointment instead. I have heard that another person who was seen there had a short first appt, but was diagnosed with SLE in that period of time (so maybe there was an overabundance of things in his file and easily observed in the physical to point to lupus.)

I got the positive result on the HLA-B27 test after I was dx with SLE. I've wondered about Ankylosing Spondylitis for a few years, since my dad mentioned that both his grandfather and first cousin had it... and he (my dad) was positive for the gene as well... (although I know that can be associated with a handful of other connective tissue disorders.)

I'm so sorry for the long posts!! That's part of the reason I hesitated to post... and called my post "not sure where to start"... because like many of you have experienced, this has been a long, complicated, (often frustrating) road. I feel so much like when I tell me story, it sounds like I'm complaining or that I think any and everything is wrong with me (as in hypochondriac). Does that make sense? Maybe its just because so many people have made me feel that way - mostly doctors - over the years. I was actually heartened that U of M was willing to see me after the refusal from the rheumy practice in Grand Rapids. It made me think that maybe they see something in my records that says they can help... (wishful thinking! ;o)

I just realized my username "groovygrape" fits with the theme of purple being Lupus support! cool! ; ) :cute:

One more thing... my husband has been very, very supportive over the years... but without an actual diagnosis, and with the stress of having a child now... he no longer supports me even a fraction as well as he did at one time. It is most definitely not all about him... some of it is just life weighing down... but he hasn't even learned anything about Lupus because he is wary that the diagnosis will be thrown out too. We've been through this many times before. Anyway, in light of that, I am extra thankful for a new group of understanding friends!! So glad to be welcomed here. :yes:

~ Kristi

10-08-2012, 08:02 PM
Actually sounds to me like your PA has the right idea! Sounds smarter than many of the Rhuemys that I have known and heard of! Too often they want every test to show exactly what they want to see when it doesn't always work out that way. sometimes a diagnosis of Lupus comes from watching someone over time and seeing the symptoms and the tests add up. A good doc knows it when everything falls into place, Lupus isn't always about the test.

As for the misdiagnosis, many of us end up having fibro/CFS and or other AI diseases along with Lupus, as Marla said. It may turn out that that it was a misdiagnosis or it may turn out that it was something you had but they threw it away because they were looking for a single disease instead of multiple. Happens all the time. Good news is that once you get the Lupus diagnosis (or any AI diagnosis) they understand what your body is doing (attacking itself) and they realize that it can do that to any part of your body so they begin to pay closer attention to everything. They actually stop thinking you are crazy!

We are really glad that you are here. Welcome to our family. We are glad to have you!

10-09-2012, 09:28 PM
Thanks again! I forgot to mention that I have had the tender point exam for fibro and didn't have any of the standard spots... I do however have many trigger points that are extremely painful upon very light touch - like on my ribs. I've often wondered if someday they will change the "map" for FMS diagnosis.