I felt like my social life consisted of going from one doctor to the next doctor. One referral to the next referral.
My rheumatologist loved to say, "You're very difficult. I don't know what to do with you". Well, that didn't make me feel confident.
The migraines were becoming more intense than ever, so my rheumatologist referred me to a wonderful neurologist. He gave me a new set of "cocktails". I had gone over the list of drugs I had used in the past; which was MANY. Within a couple of months, my neurologist performed a MRI. When he got the results back it showed I had 2 brain lesions. He told me it could be one of 2 things: 1) I’m having more TIA’s 2) It’s Lupus. That being said, he referred me back to my rheumatologist for Lupus testing.
So, beginning in August of 2010, my rheumatologist ran the first Lupus test and it came back showing I DO HAVE LUPUS. But, she said the lab made an error. Who am I to argue with a MD? I was asked to come back in 2 weeks and she would re-run the test and send it out again. I did as she asked and we got the same result(s); different numbers, but same results. My C3 & C4 were way out of whack!
This time my rheumatologist, a member of the American Board of Internal Medicine and an MD asked me to find an independent lab to run my Lupus test. I was willing to do this to prove her wrong. How could two tests show the same result(s)? But, how was I going to find an independent lab? Call around; yes! But, I had to make sure the lab didn’t send it to the same place my previous tests went to.
BINGO! I found the lab! The test came back showing all the right criteria-again!!! My rheumatologist was still in denial! Isn’t it the patient who’s supposed to be in denial? Once again, I had faith in her. Back to the drawing board.
By every April, of every year, we had maxed out the individual and family deductible of our insurance. I’m sure that our carrier was about ready to kick us out when they received a claim of mine. The only good thing to this is when you file annual taxes and you itemize.
OK…So, by September of 2010 I’m now told Lupus is ruled out even though I have 3 tests in front of my that show I do in fact have LUPUS!
The migraines are becoming more frequent and debilitating and I must see my neurologist. He runs blood work to make sure everything else is OK.
I have a follow-up appointment to see my neurologist and my blood work is back in. I’m actually curious to see what it show’s, because he also ran a metal test and some other tests that none of my doctors ran before.
Prior to my appointment I had been reading on some RA sites I belong to about protein problems and vitamin deficiency issues. It seems to be a problem with those who have an autoimmune disease.
From being treated poorly, by my rheumatologist I was also learning to become my own advocate. I was learning the hard way, which doctors I could trust that worked for me versus who thought I worked for them.
My neurologist walked into the office and asked me what my eating habits are like and asked me if I’m malnourished. I kind of chuckled and said, “no”. He said my IgA, IgG and IgM came back very deficient. From reading up on this I knew it couldn’t be good. I just didn’t know where a neurologist was going with this and whom I was going to be referred to “next”.
My neurologist made a call to my rheumatologist and asked what she thought of my protein levels, they both agreed I should see a hematologist. Oh great! Well, at least I was seeing a blood doctor; someone who could look at a Lupus blood report and determine if the report was wrong or not. I was going in armed with all of my reports, test, etc….
It wasn’t that easy to get into a hematologist. Apparently a hematologist shares an office with an oncologist. Makes sense, but I didn’t know. I had to wait a few weeks, but that was OK. This had been going on for years and wasn’t going anywhere.
I went to all of my appointments alone and it’s important for me to point this out now; so I can set this up for this appointment.
I’m in the hematologist room, waiting for him to come in. He comes in along with his associate. They both introduce themselves to me, look at my records my neurologist send over, look back at me and say, “I have looked at your records and from the results of your IgA, IgG and IgM, I think you may have Multiple Myeloma and we need to do a bone marrow biopsy”. As soon as I heard him say MM, I honestly felt my body rise above my conscience body and look at all 3 of us from the top of the room. That was a “real” out of body experience if I ever had one! After I felt my body return to me, I said, “WHAT”?
I remember getting back to my car, holding the steering wheel and crying for a bit. I called my best friend and told her what was going on. You’re probably wondering why I didn’t call my “Rock” first??? Well, how do you tell your husband, your soul mate; that you may have bone cancer? Not that it’s easy to tell anyone, but certainly not your husband.
My bone marrow biopsy wasn’t until a few weeks later and I hate waiting. I think it would have been better had they stuck me right then and there. Then I wouldn’t have time to ponder or research it. One bad thing about the internet, you have so many resources at your disposal. For me, I found a bone marrow biopsy on YouTube and I watched it. Big mistake!
Other than the fact that the procedure site was only topically numbed and I could only take a vicodin (I took 1 ½), it wasn’t bad. I told him to make sure he REALLY numbed the area. I think the thing that hurt more was my “Rock” squeezed my hand too tight and I yelled at him.
May 6, 2011 was the MM big day….results were in. But, I brought the Lupus results; all 3 of them too, just in case it wasn’t MM.
I had the best news ever….I didn’t have bone cancer, but the bone marrow biopsy did pick up something, some type of collagen disease. RA is a collagen disease as well as Lupus. See, I was putting my research to good use. No more YouTube videos.
I asked my hematologist to look at my Lupus reports; all 3. He said it looked fishy that all 3 of them said nearly the same thing and said I did need to see a specialist about this.
It just irritates me that doctors are doctor’s advocate versus doctors being patient’s advocates.
I should mention that in the meantime of all of this testing, I was providing my father-in-law with my results. He’s a retired anesthesiologist and has friends in the field that were willing to read my results. One hematologist agreed that it was a collagen disease. OK…now I had two stating it was a collagen disease…We’re getting somewhere.
It’s now early May and my rheumatologist is on maternity leave. Good riddance! I am seeing her associate who has an attitude from kingdom come. But, he’s a Lupus specialist, so I will over come his attitude. He looks at my results and is furious.
In July my neurologist suggested, since I wasn't feeling better, that I under go a spinal tap (lumbar puncture). Most people have bucket lists with 101 things that they want to do before they die. Apparently my bucket list was doing 101 medical procedures before I die and I was racking them up quickly!
The spinal tap was going to be done at the hospital under a fluoroscopic procedure. A radiologist would do this using a guided needle/tap. Hey, how much more could this hurt than the bone marrow biopsy? I was warned/told (however you look at it) that they may need to raise the table to make the spinal fluid drain faster and when doing that I may feel a striking nerve shoot to my toe(s).
To tell you the truth, when you read side affects on medicine, or doctors give you any type of warning, I am the one who gets that affect and it's not a good one.
So of course my spinal fluid wasn't flowing "good enough" and they had to elevate the table. Instantly I felt an electric shock shoot to my left toe. Not once, but 3 times. It's like being zapped by a charger. All in all, it wasn't bad. I was told to lay still after and if I get a migraine to report it right away. Within 5 minutes after being in the recovery room, I get the worst migraine of my life. It literally felt like I had been hit in the back of the head with a 2x4. The nurse asks me if I'm OK. Really? NO! She came back with morphine and it honestly didn't touch the pain.
I was told that once I get home to drink as much caffeine as possible as it replenishes the spinal fluid.
I was bed ridden for the next 6 days with the worst migraine of my life.
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