At the end of my rope

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Adam DoubleYoo
Regular Member

Date Joined Apr 2011
Total Posts : 65
   Posted 8/1/2011 7:44 AM (GMT -6)   

I have been sick since late December of last year, with something that nobody seems to be able to give me an answer for what it is.
For people that don't know my symptoms:

I started off in late December by just being very physically tired all the time, I never wanted to do anything, my body was just tired and didn't want to move. After a few days my muscles began to ache a lot. Then I started having very bad GI issues, stomach pain and constipation. Followed by horrible anxiety and panic attacks, and depression. Late January I began having headaches every single day, and migraines at least 3 times a week. That then turned into tremors in my hands and feet, but mostly my hands, and it still happens non stop. Well, in about late April, I began getting this weird burning sensation on my cheeks and forehead. My face is red almost every day, and I am almost never in the sun. I get a mild butterfly rash as it's called. I also developed this other rash that is still on my right cheek, its a weird looking rash that looks like it has odd red lines running through parts of it. I'm starting to get one on my left cheek as well, but higher up on my face. I keep getting chronic sinus infections as well. When I get my headaches, I feel like my head is going to explode. I was also diagnosed with mononucleosis at the end of June. I am awaiting blood test results to see how that's going and how my liver is functioning and all of that.

I saw a Gastroenterologist and I had a small bowel follow through performed, a colonoscopy and an endoscopy and it was discovered my stomach lining was very inflamed as well as my terminal ileum. He wanted to call it Crohn's disease but it seemed very odd to him, I guess because some of the inflammation was nonspecific or something like that? So I was a rheumatologist in May, who performed a lot of blood tests, including the Crohn's blood test that my Gastro did before. He tested me for Lyme disease, and a couple other diseases. But the main one we were trying to get tested was for Lupus, because that's what a lot of my symptoms seemed to be pointing towards. Everything came back normal, which to me didn't seem right because I was in a lot of pain and never wanted to leave my house.

Well, last week my mother saw her rheumatologist at the same practice I went to. She had high ANA levels or something like that, and they diagnosed her with Sjogren's Syndrome, and stated that if she did have Lupus, she wasn't having a flare or something so they didn't catch it at the time. The PA I saw there didn't explain any of that to me, but my mom told her doctor all about my symptoms and what I've been going through for the past 7 months, and he said that if she was to test positive for anything that I should call and make another appointment. So I did, and I'm waiting for that this Thursday.

I am now seeing a neurologist who diagnosed me so far with chronic episodic migraines. When he took my blood pressure, he told me my blood pressure was borderline between normal and high, but reaching more towards the high side. This is something that every single doctor has seen and just kind of shook their head like it was nothing, but he told me it was 140/100 or so, and asked me if it was always really high. When I explained everything to him that I just explained above, he prescribed me an every day medication to take for my migraine headaches that is also a medicine for hypertension, Propranolol. He also gave me Sumatriptan to take when my headaches get really bad which is every day. I was told it would be kind of expected to take it a lot the first week or so, but its been over a week and I still find myself needing it. I am supposed to get a phone call about scheduling an MRI, finally, which is something I have been pushing my doctors for but never get.

I started a new job, I've only worked there for a month and a week. I had to get a special pair of glasses for when I'm at the computer because of my migraines because I work in front of a computer for 8 hours a day, 5 days a week. I've called in twice, and I had to leave early from work one day. I had medical documentation. I'm just nervous I will lose my job. I started the job right after I was officially diagnosed with mononucleosis. Probably not the best decision for other people, but I made sure to not make contact with most people. Mono on top of whatever else was going on and I still pushed through every single day, and I still do but it's already taking a toll on me. And people on the outside looking at me don't usually see how sick I am, or how sick I feel. It's always: "well you don't look sick to me..." or "you look fine!" So when I was at work the other day and vomited I was surprised my supervisor acknowledged the fact that I looked sick.

Has anyone else had a long diagnosis process, or something like this? I just don't even know what to do more than half the time.

Regular Member

Date Joined Aug 2011
Total Posts : 74
   Posted 8/9/2011 8:18 PM (GMT -6)   
I am sorry to hear about the struggle you have had getting diagnosed with something. I had a similar situation and it took six years to get the diagnosis of SLE. Then after I had my son, things went downhill very quickly and it still took 2 years to diagnosis me with fibromyalgia. Luckily, after each diagnosis, I was put on medication that helped with my symptoms and my life is now somewhat normal.

So, keep your head up and know that something is just have to find the right doctor to help you figure it all out. Best of luck! :-)

New Member

Date Joined Jul 2011
Total Posts : 14
   Posted 8/14/2011 6:59 PM (GMT -6)   
HOW can I have Anti DNA- 9 indeterminate and 1:160 speckled and a normal sed rate and CRP?
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