Hello New Friends,
I am so overwhelmed and frightened, I don't know where to begin. I'll do my best to keep this short. Im 35 yo mother of two little girls.
A year ago I had pleurisy. Shortly after I had white blisters under my tongue and noticed I was running a temp around 99.3. I asked my doc to test me for SLE and ANA came back negative. I was very ill, with memory probs and felt like my brain was shaking in my head when I'd try to sleep. I have had hives on and off for a year and started getting irregular periods and my breasts leak but I have normal prolactin levels. During my pregnancies I had a few black out problems and a large painless nasal cold sore.
In October I got a referral to an endocrinologist, convinced I had an underactive thyroid. Endo saw me and reviewed my labs and put me on thyroid meds. I felt better for a few weeks, then after being at the beach for a week, I got very sick with muscle spasms, and anxiety and depression. Saw a rheumy Nov who ran ANA, came back positive 1:160 in a speckled pattern. Rheumy said it was NOT SLE.
Jan thru May I was blessed with months where I coulld manage, felt ok, but not terrific. Went off thyroid meds b/c it seems that my hypothyroidism was transient. I had become hyperthryoid on very little meds, so my endo stopped me. (I just did thyroid labs this week, but the ones I did last week were normal even though I'm not taking medicine anymore for it (TSH under 2.0).
Now, the past 5 weeks, I've been really ill again. Started after I spent 2 days outdoors, no sunscreen. Got white bumps under my tongue, noticed pins and needles in my hands and feet, and got bizarre violent images popping into my head when grocery shopping. I generally felt unwell. At that time, my daughter had a very nasty stomach virus, that I did not catch, but I wonder if my immune system was activated somehow. Several days later, I had bad migraine that put me in the ER with whopping high blood pressure (240/120). My BP is usually 120/76. They gave me raglan injection and I felt better until one week later ... back in the ER for major panic anxiety attack that lasted from 5 am til 5 pm. I felt like I was losing my mind and was having shooting adrenalin rushes in my back, from my adrenal glands. The pain in my head and upper spine was intense. My head was shaky. Everytime I'd fall asleep, it would come back, surging. They gave me atavan and sent me home.
Next day I saw my rheumy. I told him everytyhing that had transpired the previous couple weeks. He said he had enough info to DX me with fibromyalgia. He referred me to a neurologist to rule out Multiple Sclerosis. He gave me antiiinflammatory and muscle relaxers that seemed to make me worse, so after a week I stopped them and felt a better.
Next several days I was in so much pain in my upper mid back, spine and brain felt like it was on fire. Saw neurologist and she said it wasn't SLE, just fibromyalgia and that lots of people have positive ANA. She did the MRI of cervical spine and brain and all was normal.
Last week my regular MD ran ANA again and now it's NEGATIVE! He says not SLE. He also tested anticardiolipin AB and they were negative. I had a urine test done and it had bilirubin and keytones in it, and trace of white blood cells, NO protein. Doc said I was dehydrated. On and off for months I've had a little swelling on my right ankle. Doc says that everyone gets that if they eat too much salt or get too hot.
I went to the beach last weekend, afterall, FOUR docs said I don't have SLE. I used suncsreen and spent sevearal hours in the sun under an umbrella. Next day, I coulnd't get out of bed, I was so exhausted and the nasty spine pain came back with avengeance. I also got whacked with depression and crazy thoughts. I find when the depression hits I am trying to convince myself that I am going to die. When I don't have the physical pain, I am happy go lucky person who doesn't think about dying. I'm still struggling today.
What on earth do I do? I am so scared. I know SLE is only Dxed by 4% rheumies and that 3% of SLE sufferers have no positive lab tests. What can I do to get my current rheumy to take me seriously? I've read a lot about SLE over the past year and I wonder if I am having Central Nervous System SLE? I called him and told his assistant I wanted pain killers b/c the pain was so bad, and they never called me back. I called them the next day and they said they had done all they could do for me until my appt with him next week.
Please help me come up with a plan. I live in Raleigh, NC and want to try to see a doctor at UNC-CH (teaching hosptial) as I understand there are a few specialists there who might be able to help, but I need a referral from my pathetic doctor, and right now they say I don't need a specialist. It will take me 6 months to get in to see them. I am living in such fog and pain I can barely care for my children, let alone myself. I am trying to sleep and have been staying out of the sun and wearing suncreen and long sleeves when I have to take the children somewhere. What do I do? Normally I am a vibrant happy busy person, but this has stopped me in my tracks.
Thank you so much for caring enough to read all this, when you don't even know me. I am going to see my rheumy and gynocologist on Monday. They gyno b/c last month's period I had very large blood clots after being in the sun for several hours w/o suncreen.
What anti-depressant do you think might help me?
I'm sorry I'm mentally all over the place with this letter.
>|< Penny55
I am so overwhelmed and frightened, I don't know where to begin. I'll do my best to keep this short. Im 35 yo mother of two little girls.
A year ago I had pleurisy. Shortly after I had white blisters under my tongue and noticed I was running a temp around 99.3. I asked my doc to test me for SLE and ANA came back negative. I was very ill, with memory probs and felt like my brain was shaking in my head when I'd try to sleep. I have had hives on and off for a year and started getting irregular periods and my breasts leak but I have normal prolactin levels. During my pregnancies I had a few black out problems and a large painless nasal cold sore.
In October I got a referral to an endocrinologist, convinced I had an underactive thyroid. Endo saw me and reviewed my labs and put me on thyroid meds. I felt better for a few weeks, then after being at the beach for a week, I got very sick with muscle spasms, and anxiety and depression. Saw a rheumy Nov who ran ANA, came back positive 1:160 in a speckled pattern. Rheumy said it was NOT SLE.
Jan thru May I was blessed with months where I coulld manage, felt ok, but not terrific. Went off thyroid meds b/c it seems that my hypothyroidism was transient. I had become hyperthryoid on very little meds, so my endo stopped me. (I just did thyroid labs this week, but the ones I did last week were normal even though I'm not taking medicine anymore for it (TSH under 2.0).
Now, the past 5 weeks, I've been really ill again. Started after I spent 2 days outdoors, no sunscreen. Got white bumps under my tongue, noticed pins and needles in my hands and feet, and got bizarre violent images popping into my head when grocery shopping. I generally felt unwell. At that time, my daughter had a very nasty stomach virus, that I did not catch, but I wonder if my immune system was activated somehow. Several days later, I had bad migraine that put me in the ER with whopping high blood pressure (240/120). My BP is usually 120/76. They gave me raglan injection and I felt better until one week later ... back in the ER for major panic anxiety attack that lasted from 5 am til 5 pm. I felt like I was losing my mind and was having shooting adrenalin rushes in my back, from my adrenal glands. The pain in my head and upper spine was intense. My head was shaky. Everytime I'd fall asleep, it would come back, surging. They gave me atavan and sent me home.
Next day I saw my rheumy. I told him everytyhing that had transpired the previous couple weeks. He said he had enough info to DX me with fibromyalgia. He referred me to a neurologist to rule out Multiple Sclerosis. He gave me antiiinflammatory and muscle relaxers that seemed to make me worse, so after a week I stopped them and felt a better.
Next several days I was in so much pain in my upper mid back, spine and brain felt like it was on fire. Saw neurologist and she said it wasn't SLE, just fibromyalgia and that lots of people have positive ANA. She did the MRI of cervical spine and brain and all was normal.
Last week my regular MD ran ANA again and now it's NEGATIVE! He says not SLE. He also tested anticardiolipin AB and they were negative. I had a urine test done and it had bilirubin and keytones in it, and trace of white blood cells, NO protein. Doc said I was dehydrated. On and off for months I've had a little swelling on my right ankle. Doc says that everyone gets that if they eat too much salt or get too hot.
I went to the beach last weekend, afterall, FOUR docs said I don't have SLE. I used suncsreen and spent sevearal hours in the sun under an umbrella. Next day, I coulnd't get out of bed, I was so exhausted and the nasty spine pain came back with avengeance. I also got whacked with depression and crazy thoughts. I find when the depression hits I am trying to convince myself that I am going to die. When I don't have the physical pain, I am happy go lucky person who doesn't think about dying. I'm still struggling today.
What on earth do I do? I am so scared. I know SLE is only Dxed by 4% rheumies and that 3% of SLE sufferers have no positive lab tests. What can I do to get my current rheumy to take me seriously? I've read a lot about SLE over the past year and I wonder if I am having Central Nervous System SLE? I called him and told his assistant I wanted pain killers b/c the pain was so bad, and they never called me back. I called them the next day and they said they had done all they could do for me until my appt with him next week.
Please help me come up with a plan. I live in Raleigh, NC and want to try to see a doctor at UNC-CH (teaching hosptial) as I understand there are a few specialists there who might be able to help, but I need a referral from my pathetic doctor, and right now they say I don't need a specialist. It will take me 6 months to get in to see them. I am living in such fog and pain I can barely care for my children, let alone myself. I am trying to sleep and have been staying out of the sun and wearing suncreen and long sleeves when I have to take the children somewhere. What do I do? Normally I am a vibrant happy busy person, but this has stopped me in my tracks.
Thank you so much for caring enough to read all this, when you don't even know me. I am going to see my rheumy and gynocologist on Monday. They gyno b/c last month's period I had very large blood clots after being in the sun for several hours w/o suncreen.
What anti-depressant do you think might help me?
I'm sorry I'm mentally all over the place with this letter.
>|< Penny55