[PennyPru]

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

 

[crm1209]

Penny,
I can see why you'd be worried -- I'm frustrated and angry FOR you! Do you think that your ob/gyn (or your gp) might work with you and refer you to a specialist? It sounds like the rheumatologist is going more by the labs rather than your larger clinical picture; some do that. Do you know if he has much experience with SLE? Is he considering any other source of the problems or just telling you he can't help you? Is it possible for you to self-refer to a specialist at UNC-CH (that would mean paying out-of-pocket, I guess) and perhaps that specialist could refer you to where you need to be? I'm not sure if any of these ideas are useful, just brain-storming here, perhaps others who have been in the same boat will have some ideas, too.

Clearly you are having some significant symptoms that are interfering with your ability to function. You did such a nice job laying out the symptoms and their timeline and impact on your life that you might want to take your post (or at least summarize those parts of it you feel are appropriate) with you to the doctor's visits on Monday in the hope that they can get a sense of just how bad this is for you. Of course, there's never a guarantee, but it might be worth a try.

It's really hard to be in such distress and have doctors who not only don't see it, but who seem to think there's nothing REALLY wrong. If they only knew the pain that caused! I hope you'll keep trying until you find the one who listens and wants to help. They're out there, but not always the first ones you come across.

It sounds to me as if you have REAL symptoms -- you're not making this up and don't let them convince you of something that you don't feel is true. Whether it's SLE or not is a different question (and one I surely don't have an answer for), but whatever it is, it's their job to find out.

I'll keep you in my thoughts; please post again to give an update or if you just need someplace to turn. I'm relatively new here, but this forum has given me a great deal of comfort. I'll try to do the same and I"m sure others will pitch in here, too, for you.

I hope you feel better soon,

Renee

 

[Roberta12]

Penny,

I think Renee has given you some very good advice . . . the best advice I can give you is not to give up. You'd be amazed at how many have similar symptoms and have had (or are having) just as difficult a time (including me) getting diagnosed. Just to give you an idea on an ANA - it can fluctuate in a matter of hours. The highest mine has been is 1:320 (speckled).

I read an article not too long ago that said 45% of patients that were eventually diagnosed with a serious autoimmune disease had been labeled "Hypochondriac". Again, your symptoms aren't unusual including the panic attacks and depression. It (the article) also said get a second, third, fourth, opinion - if necessary. I finally typed up my history (for the past twenty years) and all my symptoms, labs, family history and some personal opinions (9 pages total)- then, my GP (who took it and thought it was a good idea) has referred me to a rheumatologist here in town (I've seen one out of town twice . . . it's not working). She said even she knows something is going on and it sounds like Lupus to her . . . so she said even if this rheumy turns me down as a patient (you need a referral . . . they review info . . . and decide whether she'll accept you or not) she'll call if she has to. I'm waiting for the call now.

Just to let you know my MRI, EEG, and CT were "okay" now I'm supposed to be getting a spinal tap . . . we'll see. As for the answer to the antidepressants - that determination will have to be made by you and your physician, but please know that there is nothing wrong with it and it has helped a good many people (including a number on this site).

On the what I hope is an encouraging side . . . if you have to go "toe to toe" with the medical profession to see that you're taken care of . . . so be it! Don't let them intimidate you . . . there are some very good doctors out there and there are some who make you feel as if you're interferring with their golf time . . . call around, check the internet for the Lupus Foundation in your area . . . they're good for giving advice, call your local hospital if they have a physician referral, just keep going.

I was raising two young sons (by myself) when this all started with me . . . they were my strength for just making it to the next day many times . . . as I am sure your daughters are to you. But in finding this site know you're not alone and there are many here to help and support you.

Please Take Care and I hope the best for you . . .

Roberta

 

[halfpintfl]

Hi Penny, I say yes also, keep trying to get a referral to be seen by a
Rheumy. You do not need to have a positive ANA or any of the others to be
diagnosed. For lupus, the bloods are a help to guide the dr. in the right
direction. As for your Fibro, you need to be on a pain med, a sleep med and an
antidepressant. And , like the others said, find a Rheumy somehow, no matter
what you have to do.


Be well and keep posting.

 

[oohloo]

Penny,
I know and understand totally how you feel. I too have had MRI, EEG, 24 hour urine testing, blood work etc...
Yes they all came back ok, except my urine samples recently and they show raised protein and keytones. My rhumie has told me that ive got Fibro and raynauds but not lupus. My GP however thinks i do have Lupus and is going to keep trying to get me sorted with a dx, just my list of symptoms was enough to make him certain. (my rhumie didnt even bother to read my list, he just stuck it in my notes).
More waiting, more tests, also waiting for results of my skin biopsy, which a dermatologist done two weeks ago (little rashes in different places over my body, buning and itchy).
Its so frustrating i know but try to keep your chin up, we are not alone in all this, others too are in our position.
Hope you get the answers you are looking for.
(((HUGS))) for you
Lots of Love
Lou. xxx

 

[PennyPru]

Thank you all, from the bottom of my heart. Your warm words and ideas have helped me get a little clarity and hope in my situation.

My husband is the most supportive wonderful man, but he thinks I've lost my mind (maybe I have ;O). he doesn't think this is SLE, but I can understand his position ... he doesn't WANT this to be something serious, and I guess somehow all this in me is easier to deal with is it is NOT SLE.

We have zippo funds for a specialist opinion out-of-pocket. I've not been able to work since January so finances are rocky right now. (I am a writer.) At your advice, I am going to compile the timeline for my rheumy (who I don't know if he has experience with SLE or not) and my gyno. I will also share it with my neurologist in 2 weeks. Good idea! I don't need a Dx of SLE, I am just concerned that they are not testing the right things: e.g. my spine and my kidney function.

I had a good night's sleep last night... first in a while. I had a warm bath with some Epsom salt and took some calcium and magnesium and tylenol at bedtime and listened to music quietly and nodded off. It was amazing. My Dh said I was in the same position when he left for work this AM as I was when I fell asleep last night!!!! Today I feel better and calmer and my temp is normal.

The children and I are supposed to meet friends at the museum today. It will mean sunscreening up for the drive, but once we are in the building, it shoudl be ok, right? Now, the question is, shoudl we go and let me spend the energy, OR should I stay at home with the curtains drawn and conserve my energy? Also, with sun sensitivity, can a car ride with the windows up hurt someone with sunsensitive SLE? The children deserve a day out (we've been shut in all week) but they also deserve a Mummy who is capable and happy.

Also, for those of you not yet Dxed, have you all done to change your diet? Do you avoid night shades and milk and cheese? Are you taking any supplements? I'm taking calcium, magnesium, fish oil, and Vit C.

Love to you all, and may you all be blessed by kindness today alike you have shown me.
>|< Penny

 

[crm1209]

Penny,
I've not had the problem of photosensitivity, so I might not be the best person to answer your question . BUT, if I was in your situation and felt as sick as you've felt recently, and if I felt better and I WANTED to go to the museum and I wasn't sure if it would send me into another tailspin, I would be VERY, VERY careful about exposing any of my skin to the sun. I'd slather on strong sunscreen, wear long pants, long sleeves, shoes that cover my feet, sunglasses, a hat (maybe over a scarf to protect my neck), and I might even carry an umbrella for going to and from the car. In short, I wouldn't take any risks; it's just not worth it.

I'm so glad to hear you're feeling better. Please be persistent in finding a good doctor. I spent 3 years being sent from one doc to another before anyone even mentioned a rheumatologist. He thought from the first appointment (of course, the symptoms had then been present for a long time, but my blood work was still inconclusive) that I likely had a "connective tissue disease" and after a while narrowed it down to lupus. But that was after I'd been told by some docs that nothing was wrong and by others that something was wrong and they didn't know what. Another doctor told me somthing that was also useful -- if you've been referred to a lot of docs to figure out what's wrong, it's obviously something that's not easy or quick to diagnose. I hate to tell you to be patient, because I know from having been there that one of the scariest things is simply not knowing what's wrong and how serious it might be, but if you're patient and persistent and keep looking for a doc who listens, you'll eventually find an answer.

Good luck and I hope you post again with news after your doctor appointments (or before then if you want to!)

Renee

 

[Roberta12]

Penny,

Just a quick note as to your last post . . . sun protection is very important! To put it in the "proverbial nutshell" I look like I'm headed to Africa when I go out on our atv's with my husband. I've got my SPF fly-fishing shirt, wide brimmed sunscreen hat with the attached neck protection, have put sunscreen under my clothes, and am literally covered everywhere I can be and STILL if I stay out too long . . . ugh, not good.

A good sunscreen is very important and the ones with zinc oxide are good . . . you can check with your local pharmacy as to which ones are the best. Heck, I use Desitin at times, it has more zinc oxide than zinc oxide ointment. Read labels and compare.
There are some sites that have UVB/UVA protective clothing, or do like I do and hit your local sports store.

It's somewhat tough to have to live your life a little (or a lot )

apprehensive of the sun . . . but you can still enjoy being outdoors, you just need to take the proper precautions and learn what your limits are. The sun is the worst trigger for me and for many others too.

So, enjoy when you're able, and hopefully you can get all the advice you need.

Roberta

 

[lucysky]

I just joined today. Here is a little thing that might help even if it just to know someone is thinking of you. I Find old fashioned white zinc on my face stops the sun getting to my skin and makes it less inflamed. I put makeup over it so I dint look like a geisha. From your own account you must protect yourself from the sun. Where possible avoid it during the middle of the day altogether. I know this is hard but it will probably make a difference. I have learned to enjoy going out at dawn & under the stars. You are doing the right thing to reach out to others for help.

 

[keebler]

Hi Lucy,
You have posted on a very old thread. 6/26/06
The person that started this thread hasn't visited the site since 7/20/06.
Lyn