very sick, running more tests, more docs to see

Hi everyone,

I am so sorry I have not been posting much for others. I am trying to keep up a bit when I think I can be of help.

For the past few weeks things have been really really bad and I am not well at all. If I hear someone else say well you look fine or you look good, I think I will chase them or meet them in a dark alley. All my diseases are flaring up and once the Porphyria starts up and goes full force after the Fibro hits bad then comes the Lupus, etc. Trying to get one down is like a guessing game as to what will help them all. The pain is too much, losing appetite again, and now they are checking for Celiac, some genetic stuff again, my stomach needs an ultrasound and I have to see a new neurologist. The twiches are back in face and legs and the more frustated I get with them they more they come. ROFL. Anyway my pc is frustrated because she doesn't know what to give me. And the meds that I take knock me out but yet I cannot sleep so back to Ambien to try to sleep but i know the Porphyria will get me from it. And pain, oh yes back full force.

Anyway, will be back when a bit better,
love always,
leta

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sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

leta,

so sorry to hear that all of your 'stuff' is flaring back up in full force. Don't worry about posting here. When you can, just let us know how you are doing. Your first job is to take care of you. Good luck with your balancing act.....so so difficult for you.

xoxo emmie

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_{^{SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy}}

Leta, You're having a tough time! I can't begin to imagine how frustrated you are that you can't get any relief. Do your docs work together and report back to each other? It can be hard to balance all our meds because we have so many docs. I sure do hope you don't have to wait too long to get some answers and to feel better.

Don't worry about the forum. We'll wait to hear from you and I want you to know that we'll be thinking about you.

Pat

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<sub>Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin</sub>

Hi Leta, Sounds like things have been pretty rough. I'm so sorry. Pain and not sleeping is never a good sign. I hope your PC can come up with something that works for you and keeps these awful flares in check. I understand the thing about "well you look good!" I called my brother yesterday and told him I wouldn't be at church last night because I wasn't feeling good. He didn't say anything but I could tell it was like he wanted me to feel quilty because obviously I was faking it . He just said well sure carol whatever! anyway hang in there. try and get some rest and some answers. Post when you can.

 

hugs

carol

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God Bless

Leta, I'm sorry to hear thatn things are so bad for you and that you have to go through so many tests. Take care f yourself and let us know how the tests turn out, only when you are feeling up to it. The most important thing is that you take the time you need to take care of yourself through all of this. Hang in there. ((((Hugs))))

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Wow Leta.. so sorry your dealing with all this. It is sheer misery when we have more than one thing going on. I can never figure out which one of my "issues" are causing the current problem! I know what thats like. And then sure enough med that will help one will hurt another.

Good grief.

So sorry and sending lotsa love and rest your way.

Darlene

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Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Hey everyone,

Well I did manage to get my test results AFTER I called them. I was so frustrated. They say I do not have Celiac Disease but I am probably allergic to wheat or gluten so do not eat it. LOL Lupus labs are normal but that is average for me. I am showing all kinds of symptoms and told I would be like this the rest of my life. Ok, so then I was tested to see if I carry the genetics for iron overload which is the hemochromatosis and I do. I am the carrier but I do not have it. My blood iron is normal but my ferritin's are showing anemia. So another freaking test that I have to have ran every 3 months. I still feel like rap and sick of this the meds help but I hate being doped up because it makes me sleep. Good thing I cleaned and did everything at the beginning of the week!!!!

Hope you all have a good weekend.
Leta

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sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

Hi Leta.  I'm so sorry you're going through this.  Food has always been such a pleasure to me and you not only can't eat, but are in constant pain too.  I hope you're able to get some rest this weekend.  (((hugs)))

Hi Leta,

Does ice cream have wheat in it? :) Bless your heart, I was hoping you'd get some better answers. Take the weekend to pamper yourself and rest. I sure hope you start feelng better real soon.

Pat

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<sub>Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin</sub>

Leta, I hope you begin to feel better soon.  I am not familiar with the porphyria you mention but it is not fair that you have this and lupus.  I want you to know I am praying for you and that you are soon feeling much better.

Hi Leta--
Sorry it's all coming down at once. Must be that time of year. Do you think maybe one of your meds is getting to you? I know that carbohydrates can be hard to metabolize with fatty liver, which makes it kind of like celiac disease, but not exactly. Could you be hypoglycemic? Did they test your insulin levels? That's the only way to tell about that. It goes along with fatty liver, which goes along with porphyria-- see I'm reading! Anyway, metformin is a standard treatment for fatty liver and helps me alot. I'm sorry you are in so much pain. I had some loratabs to get me through. I wish there was something I could do to make you feel better. If the liver is involved in your porphyria,then I would lay off any extra non-necessary meds you might take for a while to see if it helps. Remember getting off that soma really helped me and you said that was one of the baddies. Anyway, my ferritin has been high for years, but they say from my liver bx I don't have hemochromatosis, which I think is bull, because I have high ferritin. If you are anemic, maybe you can get some higher iron food to eat or a light vitamin? Those prenatal vits are really strong and some vits are toxic, processed by the liver. Maybe they can lighten the med load somehow. I try to get pain killers without all the tylenol in them or aspirin. That helps too. I hope you feel better soon and I'm sorry about the new ailment.

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Love, Marji

Hey everyone,

Thank you all for your responses and offers to help tackle the people who say "oh you look good!" LOL. I am sorry so many of you encountering rough times as well. My heart goes out to all of you who have kids or spouse's or others to look after on top of caring for yourselves which is a full-time job in itself. I love the support we give each other and the things we know we can ask with out worries. If anyone is interested I have started a blog on Yahoo 360 where I am trying to give information links. I am also working out a list of all meds that cause sun sensitivity and the chemicals that cause that as well. I do not know whether to start a webpage for that or not. But for now I will be posting it on my blog.

Oh some good news is that I have found a hematologist who will try to treat the Porphyria and Maybe look at the Sjogren's syndrome. He has not had many cases of treating porphyria patients but he has spoken to my primary care doctor, my rheumie whom recommended me to him. I am not able to see him until July 18th but he is familiar with all the chaos it took to get all of my diagnosis taken care of and treated. His nurse said he was willing to take me on as a patient if I could work with him as he is still figuring this out too. Of course, how could i say no? Will keep you posted

I hope you all feel better soon and thanks for the support.

I love you all,
Leta

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sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

Post Edited (Leta) : 6/24/2007 1:24:21 AM (GMT-6)

Leta, bless your heart. I know you're having trouble sleeping because you've been on here in the middle of the night. It seems as though everything has hit you like a freight train - all at once. Well, it's about time you had a little luck. Sounds like the hematologisst is a compassionate doctor who really wants to help you. There really are some of those folks out there.

I'm curious -- why would the hematologist look at your sjogren's and not your rheumy? Just curious.

I hope you get some relief from your pain and that you can get some sleep. I'm sitting up with back pain so bad that I can hardly bear it. Sounds like you're doing the same. I wish I could help you Leta. Just know that hundreds or thousands of miles away from you someone's thinking about you right now and sending you hugs over the airwaves. You aren't logged on right now so I'm hoping you're having sweet dreams.

Love,

Pat

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<sub>Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin</sub>

Hi Patty,

I too am sorry you were up with back pane so late. It seems like it slams us at once. You too are in my thoughts. Even though I don't post alot, I do read up and think about the people here. I hope you feel better soon and have drifted off to sleep. Your are a sweetie and I appreciate your thoughts. I am sending you a big hug.

Leta

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sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

Hi Leta--
I hope you are feeling a little better. Good news in finding a hematologist that knows something about porphyria. I'm not doing so good anymore, I went outside and started opening blinds and then got really itchy all over, bad, bad joint pain and sick to my stomach again. I'm trying to think if this joint pain corresponds. I'm going to see the family doc Monday and see what she says, I really need to see my rheumie and if he can see me, it would be great. I have fibro too and it all is a drag. I will pray that your new doc takes good care of you and you get good treatment. I hope in my rural area that I can get someone to take me seriously. I would definitely read your list of drugs and stuff that trigger porphyria. Does hair dye? I know it causes pigment loss. Anyway, I'm thinking of you and hope you are in a cool dark and quiet and comfortable place and that you get some meds for your pain and can sleep and have some kind of fun. Take care. I'm back in the house. I don't know if you know, but I'm trying to repigment my vitiligo and they want me to get 15 minutes of sun and its impossible, plus the ointments cause you to be more sensitive to the sun. I think maybe it was a bad idea. :) Take care and let us know how you are doing.

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Love, Marji

Leta,

   (((Hugs)))) Bless your heart sweetie! It sounds like you are in an terrible flare from all angles right now. I hope the Hematologist will be a great help with some of your symptoms and bring you some needed relief soon.

   Please hang in there and take care. Like the others said, don't worry about the forum. Just post an update when your able. Rest and take care. You are in my thoughts and prayers. Sorry I haven't been around much lately too.

                                                Love and hugs, Babs

Leta, Babs is right. Don't add to your stress by worrying that you aren't posting here. You're in our thoughts whether or not your in touch with us. We know you'll let us know when you feel better. I hope you have a restfull night tonight. Good luck with your new doctor!

(((((Hugs))))))

Pat

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<sub>Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin</sub>

I hope someone that follows a gluten free diet will post a link for give some details on what foods to eat, how to prepare them and where they are sold. This topic seems to come up alot lately so, I wonder if there is a connection. Tks, you are all in my thoughts and prayers.

                                                                     Babs

Hi mom and Patty, and cured, sorry for any others i may have missed. I am sorry you all having tough times right now. hugs to all. I do know of a website and looking for the 2nd one i have found. I am now trying to figure out how to se it up as a link on this post but don't know how to do it.

www.celiac.com/index.html

I hope this works for you.
Leta

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sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

hey everyone,

Just when I thought I would be making the rebound from this terrible flare, I come down with sinus infection from visiting my uncle in the hospital. So now I am on antibiotics. I am flaring from all areas possible now with this virus/bacterial infection and my body is so tired it cannot sleep. I hope this will clear up soon for me so I can keep moving forward with recovery. I feel like I have been set back further than I was. Oh well, what more can I do? But try to sleep.

Take care,
Leta

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sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

Hi Leta:

I'm sorry to hear about the sinus infection. It seems as if you're not getting the break you so much deserve. I'm sorry that you are feeling so poorly and have to deal with this set back.

Lots of prayers and healing energy heading your way. Hope you start to feel better real quick and can enjoy your upcoming weekend. Take care and get plenty of rest my friend.

Hugs,
Barb

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dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.