LUPUS? MS?

Hello I've been diagnosed with RA in Dec , on plaquenil which has helped, However in Jan developed some odd sores on scalp, then went away. I ve suffered Bones in Head pain (almsot feels like bruises), put on midrin which masks it. Weird symptoms: over last 7 months. Itchy skin top half weird red dots, neck cracking all the time stiff, fatigue, cannot got out in sun wtihout getting super hot and itchy. Rhem tested me for lupus in dec came up neg. GP sent me to Neurologist who totaly dismissed my symptoms...because I am a fit 44 yr old. Made me feel crazzy although im not. Gave me MRI/MRA which showed multiple foci increased signal activity. MRA showed some aica/pica complexes...i dont know what it means. i'm susepecting I have lupus...any thoughts? Oh ALSO, I often feel like my right arm is being strangled by a tourniqieut ...awful. Doesnt last all day but is frustrating.

[ivgirl]

I have lupus and it took years to get diagnosed.Also on plaquenil.Also weird head pain feels like scalp pain like my hair hurts or something.Itchy skin could mean hep c get tested i was shocked when diagnosed. They then found out I had cryoglobunmia which is associated with both the lupus and the hep. The red dots are from the cryoglob. Your lupus tests can come up neg like mine did for some time but there are compliment tests and criteria to meet in order to be diagnosed it took me three years.Keep a journal and ask for copies of all your tests.I also have right arm pain and for a long time had a stabbing pain under my right shoulder blade that went away when I was put on the plaquenel. Also mri and neurologists that made me feel like I was crazy. I had severe pain in my right arm and wrist that I thought was work related repeatative stress but systemic lupus was the culprit.there are different kinds of lupus.Your dr could be right but ask for the hep c test and the red dots may be nothing but get a second opinion. Good luck to you take care and make sure to go for eye tests the plaquenel is hard on the eyes you should go every six months.

[tacky958]

Thanks so much for replying its comforting to get more info , It tough having all these weird symptoms. I just want to know so I can move on. Its all bizarre... Anyhow hep c wow ...I'd be shocked too. Thats interesting...I will inquire about that. These red dots that come and go are so unusual. Its frustrating how long it takes to get diagnosed for any of these things..Great idea to keep journal. How are you handling it these days? Has the pain eased up a bit? Is plaquenal the only medicine you can take for it?

Ok well thanks again sorry for all the questions.

\

[ivgirl]

no sorry required. Thats what were here for.Plaquenal is the only one for me but I also take sleep meds.There has recently been a new drug for lupus. Your rhuemy can tell you. Just get plenty of rest stay out of the sun and keep track in your journal.Are the red dots in a particular place? Take pics of them for your doc because chances are you wont have them come time for your appointment.Are they raised? Do they itch?What do they say about your arm?Thanks for asking about my pain. It will be okay. I hope you are feeling better soon too. It is difficult to be sick. Take good care and come to the forum when you need too. I may not have all the info but there are experts on here you can ask too, Take care

[tacky958]

Hello again,
Well thank you. The red dots appear on arms , face and chest nowhere else. Its odd because the itch for a short period of time sometimes they look oozing but other times they just are there. When I'm out in the sun even briefly i can feel my skin heating up.When the symptoms first started I kept saying wow that suns hot, it was april and others would say not at all. The head pain started i kept thinking i wacked my head it felt bruised, then the fatigue set in, the arm pain aches here and there. Back in sept when tips of my fingers got red hot and swollen, thats when I was sent to rhemui dr I didnt have all these other symptoms happening. Pretty scarey how quickly its progressing. I've started a journal to keep record of things.. I jsut want to be rest assured by knowing what it is....so i can deal, ...thx again

[ivgirl]

That is the hardest part the not knowing.I think you are photo sensitive which can happen with lupus.The way they diagnosed my skin condition was to take a biopsy from the dermatologist When do you see your doc again? Also I wanted to give you a tip that helped me. Bring a note pad with questions ready for your doc it is so easy to forget.Take care.

[tacky958]

Hi again ivgirl
I cant get to dr till next week Rhemi, and I will bring note book so i can be  not to miss something I want to say/ask and also for my symptoms....Sometimes I get there and I forget to mention things. I definitley want to see dermi dr, my arms and chest are so itchy at times its awful. I have to stay in front of fan to cool then down .  Also I got my lab results from the idiot neuro dr and my b12 and homocysteine levels were off ...b12 low and homo high...do you know if thats related to lupus or ..anyother automimmune?

take care

[ivgirl]

so sorry it has taken me so long to reply.If I dont understand the homocystine levels I can try to look them up for you I know vitamin d has alot to do with the sun hope you are feeling better

[ivgirl]

so sorry it has taken me so long to reply.If I dont understand the homocystine levels I can try to look them up for you I know vitamin d has alot to do with the sun hope you are feeling better  hugs

[tacky958]

Hi ,So I got call from Dermatologist regarding the biopsie results. He was quite suprised..he said the pathology results said I had a rare blister disease but need to go in and reexcistion them to confirm. Its called fascilits pannicultis...never heard of it..theres not a lot on  internet. They need to understand the cause it could be autoimmune related which explains why my RA factor is high, etc etc...So, hopefully I ve finaly caught the tail Ive been chasing for a year....Anyone heard of this...? thx tacku

[ivgirl]

i tried getting some info on the net too not much out there i will keep looking and ask my rheumy when i go and see her take care

[tacky958]

thanks not a whole lot out there...going friday for next biopsy..We will see. I have so many mouth sores not sure if its connected but ouch!

[ivgirl]

i sure hope you get some relief soon i have still not seen my rhuemy bujt i think you need one take care