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Catrinky
05-10-2008, 08:26 AM
:? Hi and thank you for the opportunity to introduce myself. I live in the Boston Massachusetts area in the USA. Recently, I've been sick, for the passed 6 months achey joints, and more recently fever headache and sore throat accompanied by a rash all over my body and trouble breathing, constant cough. The coin shaped rash itches at first then kinda burns. Doctors are suspecting Lupus, maybe drug induced. I was diagnosed with MS(r/r) in 1989. MRI show multiple lesions, I am still mobile, but have stopped working due to extreme fatigue, weakness and cognitive issues. I've taken various MS Meds but have had allergic reactions to them.
The drs have stopped the infusion I get every month for fear it may have contributed to my recent health problems. Thank you for access to your chat and message board, I am confused and hoping to get help through your web site.

Saysusie
05-10-2008, 09:09 AM
Hi Catrinky :lol:
Welcome to our family. The lesions you describe do sound like a form of Lupus lesions (there are several that we suffer from). Google "Lupus + Skin" and you will find several sites which explain the different ways that Lupus affects the skin. The fatigue and memory problems are also symptoms of Lupus. The difficult thing about diagnosing Lupus is the fact that it mimmicks so many other diseases, it changes, and it develops slowly.
We are here to help you as you go through the diagnostic process and will try to explain things to you, answer your questions and give you support when you need it.
I'm glad that you joined us and please know that you are not alone :P

Peace and Blessings
Saysusie

sits_inthe_corner
05-10-2008, 09:43 AM
Hello and welcome Catrinky


It's a very friendly and helpful site you've found. Sorry to hear of your pain and fatigue.

What sort of medications are you taking? Sounds like you have an informed doctor. Are they checking you blood work regularly?

Catrinky
05-10-2008, 04:49 PM
:D Thanks for the warm welcomes! I have had blood work done, the ANA came back positive at 1.40 and negative at 1.80 and 1.160 with the pattern speckled. I've looked on the internet to try and figure out what this means I think I understand. The dr said it could be positive because I have MS...and I am showing inflamation in my body..ha ha ya think?
When she saw me she took additional Anti ANA or something test, not really sure the name but she said it would help to identify what is going on between the rash the cough and the fatigue she knows something is up!
In 2003 I had motteled legs or a lacey pattern on my legs, Lupus was suspected then and I had the ANA done I've been told that the level was positive at 1.40 then.
I also am waiting on the results of a biopsy the dermatologist took. The rash was going away while on the Prednizone but now returning....grrrr!
As far as medication, I take pills for HBP, depression, restless legs, stomach problems(hyatial hernia), and for fatigue(provigil and concerta). Fatigue has always been one of my main symptoms for MS. Other than that "I look great" lol! :shock:
Thanks again!!
Peace

sits_inthe_corner
05-10-2008, 05:36 PM
:lol: Catrinky

Sounds like you have good sense of humor on your side! That's GREAT! I'm in diagnosis limbo right now. Long story and doesn't have a happy ending...yet anyway.

I've had a positive ANA test in 2006 and then a boarderline possitive and two negatives. I have the butterfly rash on my face. That sucker landed there when I was 19 ... it fades off but never goes away. Makeup! blend blend blend.

I had a positive malar rash biopsied...thankfully the biopsy took all of the rash. It was just one spot. So far it's not come back.

I have arthritis in most of my joints, and swelling in both my legs and feet. Compression socks help me get through my day as well as tensor velcro knee braces.

We have a gentleman here who has lupus and has recently been diagnosed with MS. I'm sure he'll be along to introduce himself. Seems you two got your stories reversed LOL.

Gentle hugs to you and again welcome.

Pearl
05-11-2008, 06:48 PM
Just wanted to welcome you to the site. I hope you find comfort here.

Jana

DebbieE
05-11-2008, 10:13 PM
Welcome from me as well! So sorry you're having such problems. My husband's aunt had MS and he has a cousin that is now suffering from it as well.

I can totally relate to the molted, lacey legs. It's on my arms and legs but my ANA is only borderline as of January. It's called Livedo vassculitis and usually only effects the skin. It also is almost always associated with only about 3 or 4 auto-immune disorders.

I do hope for you that it is only drug induced and that stopping the drug stops the symptoms. *hugs*

I wanted to add that the other symptoms, including the all over body rash that feels like you're burning from the inside out, I had last week as well. Doc put me on a quick round of prednisone, but now that I'm back down to 10m it's all coming back except the rash hasn't yet. I'm sure you're feeling alot like I am right now. Worried that your entire immune system has now failed you completly and what that will all mean. *hugs again*

rob
05-12-2008, 04:36 AM
Hi Catrinky,

My name is Rob. I'm a 40 y.o. guy from Maine (looks like we're neighbors). I was diagnosed with SLE in 2004. I was diagnosed with MS about a month ago after having constant symptoms that were not typical of systemic lupus. Optic neuritis and pain/numbness/tingling in my right hand and foot. The eye problem is only in the rt. eye. I have a bunch of other weird symptoms that may be a combination of both diseases. I really don't know where one stops and the other begins. I have had IV methylpred. followed by oral and it has not made any difference. I'll be making a decision this week as to what to try next. Ah the joys of overlapping illnesses! Grrr. Anyway, welcome, you'll find some of the nicest people you'll ever meet right here. Solid advice and tons of understanding are common things here. I think this site is also one of the most active ones as well. I always get a very quick reply here. It's good to se you found us.

Rob

Catrinky
05-12-2008, 07:19 AM
:wink: Thanks again for the warm welcomes..this site has already helped me, just knowing you all are here.
I felt lost...and confused. I go to an awesome website called Jooly's Joint a site formed in the UK by a woman(Julie)who has MS. I have many supportive friends there, but none have Lupus and MS. I might suggest trying this site Rob, just like this site, very informative and supportive.
As far as MS medication, I've tried..Avonex(4yrs), Copaxone(3mos.)and Zenapax infusion(1 x a month) 2yrs.
Unfortunately, I am allergic to Avonex(depression/psychological changes) and Copaxone(anaphylactic reaction)and now Zenapax(may be causing Drug induced Lupus).
My symptoms for MS are: complete paralysis on the left side of my head including teeth,tongue and eyes(came back after about 6months) fatigue, cognitive issues, bladder, numbness and weakness in arms, double vision.
I have had optic neuritis in my left eye, which has cleared only leaving scar tissue and some sight issues regarding color.
I have also been on prednizone, last day was yesterday and I am miserable with the itch, keeping me awake. I have a call into the dr to find out what to do, Benadryl doesn't even touch it.. Waaaaaa! :cry:
thanks for being here!!!

sits_inthe_corner
05-12-2008, 01:56 PM
Hey Catrinky

How did you make out with the call to your doctor. Any relief from the itchies insight?

A couple of months ago I was have terrible muscle spazms through the night. The drug they gave me did nothing for the spazms, my doctor said that the pills should at least knock me out so I could sleep. Nuffin notta zip zilch. It was all very frustrating. Eventually it sorted it's self out.

Hope you're feeling better :)

Catrinky
05-12-2008, 06:15 PM
:roll: I am going to see the dermatologist tomorrow instead of thursday. she didn't want to order Prednizone for me until she sees me,
she wants me to take 50mg of benadryl every 4 hrs...been there done that..oh well, I'll be putting socks on my hands again tonight to not ITCH! I will also find out the results of my biopsy....peace

sits_inthe_corner
05-12-2008, 06:45 PM
Catrinky

Where is this rash? is it on your hands?

My hands break out in a hot very itchy rash when I have too much acid in my system like from tomatoes or citrus fruit.

It's like a thousand little water blisters all over palms and in between my fingers. Eventually they dry out and crack and bleed like egsima (sp?).

NoodleMom
05-13-2008, 06:54 AM
Welcome Catrinky
This group of people who I lovingly call my Loopie Family is very caring and supportive.
I have also just began with a very itchy rash. It started on my shoulders and has spread down my back as well as on my chest. The on Sunday I sat on my porch in the shade for ten minutes. Now I have what looks like sunburn all over my arms, chest and face. It does seem to itch but not like on my back thank goodness. I have scratched to bleeding there,

I hope you get some answers at the doc.

K

Catrinky
05-13-2008, 07:25 AM
Hi noodlemom the rash started w/one disk shape lesion on my neck, thigh and upper arms(both)a dr I saw thought it was egzama.I was going on vacation and he said the salt water and 'sun' would clear it..wrong rash exacerbated and spread to my whole body, except lower arms, face and scalp unreal itch! I was on prednizone but now finished rash cleared at 1stnow back, and itchy..seeing dr today ..wish me luck

NoodleMom
05-13-2008, 07:33 AM
will do

Catrinky
05-13-2008, 01:16 PM
:o I do have good news from the dermatologist, biopsy came back eczema....!!! Severe case and she isn't sure why I have it, could be a reaction to the medications I take, like the Zenapax for MS. She wants me to follow up with the Reumatologist(next tuesday) because I have abnormal protein (RA) not sure what that is...she said can be associated with connective tissue disorders. The other blood test I had done, as a follow up for the ANA positive, came back negative, so this is good. Don't worry I am counting my blessings and thanking God for answering my prayers! I have MS and I have accepted the challenges that come with it, I really don't think I could handle the burden of Lupus too. My prayers are with all of you and I will stay in touch through the message board. Please, if anyone has questions about MS I would be more than happy to help!! God Bless and Peace

sits_inthe_corner
05-13-2008, 01:50 PM
Congrats Catrinky

I'm very pleased for you. Hope your health continues on a possitive path.

Catrinky
05-13-2008, 04:55 PM
:? Didn't think I would be posting so soon. My primary care dr called me and left a message, confirming that one of my blood test done showed I had a positive strep infection recently, and that my biopsy came back eczema...she said the eczema can still be related to lupus..now I am really confused..I am calling her tomorrow at 8:15am(she is expecting my call...wats up do ya think??

Saysusie
05-14-2008, 12:53 PM
Excema (Eczema) is a condition caused by an irregular immune system (as is Lupus), there is an excessive reaction by the immune system producing inflamed, irritated and sore skin. Like Lupus, there is no cure for excema, but with medication, it can be managed.
Because both are responses to overactive immune systems, it is not uncommon for people with Lupus to develop excema. However, it is not as common for people with excema to develop Lupus. You are showing positive signs of viral infection (strep) which is usually an instigator of Lupus. You are also showing positive signs of some form of connective tissue disease (protein in urine and positive ANA) which is common with Lupus. So, taking all of these factors together (ANA, protein in urine, viral infection, Excema), your doctors are thinking that it is quite possible that you have a connective tissue disease and that disease might be Lupus.
Have I answered your question? Please let me know if you need anything further!

Peace and Blessings
Saysusie

sits_inthe_corner
05-14-2008, 02:13 PM
Hugssss Catrinky

Welcome aboard the SS Whatheckisgoingon.

It may take quite a while to get the complete picture on whether or not you have lupus.

I'm in a holding pattern because I'm stuck with a stupid rhuemy who doesn't believe in lupus :P yet she's treating me with plaquenil she says for osteo arthritis.

My family doctor is watching my monthly blood work and sweetness cant be bothered.

The thing I keep telling myeslf is, no matter what...I'm still the same person I was before all this started. I've just had to find a few new whys to keep being me.

Maybe the big guy upstairs decided I needed to develop some patient skills. Cause it's being tested lol.

Try not to let this bother you too much. You may not have it, but even if you do knowing is better than not knowing. At least you can take proper steps.

Hugsss we're here for you :)

Catrinky
05-15-2008, 08:03 AM
:) Hi saysuzie and sits and all...thanks so much for your responses. I welcome the information, it has certainly has helped me understand the process of diagnosis. After speaking with my Primary care dr, she is leaning towards lupus, possible drug induced, by the infusion (Zenapax)I get once a month for MS. She believes when I see the Rheum Dr he will get a better picture of my condition now as he didn't really know in March, he felt I had carpel tunnel syndrome(which I do have) and that was causing the weakness and pain in both wrists and all fingers,(but what about my feet lol)
Anyway, since my last visit to him, I developed a fever, headache and sore throat, more of an all over rash due to sun exposure, extreme fatigue, and overall feeling sickly. I have had several blood test, ANA(positive)RNP indicates mixed connective tissue disease, positive strep infection.
I am going to try to organize my thoughts(which is a challenge for me) so when I go to the Rheum Dr I will be able to express to him exactly what has been going on. I had my husband take digital pictues of the rash, because now that I am back on prednizone it will probably be mostly gone by next tuesday..although as soon as I taper the dose it starts to come back. Sorry that I am rambling, I just want to say thank you for taking the time to help me
My heart goes out to all of you and I hope you get some satisfaction Sits real soon! so frustrating for you!
xo