Shocked and in Awe at AI World - please help

[Blove]

Hi all!

I'm so sorry for this is gong to be long, I've been stalking this forum since I got a call from a dermatologist at the end of June and I finally feel resolved enough to reach out for help. As I write this I want to cry. I've read so much about the wonderful people on this site who are suffering so much and they have the capacity to still be compassionate for others. God bless you!

Well here it is... I'm a 42 year old female, wife, mother of 2 boys and have a good challenging career. I get regular pedicures, and as anyones knows it is so easy to get a fungus.  Back in April I thought I got a fungus because I had a rash on my toes. I tried several over the counter meds but it kept spreading. I figured I would go to a dermatologist and he'd say here take an antibiotic and be on my way. I was surprised when he said we're gonna need a biopsy, after a couple of weeks he then suggested I get blood work. He never gave me a clue as to what he was looking for. I just assumed he was young and being very thorough, meantime the rash was spreading but it didn't hurt or itch, nothing, it was just visibly annoying. He called me on a Friday night and said Negative ANA, blah blah, Positive SSA, blah blah, Negative SSB, Sjogrens, blah blah, Lupus, blah dry eyes. I thought to myself, what in the world is he talking about... I felt hit by a MAC Truck and couldn't get my mind wrapped around what he was saying. I had to ask him 3 times how to spell Sjogrens. He said I needed to come to his office and pick up the results in person, then make an appointment with a RA.. That's when I started stalking this website and learned allot..

Longest story shorter.. I've always been tired, unable to focus, forgetfull, my eyes burn and my joints ache, my youngest son was born with heart defect, ASD, and had open heart surgery before he was one year old. I chalked everything up to getting older and not eating right no matter how much I tried to lead a healthy life style. So I pushed myself and pushed myself. Back in April I visited my GP and explained I thought I had ADD, I gave him my symptoms and he gave me Adderall. A few weeks later I developed a rash, I don't know at this point whether or not they're related.

Diagnosis from RA #1 - SLE and Sjogrens - although I was ANA negative - not to comfortable with this RA, kinda felt like a drive-thru restaurant diagnosis.

Diagnosis from RA #2 Sjogrens and possibly Vasculitis, she didn't think it was Lupus, so we are having additional blood work done. Liked her however was there 4 hours and 3.5 of those were in the wainting room.

Went to the Opthomologist and was diagnosed with moderate dry eye, so far no dry mouth..

I would love to hear from anyone on what they think. Also does anyone know if Adderall be causing the rash? Should I stop taking it? I don't think I would have the energy to make it through the day if I do. But the rash on my toes is starting to make them ache especially when they get cold, which is often....

Shew, thanks in advance for any information provided!

Sincerely,
Brenda

[iraisin]

Hi there, Brenda.

Yea, it sounds like you should've gotten the license plate for that mac truck and turned'em in! So, so sorry.

I'm sure you'll get a lot of good answers here for you to follow the leads on. Did the pharmacy give you the sheet that describes the medication and adverse side effects descriptions?

Also, I remember someone posting a link a while back (here on the board) of a site that you could put all your medications into and it would describe the adverse reactions that could occur with the mixture of them. Gosh I wish I could remember the name of the post or the poster. I keep thinking it was a hero member or a moderator. Darn brain!

As I'm sure you've read here - the right dr. can make all the difference. Considering they can "make you or break you" with this disease, you keep looking until you've found the "right" one for you. It may be, you can just tell folks what area you are in and someone on here may know a good one in your area - save yourself some time, money and energy.

Welcome to the board, and I pray you get some answers, good treatment, and many happy days regardless of what they finally diagnose you with.  I do believe SSA is less specific and it could very well be you may have two conditions you're looking at - hence the need for that excellent dr.

Also, if you wear crop paints and flip flops your feet are getting quite a bit of sun. I believe there is a rash associated with lupus. Many members here have both lupus and SJS, so they will know a lot more about that than me. They'll be around soon.

take care,
iraisin

[sass]

DRUGS.COM....

[iraisin]

Thank you, Sass 

[irish]

Welcome to this site. I remember how I would "sneak" on this site and read all the posts for many months before I started posting. Glad to have you on boards.

Well, sounds like you got the diagnosis and also sounds like you had a dermatologist who was on the ball. So often people go for years trying to get diagnosed. You weren't even trying and got diagnosed. I swear you are the only one I have heard of this happening to on this site. Maybe somebody else can help me out here.

If you like RA #2 stick with here. It is no fun sitting for hours in the waiting room, but RA are few and far between and when we find a good one it pays to hang onto them. Lupus and Sjogrens are kissing cousins and it is really hard to figure out for sure sometimes what is going on.

It is good that the RA is using her head and thinking of other AID that might be giving you fits. At least you have someone who is on your team. Many of the AID have the same treatments so some confusion over diagnosis isn't usually a big problem. Just ask questions and keep up to date on AID. Do a lot of research and don't always believe everything you read. Some of the information given out is not always accurate.

Know that you are always welcome to come and vent cause there are a whole lot of us who have been there and everyones experience is a little different. You will get a lot of good suggestions and information. Try to get rest and not worry. You have been ill for a while and didn't know it, Now you know it so it is legal to take a nap and be less hard on yourself. Good luck. Irish

[Gayle]

Hi Brenda,

I too was not looking for a diagnosis initially. It came in the form of a mac truck as well. It also took many dr's and actually many years before they figured it out for me, you are doing great having the Derm recognize a bigger problem! If you like RA #2, try to stick it out. You need more information. Did the Dr start you on any meds? You will be fine, you need to stand tall and work to find out what is going on. You can come here, learn sooo much, vent as needed, and be sent many hugs, prayers and laughs. THe people on here are wonderful! Welcome aboard!

Gayle

[Winnie]

I still have my days of shock- yes like a mac truck.  Hi! I also am in my 40s and have two boys.  I suddenly got tired in Jan of 11 and my continuing constipation became unmanagable.  I fired several gastros and the gastro that sent me to the rhuemmy gave me 1)celiac  2)hyperthyroidism 3)scleroderma diagnosis.  Wow!  Pity party!  Now I only have "sicca" and all bloodwork is negative for everything else according to rhuemmy.  I don't have a primary diagnosis yet.  Who knows.  I still follow a gluten free diet because I think there is something about gluten that causes our body to react. 

Hang in there.  I cycle from normal to terribly tired.  My joint pain was mild to begin with but with plaquenil, and dietary cahnges, it is almost gone.  I think my biggest hurdle is mental.  I didn't know how to handle being sick at 40.  It was not fair.  I am better but needed some help along the way.  Take care and don't forget to use the search bar to get some of your questions answered.

Winnie 

[Joe S.]

Welcome Brenda. Here is my standard welcome.

While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.

With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.

[MissyLouWho?]

Hi Brenda and welcome! 

I know the whirlwind feeling you're going through.  I was diagnosed with Sjogren's and systemic lupus just this year.  There are a few points that may help you feel a little more centered and in control. 

1.  The first year is the hardest, often not even that long.  It's imperative that you realize and ACCEPT your 'new normal'.  You need to figure out your limits and not push yourself past them or you will crash.  It will get much easier once your boundaries are clear.

2. Get on Plaquenil.  Once you start the med (can take 3-6 months to work, mine worked in 3 months) your fatigue will lessen considerably or even go away.  So will many of your other symptoms unless you are in a flare.

3. Be in control of your stress and learn to say NO to people.  You need ME time.  And good sleep.  And healthy food.  Yoga or meditation is great.

4. Waiting for your doctor to see you is inconvenient, but it's just one appointment once in a while.  I wait 7-8 hours sometimes for mine and he's almost 2 hours away each direction .  But I think to myself that he is incredibly intelligent, thorough, proactive and listens to me.  One day devoted entirely to him every 3 months or so isn't too bad when I think about it!

Also, do you feel the Adderall is doing anything besides giving you energy?  I mean is it working for the focus issues?  If not, talk to your doc about alternatives.  I know giving up much needed energy is a terrible thing to suggest but the plaquenil will help with that.

Ok, I'm done rambling .

Everything will stabilize soon.  I think it's been about 8 months for me or so.  I've been pretty stable with the occasional flare for a few months now. 

Hope to see you around the boards and feeling better soon!

[iraisin]

Missy, that was no ramble. That was so helpful and informative and real. You're a good helper. As are the rest of all these brilliant responses.

You people ROCK!

[Scottietottie]

Hi Brenda 

Welcome to Sjogren's world.

Sjogren's is an incredibly individual disease and does not have a set progression path. Everybody gets a shock when they get the diagnoses though. It's less bad for someone who has been searching for a label for years - but its still a shock. Just remember that you are exactly the same person that you were the day before you got the label! The label may explain things that you've been feeling for some time - and now you can take measures to ease some symptoms.

I hope you find the site useful.

Take care - Scottie 

[Blove]

Thank you all for your support and replying to my post!

When I seen all the replies my heart swelled and I started crying! My husband who is wonderful is at a loss for words. He doesn't understand because I don't understand, so he doesn't say anything and neither do I. I feel alone..

I'm thrilled and grateful to hear plaquenil will help, quite devastated it can take months though. At least it's something to look forward to.

Yes, RA #2 put my on plaquenil and eye drops. I had already been taking gluclosamine and condritum, fish oil and vitamins. My friend swears by this called Protandim, anyone ever heard of it? Ive been taking it for 3 weeks and I'm not sure if it's really doing anything...I guess since I might be in a flare, depressed and confused it could be and I might feel worse if I wasn't taking it....

The Adderall does help me focus as well as give me energy but now I'm scared to take it, the rash appeared about the same time I started taking the meds. I really didn't get to discuss symptoms with the new RA, we just went over the blood work and biopsy results. I really did like her and thought she was especially keen. I am going back on 8/8/12 and I'm sure after she reviews my blood work we will have a clearer picture of what's going on and set a course of action.

I have to say that I learned so much by reading posts, such as good RA's are hard to find and that you can be diagnosed for more AI's on the way. I also read how people suffer for years looking for a diagnosis. That's just awful...

I feel like I made friends here, thanks so much for that. It's wonderful to know that there is people who understand.. I'm not a big one to share especially with people who wouldn't understand.

Thank God someone created this forum!!

[Blove]

LOL! Must apologize for any confusion You really know I'm a newbie cuz I am calling my doctor's RA's instead of Rheumy's.

[iraisin]

ha ha!

You'll see, sjoggie's have their own brand of typo's and somehow we all understand them! Take it all in context. We give instant forgiveness and we receive it just the same.

No need to apologize. I'm sure you'll have to sort thru mine all too often!

[quietdynamics]

Hello Blove....
Great that you found a Rheumy you trust and we would love to hear the result of your appt on 8/8.  Start a new post on the Discussion Board so more will see it please. Your experience can help others.

I find keeping a very short diary (Word Doc) of symptoms for appt helps Drs. and keeps appt focused...I give Dr. a copy stating pain was here...for this many days or started new med and had this effect, etc.   Just an outline for them to scan.

Protandim ??  Think I would spend that $$ on the boys...chocolate has anti-oxidants...lol
I think I would look up what folks here are using the old work horses, Fish oil, etc... but , first have blood work done to check Vit D3 and B12 to establish a baseline.

Keep us posted ....how old are the boys?  Are you sure it was a Mac or a Tonka Truck