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purple_butterfly
02-28-2010, 10:40 AM
Hi Group;
I have used this forum in the past, but lost my way for a while. I am more confused than ever now.
I started having my first symptoms in 2000, shortly after the birth of my second child. My initial symptoms were generalized edema and extreme fatigue. I saw every specialist you could imagine and no one could figure out what was wrong with me. In 2004 I moved to a new area and went to see my new primary doctor. I told her about the symptoms I was having and she wanted me to see a rheumy. This was the only specialist I had not seen. I walked into the rheumy's office and her comment was that based on the red rash on my face, she did not even have to question that I had Lupus. She ran a few tests and confirmed the diagnosis with an ANA of 1:40 speckled and elevated ESR. She put me on Plaquenil and I started to feel better but the edema never went away even with diuretics.
In 2006, I delivered my third child after having a miscarriage and losing his twin. About two weeks after delivery I went into a full blown flare with severe joint pain, extreme fatigue, rashes, dry mouth and eyes and the edema. The Plaquenil was increased and I was put on a Medrol Dosepack. That seemed to help with the joint pain but was only temporary. Each time I went into the rheumy's office and told her how lousy I felt, she would shrug her shoulders and tell me she did not know what to do with me. I decided it was time to move on. From a referal from a friend with Lupus I went to see a new rheumy who told me not only do I have Lupus, but I also have Sjogren's Syndrome. He put me on Methotrexate 10mg weekly, Vitamin D and Folic Acid. The problem is that is office is 45 minutes away. I really like him and feel like I matter, but I wanted someone closer to my home in the same hospital network as my primary doctor in the case I am ever hospitalized.
I started having a whole list of new symptoms. On top of the edema and sore, aching joints, I now have intermittent numbness in my arms and legs and difficulty walking and holding onto objects. Sometimes it seems like it takes my brain a few minutes to tell my body what to do. I have urinary incontinence and skin sores that don't want to heal and times when I can't even remember simple things. So, I went to meet my new rheumy and he reviewed my bloodwork and symptoms and said I don't have Lupus or Sjogren's Syndrome. He said the my bloodwork is only slightly positive, that the rash on my face is probably rosacea, the edema is from being overweight and the joint pain and swelling is my brain playing tricks on my body because I was given a diagnosis. He also said that the edema may be caused by my thyroid being out of control, but it is in control and I still have the edema. (I had my thyroid removed when I was 7 due to a tumor).
Needless to say, I was shocked and upset and confused. I was placed on these cytotoxic drugs for no reason. Yet, this new rheumy did not take me off of them!?!?!. I have had a negative Brain MRI, negative doppler of my legs for clots, CT of my abdomen that showed mild Lymph node inflammation and my bloodwork remains negative to slightly positive. I don't know where to go or what to do and am confused about what is going on. I am depressed all the time because I can't function like I used to. My body hurts and I am so tired. I am only 38 and feel like I am 98.
I don't know how much more of this I can take. I have pretty much given up on doctors. I don't trust them. I have a hard time at work, I can't run with my children. I am sick of the pain and have actually though about ending it all. I know I can't give up for my children, but I don't know how to cope with this any more.
I am sorry this note is so long and that I have taken up your valuable time, but I am just so lost. How can I go from no diagnosis to a diagnosis of Lupus, then Lupus and Sjogren' and then back to no diagnosis? I don't know where to turn from here. I am still taking the Plaquenil, Meth, Folic Acid, Vitamin D, Lisinopril and Synthroid.
My husband is scared to death and can't cope with the diagnosis or my symptoms and when I have a really bad day, he gets really upset. My kids are scared to death watching me go through this and my co-workers are baffled. I have tried hard to hide this from everyone, but the pain is so overwhelming sometimes and when my extremities go numb, I walk like I have had a stroke or something.
Please, has anyone ever gone through this or am I truly alone? Because really, I feel like I am all alone in this fight!!!

rob
02-28-2010, 12:47 PM
Hi Purple Butterfly,

Welcome back! You are not alone, not at all. I know that the 45 minute drive to the good rheumo is not very convenient, and your reasoning about keeping the rheumo in the proper network is logical, but good rheumo's are few and far between, and I would consider sticking with the one you like despite the distance. You know, I have been living with SLE since 2004. I got a very definite diagnosis, and was as clear cut a case of SLE as my original rheumo had ever seen. When I went on disability, two more rheumo's confirmed my diagnosis.

I know I have Lupus, because I know myself and my symptoms. I went to a new rheumo about two years ago, and he tried to pull the "undiagnose you" trick on me. I told him I was not there for a damn diagnosis, I already have that. I am there for TREATMENT! He continued to be a condascending idiot, and I made a big scene and stormed out of the office. My mother has SLE, I have joint pain, terrible sun sensitivity, fatigue beyond belief, consistently positive ANA, and just about all of the other more common SLE symptoms including bad brain fog. Since the initial diagnosis I have had no less than 4 rheumo's confirm the diagnosis and now I have some rheumo who knows absolutely nothing about me tell me I don't have Lupus? He even recieved ALL of my past records and still insisted I didn't have Lupus.

Now, I would give anything not to have this crappy disease, but the fact is, I do indeed have it, and I don't need some idiot throwing a wrench into my treatment plan and screwing up my life and my health. You don't need that either. From what you said, it sounds like you met the diagnostic criteria for SLE and was in fact diagnosed by two separate rheumo's with SLE. If you do not have Lupus, then why would you start feeling better on Plaquenil? Plaq is only prescribed for two reasons-to manage SLE, and to prevent/treat Malaria. And since I'm assuming you haven't been camping out in the jungles of Panama lately, we can rule out Malaria.

This sort of thing makes me angry because it's happened to me, and to many other's here as well. These incompetent health care "professionals" don't seem to understand what this sort of thing does to a persons head. To accept a bad diagnosis and learn to live with it only to have some idiot flippantly tell you it's all been for nothing is a good way to push a person into depression, not to mention into a stress induced flare from the disease they claim you do not have. Oh the irony of that!

As far as also having Sjogrens, if that is indeed confirmed, I am sorry. However, having multiple autoimmune disorders is fairly common, and I can tell you from experience that dealing with two is not that much different from dealing with one. I have on top of SLE, MS. I figured when I was diagnosed with MS that it was game over. At that point SLE had beaten me up badly, and now, I have an even more serious autoimmune disorder as well? I was in a very bad state of mind from this new bit of bad news. But that was almost 1 1/2 years ago, and to be honest, I am doing fine with both. Life with two AI disorders really is not much more difficult than life with 1, in my opinion. And to give you even more hope, my mother has both SLE and Sjogrens, and she's still active and happy at the age of 73. She was diagnosed with both nearly 20 years ago.

I know you are overwhelmed, but trust me when I say you can cope with this. It will take time, effort, and understanding from those around you, but things will calm down and get better. As far as that other rheumo, don't let some know nothing put you into a tailspin with an "un-diagnosis" that goes against all of your previous test results, against all of your previous rheumo's opinions, and your own knowledge of your body. Hang in there, and vent whenever you need.

Rob

PS- Don't ever worry about making a long post, sometimes, we just have alot to say!

purple_butterfly
02-28-2010, 02:18 PM
Dear Rob;
Thank you so much for your response. I am sorry for your diagnosis, but it seems that you have learned to cope with it. As you said, you have a clear cut case of Lupus. I can't believe that you would be "undiagnosed" being that you definately have it.
Yes, initially the Plaquenil made me feel a bit better. When the dose was doubled, I felt even better and then when a Medrol Steroid Dosepack was added, I was all better. The steroids only help for about 2 weeks and then I start to ache again. Remembering back, the ache was no where near the pain I have now and was usually brought on by too much sun exposure or stress. The rheumy I initially saw gave me a steroid dosepack once a month, then when I changed to the rheumy 45 min. away, he said he did not want me on steroids any more and prescribed methotrexate and cut the Plaquenil back to 1 pill a day. I started feeling a bit more achy and now I realize that since that third rheumy said that I don't have Lupus, I have felt completely aweful. I hurt so bad that most people would break from the pain. But I can't. I HAVE to work. I HAVE to raise my babies. The Sjogren's diagnosis came from the rheumy 45 min. away and was given as a result of an eye exam I had that showed severely dry eyes and also on the dry mouth and problems with teeth I am having. There was no official test done to diagnose it and when I asked why, he said that there is no need for a test to diagnose a disease that is define based on symptoms. I have never had positive anitbody tests, but was told that does not matter.
I was supposed to return to the rheumy that is 45 min away this past week. I was going to present him with the bloodwork that the doc that said I don't have Lupus did and ask him if I do or do not have Lupus, but we had a pretty bad snowstorm here in Ohio and I had to cancel. Now I can't get in until May. I don't think I can live like this until May!!
Yes, I am really depressed (that is the first time I have admitted that). The worse my emotional state, the worse my body feels and the more pain there is. I know there is something going on with my body and I thought I knew the reason (Lupus & Sjogren's), but now I don't know. Maybe I really am going nuts.

Kim

magistramarla
02-28-2010, 02:48 PM
Hi Kim,
Welcome back to WHL. You are definitely NOT alone in this. Like so many others, I've been through the rheumy run-around also. Many of us know exactly what that is like.
I also have overlapping autoimmune diseases, called Mixed Connective Tissue Disease by one rheumy. Mine are Lupus, RA, Sjogrens and Psoriasis. Like you, I'm taking Plaquenil and MTX and they have helped. I can never take steroids because I also have Avascular Necrosis. Mine didn't come from taking steroids, but many people do get it from taking them. That is why your good rheumy was wary of having you take them. The MTX is called a steroid sparing drug - that's why we're taking it instead.
Your Sjogren's dx sounds much like mine. My ophthalmologist confirmed it when he did the Schirmer's test (the one with the little strips that they place under your eyelids) and the other one that stains your eyeballs interesting colors. He has me using Restasis and lubricating eyedrops. I've also had the severe dental problems for years and didn't know why until now. Most of my teeth are now capped. Lately, I've been doing some reading at a site called Sjogren's World. It's really eye-opening (pardon the sarcasm). Read some of the articles there, and you just might recognize yourself, as I did.
As Rob said, dealing with more than one AI disease isn't any worse than dealing with one. Plaquenil and MTX seem to be the standard treatment for most of them. Hang in there, stick with the decent rheumy and take care of yourself. Come back here to keep us updated and vent all that you need to. We all understand, and we'll be here to listen!
Gentle Hugs,
Marla

rob
02-28-2010, 02:50 PM
Hi

Stress, and sun exposure will give me a flare everytime without fail. I know what you mean about the worse your emotional state, the worse you physically feel. It's fairly common for this to happen. The depression can be from external emotional factors, and it can also be caused by brain chemistry that's off during a flare, or from a combination of both. Add pain and frustration to that, and it's a beast that feeds on itself.

I am obviously not your Dr. and I would never pretend to give true professional advice, so this is simply an idea and a suggestion. I would stick with what you already believe to be true. You have every reason at this point to believe that you have Lupus, and from what you say, I believe that too. Instead of getting caught up in the confusion, frustration, and fear of the unknown that the bad rheumo planted in your mind, go with what you know. You know what your main problem is-Lupus. Knowing your enemy is a whole lot less frightening than stewing and worrying about an as of yet undiagnosed disease that is causing you all manner of painful problems.

Stay with your original diagnosis at this point, and actively pursue a plan of action with the good rheumo. Is it possible to explain to him just how much pain you are in, and see if your appointment can be moved up? Tell them you really need help now, not later. If that can't be done, do you have a G.P. who could possibly prescribe something to ease some of the pain until you can get into see the rheumo?

It's a Dr's job and duty to attend to a sick person who is in pain, and not let people just suffer until the next appointment. I'd be willing to bet if you explained what a negative impact this whole situation is having on every imporant aspect of your life, you could find someone to help you sooner than later.

Anyway, those are some of my ideas. Lets see what suggestions others here may have have for you. I hope we can help you find some answers soon.

Rob

purple_butterfly
03-01-2010, 02:50 AM
Hi Rob & Marla;
First, let me say Thank You!! Thank you for responding to me and confirming that I am not slowly losing my mind. I feel like I am most of the time lately. The recent rheumy has me so upset and confused and doubting that I even know my own body. I know what I feel, and I feel lousy!!
I have been offered pain medications in the past. I was taken off all NSAIDS to protect my kidney. During a nephrology appointment, it was found that my left kidney is polycystic, and I have only had one functioning kidney all my life. The nephrologist did an ultrasound and ran a bunch of other tests and said that my right kidney is functioning just fine, but because of the chances of kidney involvement with Lupus, they want to take every precaution to protect it. I have taken Ultram in the past but it did not seem to work very well. The rheumy that is 45 min away offered narcotics, but I have refused thus far for a number of reasons. First of all, I work night shift three nights a week (12 hour shifts) and there is no way I could function on narcotics. Second, I have three young children and if I take a narcotic pain medication, I am afraid of not being able to get to them if they need me. Third, I am a nurse and I am afraid of becomming addicted and stealing from work. And finally, I feel like if I take the narcotics, the disease wins and I have lost what little control I have left over my body! It may sound irrational to most people, but to me it makes sense!
Marla, I have had those eye tests you are talking about. The slit lamp test and staining. I have also had the peripheral vision scan which shows nothing other than a little bit of peipheral vision loss. THis has been explained as changes related to aging and not any damage to my eye. I will check that web site that you mentioned. I seem to have some of the neurological changes associated with Sjogren's, but I don't have a clear cut case or pattern of symptoms. My symptoms seem to be scattered.
I forgot to mention extreme sensitivity to hot and cold. If I am too hot or too cold, my joints seem to lock up and my body just does not cooperate. This is a problem because I live in Ohio and we have brutally cold winters and hot humid summers. Summer is a bit easier because I can sit in the shade and keep cool in water, but in the winter there does not seem to be anything I can do to help other than hover in front of a space heater and pile layers on. I sleep with an electric blanket, but if it gets too hot, it has the opposite effect and actually makes it worse.
ANother huge problem is lack of sleep. On mornings after I work, I usually get about 4 hours of broken sleep. On nights that I don't work, I am in so much pain that I can't seem to sleep for more than a couple hours at a time. I know this is adding stress to my already stressed body.
I think I will call they rheumy's office today before I go to work and see if I can get in sooner than May 4th.
I will check back and let you know what happens.
Kim

laurid8967
03-01-2010, 04:43 PM
Hi there -
First off, I would like to say welcome back...you are amoung friends here who TRULY understand both the disease of lupus (and other AI diseases0 and the stress and frustration of trying to find the right doctor. As usual, Rob and Marla have given excellent advice, and I couldnt agree more about going BACK to your original rheumy.
I also noticed that the "new" rheumy cut you back to only one plaquenil a day(when 2 were working!!). You will not get the maximum benefit from this drug on only one dose a day...two is usually the theraputic range and can mean the difference between having joint pain, rashes and fatigue. Plaquenil is also proven to help to lessen the progression of the disease and keep it from becoming organ-threatening(all this info is on the stickys on the top of the Lauri Lounge Forum). Why he would leesen the dose of this drug - that is the SAFEST of all the drugs and where you cant take anti-inflammatories..is a mystery to me. I can understand wnating you on less STEROIDS, but plaquenil? Doesnt even make sense....but that shows you what he knows.
Getting the proper amount of rest is SO IMPORTANT with this disease. Maybe you can discuss this with the rheumie when you see him...there are plenty of meds out there that can help without the fear of dependence/addiction.
All in all - I really hope you can see your old rheumie as soon as possible...you are in an active flare it sounds like, and you need to be treated...
Know that we all understand and you can rant anytime!! Im praying you get an appt soon, and that you can put the "opinion" and treatment (or lack thereof) behind you.
Take care and God Bless
Lauri

Angel Oliver
03-01-2010, 04:52 PM
Welcome back and so glad you posted so you know you have many members here to help you.Im sorry you have been through it so much.Thinking of you.

Love
Amanda.xxxx