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View Full Version : New here and on pins and needles waiting for a diagnosis



peony
01-05-2007, 07:23 PM
Hello! I'm new to this forum, and new to the idea of lupus. What I am not new to is intermittment periods of feeling completely exhausted, so achy that I can barely walk or get comfortable lying down, terrible insomnia, and skin rashes after being in the sun too long. While I've had the photosensitivity and the periods of insomnia (on and off) for much of my life, the bouts of joint aches and extreme fatigue have only developed in the last 5 years (after having my daughter).

After suffering with these bouts for several years, as they got worse and worse, I finally decided to bring it up with my GP early last summer -- but unfortunately I was not in the middle of a flare-up of symptoms. (My mistake, apparently...)

Anyway, I thought I might have some kind of arthritis and was getting concerned about the amount of Ibuprofen I was taking. But she took one look at my joints and said I didn't have arthritis -- and went on to say that she didn't even need to order an xray to be sure. She told me I was tired because I had a 4 year old. She told me my joints hurt because I had bursitis and suggested that I take glucosamine and other "joint juice" products. She told me I could safely take even MORE ibuprofen. And she told me that I needed to exercise more to combat my lessening flexibility. :?

In short, she blew me off.

But she did agree to run some blood tests and although my ANA was just positive (and the RA was neg) -- she stated on the results that were mailed to me that it was "not the cause of my joint pain." (Ok, so what is the cause of it??) I called to speak more about it with her and she never called me back. After that, I decided we needed to part ways.

Earlier this week, after a very stressful evening, I awoke with the worst rash I've ever had, all over my cheeks and bridge of my nose. It burned, sometimes itched and was downright PAINFUL. It was red and puffy and almost purple. I treated it with icepacks it was so hot. So after a day went by with no lessening of the intensity of this ghastly thing, I went to see my new GP (who also has advanced training in dermatology -- a happy coincidence I thought) who diagnosed a malar rash, ruled out rosacea, put me on prednisone, and sent me off to the lab for a rash of blood tests. (I gave her a copy of the weakly positive ANA I'd gotten from my previous doc.)

I know she's running an ANA, a sed rate and a complete blood count with differentials, an RA test, and a bunch of others that I couldn't decode. However, she didn't order a urinalysis and I'm wondering if that was a mistake after reading many of the posts here. She was very clear that she wanted all the blood labs before I started the prednisone, so that nothing would be masked by it -- so wouldn't I have needed a urinalysis before as well?

I'm so worried that I'm going to be told (more or less) that this is all in my head again...also she seems very predisposed to the idea that this was caused by an allergic reaction to something I ate. I really KNOW that it was not an allergic reaction. I've had plenty of them in the past, and they were never like this. In the past when I've reacted to a soap or face cream the rash has always cleared after a night's sleep. And it's never been so bad. And foods that I'm allergic to just make my mouth itch or give me bumps around my mouth.

Sorry if this is a jumble or hard to follow...I'm so spaced out on this prednisone...I feel like I'm in a fog.

If anyone has advice or answers about the urinalysis question and on what a CMP blood test might be, I'd really appreciate it.

Thanks for reading. :)

MARYCAIN
01-05-2007, 07:45 PM
Hi, Peony. A lot of us have had encounters with doctors who were bad, or simply indifferent, so we certainly relate to your frustration with trying to find a doctor to take your symptoms seriously. It sounds like your doctor is doing a pretty thorough workup with the tests she ordered. A CMP is a comprehensive metabolic panel - it is a group of 14 different tests that gives your doctor a lot of information about your liver and kidney function, your blood sugar levels, electrolyte balances, and so on. Since your doctor ordered these tests, a urinalysis is not that important, since these blood tests give information about your kidney function just like a urinalysis would. I hope you will get the results of your tests soon - I know being in limbo is hard.

peony
01-06-2007, 08:44 AM
Thanks so much for the info on the CMP. I feel much better.

I see her again next week so with luck I will know then what my diagnosis is.

Until them I'm trying hard to maintain a wait and see attitude. (Tough at times, but I'm working on it!!)

IloveHistory
01-07-2007, 02:04 PM
Hi!

Welcome to the Forum! :D

I'm sorry to hear that you have been going through such a rough time! Believe me, I understand exactly what you have been going through with regard to incompetent doctors! :wink: :x

I also understand your frustration with the malar rash because I had a similar problem. When I appeared in Hospital for the first time with the malar rash, I had my bloods sent off for an A.N.F. (A.N.A. in the U.S.A.), among many other things, but it came out negative. My Specialist Physician decided that it was therefore not Lupus. However, the rash would not go away and I continued to get sicker and sicker. My Neurologist thought that my Anti-Epileptic Drug was causing the rash, so he spoke to my Specialist Physician and they changed my Anti-Epileptic Drug to Epilim (Depakene in the U.S.A., I think and Convulex in the U.K.). However, the malar rash would not go away and was actually getting worse! My Specialist Physician still maintained that it was the Lamictin (Lamictal in the U.S.A. and U.K.) that was causing my rash. I knew that it wasn't the Lamictin though because everytime this rash appeared, I got extremely ill and would develop terrible bladder and kidney problems; something that the Lamictin could never do. My mother phoned my Neurologist and he said to give it ten days and if the rash hadn't cleared up by then, it was not the Lamictin. Guess what? The rash did not clear up. I FINALLY got an appointment with a Rheumatologist who diagnosed me with Lupus. My Rheumatologist told me that I had one of the best examples of a malar rash that he had ever seen!

It was a really difficult time! :x

It sounds like your new G.P. is doing a MUCH better job than your old one and I hope that you get some results soon! Please let us know how they come out and how you are doing!

Keep well! :)

peony
01-11-2007, 05:37 PM
Well, it looks like I will need to wait longer still. I saw my dr today for a followup and she told me that she was referring me to a rheumatologist. Unfortunately the first available appt he has isn't until early March. :( My ANA came back elevated again -- but that was the only test that came back abmornal.

I read an article today by some big dr (a rheumatologist, I think) at the Cleveland Clinic who argued that many cases of suspected Lupus are actually Fibromyalgia. Especially in cases where the only abnormal lab result is an elevated ANA. I hadn't even thought of Fibro... I think my former GP screened me for that and I didn't react to her poking any of the Fibro tender spots. Also is it common to have a malar rash with Fibro??

As maddening as it is to continue to not really know what (if anything) is wrong with me, at least this new doc didn't write me off as a head case. I have to say that that was my biggest fear after my last encounter with my former GP.

IloveHistory
01-11-2007, 06:19 PM
Hi!

I'm glad that you are getting somewhere with your new G.P. and that she has referred you to a Rheumatologist! :) It is a pity that you have to wait so long though! :( I was aggravated just having to wait a month to see my Rheumatologist for the first time!

A lot of people can have Lupus and Fibromyalgia (I have both). They do share some similar symptoms, such as debilitating fatigue, muscle aches, ligament aches, headaches, irritability, poor circulation, swelling of the hands and feet, forgetfulness, poor concentration, etc. Fibromyalgia can also cause Irritable Bowel Syndrome (I.B.S.) and Irritable Bladder/Overactive Bladder Syndrome.

However, if you did not find the "Fibromyalgia points" painful when they were prodded, it is probably unlikely that you have Fibromyalgia.

I have never heard of someone getting a malar rash with Fibromyalgia though?! :?

I am annoyed about my malar rash at the moment because I went to see my Dermatologist, but I didn't have a full malar rash at the time. However, I did have a rash which looked fairly similar. My Dermatologist took a look and said that my rash was most likely caused by me over-exfoliating my face. She told me to stop everything, except my Acne and Keratosis Pilaris gel, for a week and to see what happens. That was two days ago and my rash has disappeared now. However, this "over-exfoliation" rash came without me being in the sun, which I found unusual at the time, so I don't think that that particular rash is connected with my Lupus. So, I went into the sun for five minutes without sunscreen today, just to see, and the malar rash appeared, as well as a similar rash on my exposed arms! I think that we are dealing with two rashes here which look very similar because I definitely do not exfoliate my arms and over-exfoliation does not make people photosensitive! My Dermatologist told me that she couldn't say anything about the "sun rash" yet (when I saw her two days ago), all that she could tell me was what the current rash on my face was. She told me that if I came out with anything else "interesting", she would very much like to see it.

This is SO annoying! :x

MARYCAIN
01-11-2007, 06:54 PM
Sorry you are having to wait so long for the rheumatologist appointment. unfortunately, rheumatology is one of the smallest subspecialties in medicine, so it can be hard to find one, and new patients often have to wait to get in. I have to drive an hour to see my rheumatologist because his office is two counties away, but he's the closest of my specialty physicians - the others are two hours away in another state.

A positive ANA by itself doesn't mean that you have lupus, because a positive ANA occurs in many people who have other autoimmune diseases like RA, in people who have blood relatives with autoimmune diseases, people with an acute infection or viral disorder like mono, and people taking certain medicines for high nlood pressure or heart disease. Plus about 5% of the population will test positive with no underlying disease at all. So your doctor has to look at your lab tests, and any symptoms you are having, to see if they form a pattern that suggests lupus. Unfortunately, many of the symptoms common to lupus patients - extreme fatigue, low-grade fever, muscle aches, sleep problems - are also common in many other illnesses, so they are not part of the diagnostic criteria for lupus. A malar rash and a positive ANA would satisfy two of the criteria - generally, four are necessary in order to meet the ACR criteria for lupus. So even when you see the rheumatologist, it might take a while to reach a diagnosis. The important thing is your doctor is taking you seriously, and working to find you an answer.

IloveHistory
01-11-2007, 07:09 PM
Hi Marycain!

That's awful that your specialists are so far away! :( Do you have to drive yourself both there and back?

Keep well! :)

MARYCAIN
01-11-2007, 07:39 PM
Ni, I don't drive myself any distances because of my neurological problems - my sister usually drives and goes shopping while I'm at the doctor, and I call her on the cell phone when I'm finished up.

IloveHistory
01-11-2007, 07:49 PM
That's good!

Are there few doctors where you live, or is it just certain specialists?

mnjodette
01-11-2007, 08:00 PM
I'm glad you have family support, Marycain. Two hours!? That's a long way to go for medical care. Does it ever make you nervous being that far from medical help?

I am seeing specialists that are about two and a half hours away, but my regular docs are right in town - just a half hour away for me. Makes me feel lucky!

MARYCAIN
01-11-2007, 08:12 PM
When I say we live in the country, I do mean country! The closest town with a hospital is thirty-five miles away - there is no rheumatologist there. It is also the closest Wal-mart or other large department store. The community closest to us has one stoplight - It's actually closer for me to drive to Nashville, Tennessee than to go to the major teaching hospitals in Kentucky, which are on the other side of the state, a five-hour drive from where we live.

IloveHistory
01-11-2007, 08:16 PM
Oh no! That's awful, Marycain! :( My Rheumatologist is five minutes away, along with my nearest hospital and more than half of my doctors!

Aren't you worried incase you ever need emergency hospital care or an ambulance? I'm worried about you! :cry:

MARYCAIN
01-11-2007, 08:30 PM
My rheumatologist gave me his cell-phone number, so I can call him with any questions or concerns after regular office hours, and I can also e-mail him. And I can have labs drawn at my kids'doctor and faxed to him, so it works out okay. Although I have had a couple of emergency ambulance rides - not a fun experience. Especially on one historic occasion at night, when the ambulance encountered a large deer herd, who paid no attention to lights and sirens and had the road completely blocked. The driver was afraid to get out and try to shoo them off the road, so he kept blowing the horn and trying to inch forward, and we finally ended up completely surrounded by about 20 bucks and does. I had a temp of 105 and was throwing my socks up, but it was so funny that I was laughing too. Especially when the medics radioed in to the hospital that we had been "delayed by deer"! Of course, deer collisions in this part of the country are often fatal, so it might have been tragic instead of funny, but it's one hospital trip I won't forget.

IloveHistory
01-11-2007, 08:41 PM
That's a bit more reassuring, I must say! You had me very worried there, Marycain!

Oh my word! I've never heard of an ambulance being held up by deer before! That must have been really scary, but I can definitely see the funny side! I suppose that one wouldn't know whether to laugh or cry! It could drive someone hysterical, I can imagine! It must have been very frustrating though! :(

How long does it take, on average, to get to the nearest hospital in an ambulance from where you live?

MARYCAIN
01-11-2007, 08:55 PM
It takes an hour to get to the hospital, but there are ambulances stationed at the local fire department, about five miles away, and they are fully staffed by paramedics with medical training, who can start IVs and give meds, and send EKG readings to the hospital over the radio. So they can start treatment right in the ambulance, which makes it much better.

IloveHistory
01-11-2007, 09:02 PM
That's good!

I wanted to ask you a question, if you don't mind. I hope that this doesn't sound stupid, but can you get Arthritis in your back (as in, your spine)?

I have extreme back pain at the moment and my spine is in a terrible spasm. I have a Scoliosis, Spina Bifida and Scheuermann's Disease though, so those might be causing the pain, but this is the worst spasm that I have ever had and my mom told me that my back was extremely stiff when she tried to massage it. :(

MARYCAIN
01-11-2007, 09:35 PM
There are several types of arthritis that affect the spine. Lupus generally tends to affect the peripheral joints (hips, shoulders, knees, elbows, wrists, ankles, fingers, etc.), but it can cause inflammation anywhere. So your pain could be lupus-related, but it's probably impossible to tell without some specialized tests of your spine. Do you have an orthopaedic surgeon for your scoliosis and kyophosis? Are you wearing a brace? If you've grown to where it isn't fitting properly, that could certainly cause a lot of pain and spasms.
Plus, some people with Scheuermann's also have juvenile disc disorder (abnormal degeneration of the discs that seperate and protect the lumbar vertebrae). So this can cause a significant amount of back pain, or weakness or pain radiating down into the leg. Although you are fairly young, your pre-existing medical conditions may put you at higher risk for osteoporosis, so any sudden back pain could also be a vertebral fracture. With your medical history, there are a lot of possible reasons for your pain, so you probably need an MRI of your back just to be safe.

IloveHistory
01-11-2007, 10:11 PM
Hi Marycain!

Thanks very much for your wonderfully detailed advice, as always! :)

Yes, I do have an Orthopaedic Surgeon. The only problem is that he's always so busy! :(

My ex-G.P. never bothered to refer me to anyone, even though she knew that I've always had a Scoliosis, which was getting worse, as I got older. Eventually, my back pain became unbearable and so my mother made an appointment with an Orthopaedic Surgeon, who specialises in spines. Unfortunately, I only got to see him in October last year and there was some reason why I couldn't get a brace at this time. He said that they could fix the problem when I was older, but not now. :(

However, I have a lot of bone problems, so it may be a good idea to go and see a general Orthopaedic Surgeon (the Spinal Surgeon suggested it himself, actually because of my feet; I have completely flat feet and have to wear Orthotics. I also have terrible problems with my ankle bones, which "pop out" all the time. I also have a tilted pelvis, which looks like I have been in a car accident! and my hips dislocate a LOT!); I will speak to my Paediatrician/Paediatric Cardiologist about it.

My mother was pregnant with twins and she lost the one, but I survived. This caused a lot of problems and so I was born with many bone and muscle irregularities, as well as other problems, so I think that I better have this checked out.

There is a lot of Osteoporosis, Rheumatoid Arthritis and Arthritis in my family, making me even more at risk, so thank you for the advice; I will see if I can get an appointment with my Paediatrician/Paediatric Cardiologist today (Friday).

I am worried because I have been in so much pain that I haven't slept the entire night! I also have a fever and an extremely sore throat, so I think that I had better go and see my doctor.

My Gran has the worst Arthritis that I have EVER seen, along with Osteoporosis and Gout and she said that the doctor might release the spasm by injecting Cortisone into my spine, which is what they do for her.

Thanks again, Marycain and keep well! :) I will let you know how it goes!

P.S. I am still waiting for my urine specimen results from my Urologist; he tried to call on Wednesday, but we missed his call and he was operating all day yesterday, so we are hoping that he will call today. I will let you know as soon as we hear!

mnjodette
01-12-2007, 06:42 AM
Marycain, I'm glad to hear you've got emergency medical personnel close to your home. That's got to give you some peace of mind. When my mother-in-law fell in our home and broke her hip, we called 911. We live in a the country...pretty rural...and several of our neighbors are first responders. It was so wonderful to have them come immediately - they were here in 5 minutes. Ambulance took longer, as it had to come from town. But she had some care right away.


Jody

MARYCAIN
01-12-2007, 08:44 AM
It was like that here until a few years ago - the ambulances had to come from the hospital thirty-five miles away, then turn around and go back to the hospital. Then we had a series of bad incidents all in a row - a coal mine explosion, a grain mill accident, a car full of high school kids who played "chicken" with a train and lost - and people got up in arms and started demanding the county do something. After 9/11, the federal government started handing out homeland security grants like candy and our county got one to buy two ambulances, and they use part of the coal severance taxes (the money the coal companies have to pay for using heavy trucks on the road) to maintain them and pay the paramedics. It's still just two ambulances - it won't help much if we have a major disaster like a mine explosion again - but it's definitely better than nothing.

mnjodette
01-12-2007, 09:51 AM
Homeland security grants helped out little township buy some needed equipment for our volunteer fire department, and if I remember right I think that's how we got a few extra first responders trained and outfitted. Even at that, the nearest fire truck is still many miles away and the ambulance has to come from town (about 15 miles away.) But the town in Minnesota that I live near has three hospitals - two of them very large - and lots of auxiliary medical service sites and clinics. It's the third largest medical community in Minnesota (that's pretty large, considering that the other two are the Mayo Clinic and the University of Minnesota Medical Center in Minneapolis.) I'm grateful for the good care here.