Are there really rheumatologist that diagnose on symptoms and a +ANA only?

General
1

Hello,

I will try to be as short as possible, but am very upset/confused. I am a RN with 4 children aged 1-13. I always worked night shift and never used a baby sitter. I never slept and somehow functioned perfectly. I was energetic and bubbly, and to be honest was well liked at work and within my social circle.

I had to quit my job because fatigue came out of nowhere...so I decided to stay home with my 1 and 2 year old and go back to school and finish up with my FNP.

Then 3 weeks later I got what I thought was a very bad flu...fatigue, joint/muscle pain, fever etc. I couldn't recover so my GP did an ANA with a result of 1:80 speckled (same results twice). My hair started falling out, my nails all broke off, I lost all appetite and now weigh 101 at 5'5. My joints hurt like h***, I fall asleep during the day all the time, I have complete apathy, i got a rash on my chin after being in the sun, my WBC were 4.4(which I was told are not low...but are for me...mine have been around 10 since 2007), and I get ulcers in my mouth quite frequently.

My rheumy said I dont meet the criteria due to my more specific labs coming back negative. I feel like I am going insane. I was accepted into the Masters program starting in January and realize that there is no way I can do this now. I was only on bc pills and vitamins for the past 6 years, now: neurontin, tramadol, plaquenil, wellbutrin, bc, melatonin, and today asked for adderall (5mg) so I would stop falling asleep on my children.

I feel like I am dying! I am so emaciated, my hair is so thin and falling out, I walk like an old lady, and I have completely isolated myself from EVERYONE. I dont even know who I am anymore, but I hate who I have become.

I thought I would come on here and spill my guts in the hopes that someone might have advice, or be able to give me another idea of what I may have??? Rheumy says ANA is too low/borderline and all other inflammatory markers/lupus specific tests are negative. GRRR....... I am beginning to feel there is no hope for me!

HELP,

Kimberly

2

Hi Kimberly,

My symptoms started in 1998 and, at that time, I was working as an RN also. I tried for nine years to keep working through the pain and fatigue and then finally just collapsed. I'm on ssdi now and still struggle. But I can tell you that you can get, at least, some improvement. It must be doubly difficult with children to care for.

I went through, literally, dozens of mainstream doctors, well meaning doctors, but no help to me, just wanted to give me drugs. Drugs caused more problems, so I started seeing holistic physicians, integrative doctors who were knowledgeable in autoimmune disease and would treat the "whole" body. That's when I was able to see some improvement. They tested me for things that mainstream doctors didn't and won't. That's what I always suggest to those who are hitting a brick wall when dealing with the mainstream physicians. Until I switched over to the integrative medicine, I was spiraling down and losing my health altogether.

I hope you can find one in your area, if you choose to go that route. I still keep other doctors on board but i won't ever go back to just mainstream medicine.

Take care,

Ally

3

Hi Kimberly,

I don't know if this will help you or not, but I am in a very similar situation. It started with severe pelvic pain, and then I began to feel so tired every day that I could barely get off the couch. Finally I had the issues causing the extreme pain resolved, but I still felt extremely weak, felt like I had the flu all the time, had joint pain, hair loss, vertigo, low blood pressure (for me-90/60), low grade fever, and developed skin discoloration with discoid features on my forehead. I had a false positive Hepatitis C test, and an ANA of 1:40 with a Nucleolar pattern. I went to a Rheumatologist who did further testing which turned up positive for the Anti-Smith and RNP antibodies. I was then put on Plaquenil and then my labs came back normal after several months. It was 'Probable Lupus'. Then I went for a 2nd opinion and now it is 'Probably Not Lupus'; the antibodies are like background noise in my body. I do have Fibromyalgia confirmed by both doctors. I have 'autoimmune tendencies', Raynaud's syndrome, and mild Vasculopathy.

So, now I'm off Plaquenil and taking Wellbutrin, Savella, Neurontin, Clonazepam, and Tylenol 650mg 3x/day. I have a 6 year old and a 2 year old and every day is a challenge due to extreme fatigue, joint pain, and muscle pain that is severe by the end of the day.

I've considered Integrative medicine, but am just so exhausted from all the doctor visits, and don't think I can function off the meds while trying to care for my children. It's good to know that it can work for people though. Thank you Ally.

Anyhow, I feel we are in a gray area. I've come to accept not having a diagnosis and am grateful for not having major organ involvment. Fibromyalgia is seriously life-disrupting and disabling. It's hard to manage it when you have kids and no family in the area to help.

There are other things that could be causing your symptoms, or you could have very mild Lupus that is not yet diagnosable. Doctors don't want to jump into a diagnosis unless you meet all the specific criteria. It's frustrating, but at least you are being treated with Plaquenil which is much milder than other anti-inflammatories or immune suppressors.

I hope you find some relief!

Nicole

4

Ally- I just started looking into other Holistic methods/practitioners available in my area! I would

love to hear more about what you have come across. Being a nurse I feel that healthcare

should involve mind/body/spirit. Not just meds/labs:( I am VERY afraid that I will not be able

to continue with my education to become an FNP as planned....and will I be able to work as

on once graduated??? This terrifies me! My income was a huge help to our family of 6. My

husband is understanding/supportive,,, but this was also when he thought I was returning to

school in January!

Nicole- Thank you also for getting back to me. I have been told that I don't have fibro because

I "failed" my pressure point test. I have generalized pain that jumps around constantly! And

at times is excruciating in my knees, ankle, wrist, and 2 of my fingers. Having children

definitely is a challenge, and I feel even worse for them. The mother they once knew has

completely disappeared :(

I am surprised to hear that there are doctors out there that listen and watch your SYMPTOMS!!!

I HATE being a patient. It was hard enough for me to make an appointment in the first place....I always feel that I can help myself, or don't ever want to be looked at as weak-----NOW,,, I am weak, I can't help myself, and I feel as though I am being looked at as a hypochondriac like many others I have watched doctors label in the past!!! = extremely frustrating!!

I am sending all of you happy/healing hugs your way,

Kimberly

5

Nicole,

I know it can be frightening to change anything in your treatment plan, such as meds. I also have, in the past, gotten just plain burned out with doctor's visits. It consumes your life. When you are ready, you might just want to try an integrative physician. Don't worry, they won't take you off meds cold turkey, but they can treat you in ways that will help support and protect your body while it's being attacked by this autoimmune condition. I've managed to get off all meds. I have both integrative/holistic physician and mainstream docs on my "team" of caregivers, that way I get the benefits of both medical models working for me. Both have something to offer.

Take care,

Ally

6

Kimberly,

It was hard for me, as a nurse, to even conceive of the idea that I could be incapacitated like this. I'm used to someone else being ill and me taking care of them. When my RN license had to go inactive, I just about lost it. I had worked so hard all those years. But no matter what comes into our lives, we have to make something positive come from it, otherwise you'll just have misery.

As far as I have learned from my constant researching of autoimmune, fms, cfs etc that they are all somehow in the same pool. If you know what I mean.

There is a discussion on the fibromyalgia forum that member named Shirley posted titled "CFS" just the other day. It's a video of Dr. Montoya, from Stanford University who reseaches and is speaking about CFS. It's worth a listen, it will help you not feel so battered by all the negativity and doubt that some doctors project onto their patients.

As far as not having fibro because you failed the 11 point test. Those tender points change, come and go and can be different on each doctor visit. Mine do. Some doctor mean well, and I don't mean this in a negative way, but they suffer from knowledge deficit in the area of autoimmune diseases, even the rheumatolgists. There might be one here and there that have educated themselves on it but few and far between.

I wish you all the best and pray that good healing doctors come into your life.

Ally

Kimberly said:

Ally- I just started looking into other Holistic methods/practitioners available in my area! I would

love to hear more about what you have come across. Being a nurse I feel that healthcare

should involve mind/body/spirit. Not just meds/labs:( I am VERY afraid that I will not be able

to continue with my education to become an FNP as planned....and will I be able to work as

on once graduated??? This terrifies me! My income was a huge help to our family of 6. My

husband is understanding/supportive,,, but this was also when he thought I was returning to

school in January!

Nicole- Thank you also for getting back to me. I have been told that I don't have fibro because

I "failed" my pressure point test. I have generalized pain that jumps around constantly! And

at times is excruciating in my knees, ankle, wrist, and 2 of my fingers. Having children

definitely is a challenge, and I feel even worse for them. The mother they once knew has

completely disappeared :(

I am surprised to hear that there are doctors out there that listen and watch your SYMPTOMS!!!

I HATE being a patient. It was hard enough for me to make an appointment in the first place....I always feel that I can help myself, or don't ever want to be looked at as weak-----NOW,,, I am weak, I can't help myself, and I feel as though I am being looked at as a hypochondriac like many others I have watched doctors label in the past!!! = extremely frustrating!!

I am sending all of you happy/healing hugs your way,

Kimberly

7

Kimberly,

I am sorry that you are having such a difficult time of it. I was a Special Education teacher for years working with students with mild to moderate disabilities, raising 3 children and going to college full time as well.

After a back injury in 2001 I felt like my whole body just simply stopped working. I did go back to work for a couple of years between 2005-2008 but then got severe pnuemonia (3 times). During all of this the indicators for Lupus were there...the fatigue, the "lupus fog", the weight loss, etc. However, it was only after a stroke in May and the inability to control my BP that a Nephrologist was called in and a biopsy done on my kidneys. I am already at prevelant stage 4 nephritis. I have a wonderful PCP (internal medicine, sports medicine) who is very good at incorporating diet and other "out of the box" treatments, however it is my Nephrologist that calls me or sees me weekly to make certain that the treatments are working or not in some cases.

I guess what I am getting at is that through this and other discussions I am finding that it doesn't appear to be a certain type of doctor that follows through to find the answer but the doctor him/herself. It is the doctor that isn't happy with just odd blood results (I came back with neg RA and lupus indicators in the blood) but again biopsy proved out entirely different diagnosis. I had protein counts at 13.94 and some other test that should be about 24 that is at 626. Can't find my results at the moment. These were not acceptable to my nephrologist however over the last year I have seen a GI, PCP, Cardiologist, Hemotologist, etc. none of whom followed up.

Keep looking for answers and don't give up. This stupid disease does not affect anyone the same. What may be an indicator for one doesn't show up ever for another. You know your body better than anyone. Fight for answers, I know that is easier said than done when it is a fight to get out of bed.

Good luck and biggest of hugs,

DeAnne

8

Hello Kimberly,

Sorry to all this what your going through and it's such a shame now your having to stop at home...i can't diagnose as i'm not a doctor or specialist but reading what you've put besides other members similar...some rheumo's make me totally angry where the attitude is and it STINKS.

Alot of rheumo's don't like sticking their necks on the line unless the bloods come running in positive, yet they know that Lupus fluctuates the bloods and can also give of false readings, they also know if you meet 4 out of the 11 in the criteria you should be treated for Lupus that's without your bloods showing positive.

This video which is on the site added by jujuleee shows the 11 criteria.

http://youtu.be/iNiXZFmHx-g

With what your suffering and going through i'd definitely look for a 2nd opinion...all my bloods came in positive when i was diagnosed but i had one terrible rheumo who would'nt treat me, kept trying to fob me off and in the end my dermo refered me to another and he's brilliant and told me the truth they can't help me...why on earth did'nt the first one just do this instead of messing about.

My love and thoughts are with you. Terri xxx

9

I would find another rheum. There were years when I did not meet the lab criteria for lupus but clearly I had it. Fatigue, joint paint, kidney issues, etc. I would continue to fight and push your doctor to find an answer. Did they do ds DNA or SED rate? That can also be helpful in the diagnosis.

These are the 11 symptoms to look for in lupus patients and you only have to have 4 to be diagnosed:

Rashes:
butterfly-shaped rash over the cheeks — referred to as malar rash
red rash with raised round or oval patches — known as discoid rash
rash on skin exposed to the sun
Mouth sores: sores in the mouth or nose lasting from a few days to more than a month
Arthritis: tenderness and swelling lasting for a few weeks in two or more joints
Lung or heart inflammation: swelling of the tissue lining the lungs (referred to as pleurisy or pleuritis) or the heart (pericarditis), which can cause chest pain when breathing deeply
Kidney problem: blood or protein in the urine, or tests that suggest poor kidney function
Neurologic problem: seizures, strokes or psychosis (a mental health problem)
Abnormal blood tests:
low blood cell counts: anemia, low white blood cells or low platelets
positive antinuclear antibody: referred to as ANA and present in nearly all patients with lupus
certain antibodies that show an immune system problem: anti-double-strand DNA (called anti-dsDNA), anti-Smith (referred to as anti-Sm) or antiphospholipid antibodies, or a false-positive blood test for syphilis (meaning you do not really have this infection)

So you sound like a classic case. I think that even if you could get predinsone you would benefit a lot. I hope some of this information helps.

10

Omg, so sorry you have too deal with this!! I was very lucky and found a very good rheumy!! But my tests did come back positive tho.

I too work graveyard shift and have for years and have 4 children. In 37 and have always been very healthy and in may out of nowhere I started too feel alot of joint pain. It got too the point where I literally got stuck on my stomach and couldn’t turn over…i thought I was dyeing!!! But the prednisone really saved me!!! Its bad for us but really really it what keeps me moving!!

I wish you the best!!

11

I have hired and fired 2 rheumatologists. I don't like them, personally. I have heard that most rheums are very "lab oriented" and will not diagnose without the abnormal labs. The ones I've seen wouldn't even consider an ANA of 1:80 high enough to do anything with, especially if all other lupus labs were negative. (It's not right, but it seems to be the way they do things).

You are on Plaquenil, so you are being treated for an autoimmune disorder. That is the first drug prescribed by almost every Rheum for an AI disease (they use Plaquenil for RA, Lupus and other AI stuff). How long have you been on Plaquenil? It can take up to 6 months for that to become fully built up and effective. Finding a new rheum/getting another opinion is always an option. I assume your rheum sent you to an opthamologist for an eye exam? It is a must when you take Plaquenil.

I notice in your meds that you listed melatonin. That is a big no-no with lupus.

http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/

Good luck, and don't give up. It can take years to get an "official" diagnosis.