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View Full Version : Hello, new here and undiagnosed



janiew
08-04-2013, 06:24 PM
Hello all,

I found the forum while doing searches to answer questions. I'm not sure where to begin because my history goes pretty far back.

In my late 20s after my second son was born, I came down with something flu-like and it stayed for a while. My symptoms were widespread pain (little to no joint swelling), chronic fatigue, poor sleep, and restless legs at night. I went to the family doc and he said we eventually find that I have fibromyalgia. Keep in mind this was in 1997.

About the same time, I also had one severe panic attack that involved tunnel vision, faded hearing, and tingling in my fingers. I thought I was dying. I was under a lot of stress in my marriage, at work, and with two babies. Family doc did a CT scan to rule out things and an ultrasound in my left calf where I have swelling from time to time. He said he thought it was anxiety, which I have had plenty of issues with and seems to run in my family.

The pain was hard to deal with and the muscles in my neck and shoulders would seize up. And I had pain pressure points at various places but perhaps not enough for an actual fibromyalgia diagnosis. I also had a skin discoloration on the bridge of my hose which a couple of bumps/pustules which faded over time. It was a light reddish brown color but did not spread to my cheeks. I am a light white person with dark brown hair and green eyes. Also, it did not seem to react to sun.

Most of the pain, restless legs, etc. faded out with no treatment over a couple of years. I have had recurrent fatigue, shoulder and neck pain, and migraines since.

Then last year - January 2012 to be precise, I came down with a rash on the back of my neck and above my hairline. The neck rash faded out over a couple of months but the rash on my scalp turned into lesions that became inflamed and pussy. Then it seemed to go to my ears - outer ears - and can create fluid affects my hearing. It's all itchy and I have OCD which compels me to scratch so I have to be careful. Went to the doc finally in April and she wasn't sure what it was and prescribed a five day prednisone pack, which did not agree with me at all (mentally), and Clobetasol Propionate Shampoo.

It cleared up and then came back. She told me I have exzema, psoriasis, or seborrheic dermatitis and referred me to a dermatologist. In the meantime, I developed joint pain and swelling in my feet, ankles, knees, wrists, and fingers. The dermatologist checked me out and did a biopsy on one of the bumps/pustules/plaques and the result was seborrheic dermatitis. I don't know exactly what the biopsy tested for. I was prescribed Fluocinonide. And the derm didn't comment on the swollen joints and pain.

The joint swelling and pain was bad enough to wake me up at night and was worse in the morning, fading through the day with NSAID. The worst of it was in December 2012 and January 2013 and then in faded it out somewhat.

In late May/early June, my rash got worse on my scalp and in my ears and came back on the neck. Pustules developed and became plaques in both scalp and ears but it's not as bad as some pics on Google pics. I have lost hair in back but not too much. I have major swelling in my wrists and some fingers. Had to get a new wedding ring because I went from size 6 to 9. My fingers look sausage-y and the slightest pressure on my wrists can hurt.

Anyway, I wonder if any of you have had similar symptoms and experiences. And could give advice on how to proceed. I've had other issues to address - developed high blood pressure sometime between November 2012 and May 2013. We've been working on that. And I've been diagnosed by a pdoc with ADHD, tics, OCD and tricky anxiety stuff. So we've been working on that with meds and counseling.

I've considered that my issues might be somatic, but darnit, they are very easy to see. If you've taken the time to read my long post. Thank you. Any advice is appreciated.

Saysusie
08-05-2013, 10:46 AM
Hello and welcome to our family! I am so sorry to hear that you have been suffering so long with no definitive diagnosis. I am sorry to say that your symptoms are so very familiar to many of us living with and auto-immune/connective tissue disease. The lesions, plaques, hair loss etc. are symptoms that many of us have dealt with as some of the many rashes that people with Lupus develop. The inflammation, swelling of joints and so forth are also very familiar to us. If you had been diagnosed with Lupus, I would say that your Lupus is quite active and has been for some time.
Lupus (as with most AI/connective tissue diseases) changes within us. Symptoms come and go, the get better and then they get worse. Some symptoms disappear entirely only to be replaced by brand new symptoms. These diseases are ever-changing.
For many of us, it took months to years to get a definite diagnosis due to the changing nature of these diseases. Also, there are some who have never received a firm diagnosis and are told that they have MCTD (mixed connective tissue disease) or UCTD (Undifferentiated connected tissue disease).
It might be up to you to ask your doctors to start testing you for an auto-immune and/or connective tissue disorder. I always advocate that we must take control of our health care, educate ourselves about our illnesses and our bodies and demand that our doctors run appropriate tests and prescribe appropriate treatments.
While we cannot tell you that you do or do not have these issues, we can only say that the symptoms you describe are found in these types of disorders. I do wish you the very best and I hope that you and your doctors are able to find an answer and a treatment for your issues.

Peace and Blessings
Namaste
Saysusie

janiew
08-05-2013, 05:58 PM
Hello and welcome to our family! I am so sorry to hear that you have been suffering so long with no definitive diagnosis. I am sorry to say that your symptoms are so very familiar to many of us living with and auto-immune/connective tissue disease. The lesions, plaques, hair loss etc. are symptoms that many of us have dealt with as some of the many rashes that people with Lupus develop. The inflammation, swelling of joints and so forth are also very familiar to us. If you had been diagnosed with Lupus, I would say that your Lupus is quite active and has been for some time.
Lupus (as with most AI/connective tissue diseases) changes within us. Symptoms come and go, the get better and then they get worse. Some symptoms disappear entirely only to be replaced by brand new symptoms. These diseases are ever-changing.
For many of us, it took months to years to get a definite diagnosis due to the changing nature of these diseases. Also, there are some who have never received a firm diagnosis and are told that they have MCTD (mixed connective tissue disease) or UCTD (Undifferentiated connected tissue disease).
It might be up to you to ask your doctors to start testing you for an auto-immune and/or connective tissue disorder. I always advocate that we must take control of our health care, educate ourselves about our illnesses and our bodies and demand that our doctors run appropriate tests and prescribe appropriate treatments.
While we cannot tell you that you do or do not have these issues, we can only say that the symptoms you describe are found in these types of disorders. I do wish you the very best and I hope that you and your doctors are able to find an answer and a treatment for your issues.

Peace and Blessings
Namaste
Saysusie

Thank you Saysusie for your response. My family doctor has agreed to test me for auto-immune disorders based on my history and symptoms and I feel very positive because I think diagnosis is the first step to treatment and obviously self acceptance and lifestyle changes. I have been a white-knuckled person throughout my various flares and realize I can't continue at this pace much longer. Feels that way anyway. I have worked the whole time and became an expert consultant in my field. Don't know how it was possible but it was - other than self employment allows scheduling freedom.

I agree that we have to take charge of our health care, etc. So I will be tested this week and gather past medical records from back in the day. Try to make some sense of it. My psychiatrist ran full panel for normal stuff, i.e. cholesterol, liver, kidney, thyroid, diabetes. Then my family doctor ran a panel on my hormones - only interesting thing was somewhat high DHEA based on my age and am not sure how that might correspond, other than my periods and cycle are still like clockwork, and I look like I'm in better shape than I am. Lol... etc.

I've been pretty healthy other than my autoimmune symptoms and my weight/bmi is excellent for a woman my age. Dang. The increase in blood pressure threw all of us and that it corresponded with a major flare, or continuing one.

Thank you again. I will report back with test results. Or perhaps sooner if issues come up.

Leaniebean
08-07-2013, 12:39 PM
I hope your pcp is a good doctor and runs the much needed test they should request an ANA panel first lol and if they do see if you can get a C4/ C3 complement ran as well so you don't have to keep drawing blood from my experience having the two hand in hand will get you a lot further. I wish someone would have told me that this time last year when my symptoms first started. Every other month I have blood work July the ran 26 blood test on me and it required me donating 10 tubes of blood and from all the test they keep running those two and kidney function are the repeat offenders. Even if your pcp doesn't see the point in it, try to have it done and look it up so you will have an understanding of how the results may or may not pertain to your condition. And keep in mind a diagnosis may take years so really the important thing is getting some type of treatment plan together. My pcp and Rheumy got my treatment plan together and it took a year to put a diagnosis on me (8-6-13 just got it yday) the treatment they started me in has helped lower my activity judging by my blood test. Be sure to keep us updated and if you hate having your blood drawn then I HiGHLY recommend you ask them for an Ana panel and C4/C3 complement test to get it out the way that way if they are positive panel and low complement they will get you on at least a mild treatment. I HATE having blood drawn <------ lol can you tell????

janiew
08-08-2013, 10:47 AM
Thanks, Leaniebean,

Totally appreciate that you shared your experience and I will request the C4/C3. Lol, I'm okay with having blood drawn but I'm not fond of it either - one of the few things I'm not phobic about!

Glad you finally got the diagnosis! Unanswered questions addressed.

Leaniebean
08-10-2013, 12:48 PM
Oh YEAH lol

janiew
08-18-2013, 06:47 PM
Hi me again. Not sure where to post. My pcp's nurse called and my RA numbers are high and the rest of my labs were good. This was Friday afternoon in a voicemail. She said they will schedule an appt with a rheumatologist for me on Monday or Tuesday and let me know. I'm like what? Takes time to get an appointment scheduled. What does this mean? I can't sleep.

Creekbank
08-20-2013, 07:31 PM
Hi me again. Not sure where to post. My pcp's nurse called and my RA numbers are high and the rest of my labs were good. This was Friday afternoon in a voicemail. She said they will schedule an appt with a rheumatologist for me on Monday or Tuesday and let me know. I'm like what? Takes time to get an appointment scheduled. What does this mean? I can't sleep.

I also had blood work last week and the same results. RA #'s are high and positive ANA. My family doctor is dismissive of the ANA result, although this is the second time I have received a positive ANA. Looking back over my life, the symptoms have been 1 at a time, really didn't think anything was wrong. Then about a year ago, my symptoms really started coming and they have yet to leave me. I also have not received a diagnosis and can relate to your anxiety about that. You just want to know what's wrong with you. I am in a flare now and it has been the worst one yet. I can't seem to get over it.
I wish you the best of luck with the Rheum. and hope you get relief physically and mentally soon.

Creekbank

janiew
08-21-2013, 06:27 PM
Thanks, CB. You are so right. It's hard to know something's very wrong and have difficulty finding out what it is. I got my labs and the RF was 242 and ANA was negative. White blood cell count was high and there were some interesting things with the red blood cells and monocytes. Rheum called and said the soonest they can get me in is in November. So I called my pcp back and said we need to find an alternative.

In your situation, it seems like the high RF and two positive ANAs should clinch it especially since you are in a flare. I have no clue!

Like you, this is my worst flare and its been going on along time. It starts with skin flare and fatigue, then the joint swelling and pain. The fatigue is the worst. My neck is really bad with strange nerve symptoms. Bleh!

Good luck to you too!

janiew
09-06-2013, 03:21 PM
Update -- a rheumatologist at our state university medical school got back with me and I saw her this week. she received my GP's referral. She ran full panel of labs, ordered xrays of hands, feet, ankles and knees, and gave me a shot of Depo Medrol on Wednesday, which helped a lot.

She called today to say she'd received most of my labs and is pretty certain I have RA. The xrays of my feet show erosions. She is starting me on methotrexate weekly and planquenil daily.

I am still waiting for MRI results - MRI on my cervical and lower spine Tuesday. My GP found an "old" C7 fracture in xrays at her office after I complained about my neck and ordered the MRI. The imaging place neglected to fax the results to my rheum even though I called and requested it on Wednesday. And my GP was faxed the results but has not called me... Not good for my anxiety.

A C7 fracture is one in the lowest vertebrae in the neck. Really? How did this happen. I'm still incredulous. Guess my pain tolerance must be pretty high. Which is ironic when many of us with AI are accused of having a somatic disorder, particularly if we are female.

Glad it's being addressed and guess I need to find an RA forum. :) Thanks, ladies, you've been really nice!!!

SleepyInSeattle
09-06-2013, 06:52 PM
So glad you are making progress!!!! It can be a looooong road, and often diagnosis is not certain anyway. If you have anxiety issues as well, then it's way too easy for doctors to attribute everything to that instead of treating disease. Because, as you know, it's IMPOSSIBLE for anybody with anxiety to have any PHYSICAL problems... (can you see my eyes rolling?).

I have two close family members with OCD - and I gotta say, you sound like you deal with it pretty dang well. It's a tough road, I know. This can't make it any easier - this stuff makes ANYBODY anxious, so give yourself a break. Strength, sister! : - )

I'd strongly urge you to search this forum for the keywords "Plaquenil" and "Methotrexate" - you will find tons of good advice. Both medications have been absolutely LIFE-SAVING for me, but they DO take time to get adjusted to (sometimes a couple of months before side effects go away), and the plaquenil doesn't really take full effect for about 6 months or so. Be patient! Taking daily folic acid can help A LOT with methotrexate side effects, so if you're not doing that, talk to your doc about it. I take my Mtx twice a week instead of once (10mg on Monday nights and 10mg Thursdays) - that works better for me than one dose. And if you can't tolerate the oral form, there's an easy injection that people say is TRULY no big deal to do at home. At this point, my only lasting side effect from either med is that my hair is thinner - but I am willing to put up with that, because I feel about 90+% "normal" now, whereas before treatment I felt about 20-30% of "normal" most of the time. It was MISERABLE.

Anyway - there's lots of good info on here, and we're always here to listen.

Best of luck to you on this journey, and I hope you get relief very soon!!!!!

steve.b
09-08-2013, 09:21 AM
........Glad it's being addressed and guess I need to find an RA forum. :) Thanks, ladies, you've been really nice!!!

remember that this forum is open to people with lupus and friends of people with lupus ....... so you are more than welcome here. btw .... glad you are having progress with sorting things out.

Figster
09-08-2013, 12:41 PM
I have some warnings, make sure you have your liver checked regularly on methotrexate, because it can and will destroy your liver. I'm living proof.

tgal
09-08-2013, 01:41 PM
The above is a true statement about having your liver checked while on MTX. It it is true on most of the meds we take. Many of them can damage our liver so please make sure you are getting your bloodwork done, liver check included, on a regular basis. It usually isn't a problem but if it becomes a problem you want it caught early so the medicines can be stopped

janiew
09-08-2013, 01:41 PM
Thanks, SS!

Lol, oh yes, it's impossible for anybody with anxiety to have physical problems! :)

I will do searches on plaquenil and methotrexate here. My rheum wrote a script for folic acid too so she's on top of it. The dosages are MTX 10 mg one day per week and plaquenil 200mg twice a day. Just started today and I will be patient.

That's wonderful that the combo is helping you so much - 90+% normal would be so wonderful - happy for you! And fingers crossed for me!

Thank you again!

janiew
09-08-2013, 01:42 PM
Thank you, Steve. I should say thank you, gentlemen, too! :) I will stick around.

janiew
09-08-2013, 01:50 PM
Thank you Figster and Tgal. Figster, I'm so sorry about your liver problem. Rheum checked liver last week, GP did earlier and the month, and pdoc did in May. She did tell me no alcohol - I was like no alcohol? - and she said one or two drinks max and very rarely at that. At the next rheum appointment in early October, I will ask her how often she will test.

She also recommended an appointment with the ophthalmologist for a baseline on the eyes re: the plaquenil. So it is scheduled. :p

SleepyInSeattle
09-08-2013, 07:43 PM
Sounds like your doctors are on-the-ball...that's great to hear! : - )

glordan
09-21-2013, 05:05 PM
So sorry that your going through all this stuff i would just stay on all the doctors intil i got my answers!!! but i did want to mention i fractured my back in 3 places and have no idea how it happened , it first happened in early to mid 1990"s , and then it happened again 2 other times same vertebraes ...talk about alot of pain and it still has not gone away..so my question is how cant you no what happened ,,who knows its just crazy!!! i wish i new how it happened so it wouldnt happen again...i get nervous just rolling in my bed !!!Well i hope you feel better real soon......................