Some questions and bad office visit

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raven2012
New Member


Date Joined May 2012
Total Posts : 5
   Posted 5/25/2012 11:37 PM (GMT -6)   
I am 28 years old, and have been experiencing joint pain(which later become joint and muscle pain) since I was 17 years old.  I have had a positive ANA over the years, and protein showed up in urine once. I then went through a period of close to ten years with my insurance lapsed, and didn't see anyone. I started going back when I suffered with extreme fatigue, hair loss, mouth sores, extremely high BP, tachycardia, and recurring rashes.
Anyways, skipping ahead, the GP that saw me then said it was lupus, even brought out a medical book to show me the pictures of the rashes. I was on steriods most of the past two summers, shots and orally. I changed GPs once I got insurance as the other doc only sees patients without insurance. They have been ok but keep trying to tell me symptoms are related to anxiety and trying to treat with that. I got in to see a rheumy and he hasn't dx it as lupus but put me on plaquenil and cardiologist took me off anxiety pills saying racing pulse was not from that. I also found out I have Hashimoto's and was started on thyroid hormone last week. Had started seeing Neuro and he ran some tests said nothing showed up, and now dismisses my memory and concentration problems, (telling me flat out I don't have them) because a neuropsych said I passed tests in normal range(even though two showed up in impaired range as I have read report). Have any of you had this type of problem? Have you gotten neuropsych consult or test and was dismissed? The memory problems are worse and come and go, and when I told the neuro that, he said, there is not a condition that would cause that. I even said, maybe it was from my thyroid and he said, you'll still have problems after they sort out your thyroid.?? That it wasn't my thyroid problems. Does brain fog come and go for any of you? The attitude I got was very rude and I felt and feel very horrible, like I'm crazy or he thinks I'm lying. I mean if he doesn't believe me that's fine, but I would have appreciated a little consideration. Do you guys have this kind of thing happen frequently with docs?
Sorry message is so long, but thanks for your help.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/26/2012 1:12 PM (GMT -6)   
hmmm...what was the question?
Oh, brain fog!
Yep, hits hard and heavy some days.
I'm going to see a neurosychologist in July.
Told my Rhuemy it was causing problems with my job and he chuckled.
Joy

topaz731
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Date Joined Jun 2011
Total Posts : 14
   Posted 5/27/2012 7:57 PM (GMT -6)   
My brain fog DEFINITELY comes and goes. I find it very hard to verbalize the things that I want to say quite often and it's VERY frustrating to say the least. When I first started back to work after being diagnosed I was shocked at how badly I communicated with people, but with practice- I am much, much smoother these days. I still say the wrong word occasionally, can't think of simple that things I want to say like - "oh I just signed off of my...my..my..COMPUTER!" even though it's right in front of me- and I'll be pointing at it. It's annoying but funny too, so I usually laugh it off and so do my co-workers. ---
And doctors, yes, have dismissed me. I am running of of "ologists" that I haven't encountered yet, but I find that if they haven't been my rheumy or even my neph, they don't have as much interest in me. Case in point: I was completely dismissed last week by a very well known orthopaedic dr and was told that the swelling and pain in my ankle was from the lupus and was given a horrible and incomprehensible explanation, and there was essentially no injury and nothing wrong with me. Well three days later and reading the same MRI report, my Rheumy told me I had a torn ligament and necrosis in my tibia. Needless to say, I'm a little irritated. In my gut I knew there was something wrong. So if it was up to this guy- I'd be walking around with no treatment. I'm not one for second opinions just because I don't like what I hear, but if you don't feel right about it, I say go get one.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 5/30/2012 10:10 AM (GMT -6)   

Welcome to our forum Raven. Great name BTW. I’m so sorry you’ve had such a rough time, especially so young. Insurance companies are notorious for not paying anything for previously known  conditions, so maybe it’s a good thing the new doc doesn’t want to dx you with lupus (although I’m sure it doesn’t feel good).  I had to fight with my first rheumy who said nothing was wrong even though my ANA and anti-double stranded DNA were positive. He still wouldn’t dx me, but at least he put me on plaquenil. I’ve been with my second rheumy 6 years. We are a much better fit.

My very first symptom of lupus was depression, but I didn’t know it was lupus at the time.  Since diagnosis I’ve had 2 neuropsych exams. I was told neither one showed anything conclusive, but I found it interesting that my IQ dropped many points. Hmmm…The only time my neurologist showed any interest in me was after I had been in a coma for 2 months. I find neurologists are an odd lot and yes, quite rude.

Well Raven you will find our forum  a good place for info (see our resources at the top of the page), a great place to simply vent and you’ll always find a sympathetic ear. I hope we hear from you soon. Love, Butterflake aka Donna

 


A sister in the struggle
New Member


Date Joined Jun 2012
Total Posts : 10
   Posted 6/9/2012 7:13 PM (GMT -6)   
I have had a lot of success with celery. seriously, google brain inflammation and celery. The component that really works is called luteolin. The nice thing about it is that it works quickly.
You have nothing to loose by trying it, I am not kidding every time I ate celery I felt better, now I know that science has proved there is something to this. Andrea

Elsie Mae
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 6/12/2012 10:54 PM (GMT -6)   
Raven 212,

I can relate to on again/off again symptoms and Drs not being able to figure them out. I can also relate to doctors disagreeing on what is causing the symptoms and what to do about them, plus having inconsistant lab work results. I have dealt with that for several years and have no easy answer for you but can let you know you are not alone.

For several years I have had chronic pain and fatigue, memory and language problems. I have been to a variety of doctors including family physicians, rheumatologists, internal medicine specialists, psychologists, and neurologists. I've even been to two different Mayo Clinics and my problems could still not all be figured out.


Some of my doctors totally disagreed with other doctors' diagnoses. My previous rheumatologist kept telling me he did not believe I had Lupus, just OA and FMS. My new family doctor did several lab tests to determine the source of my problems. He agreed with the new lab results showing I positively did have SLE Lupus. He doesn't think I ever had FMS/Fibromyalgia and doesn't even believe in FMS. He thinks the symptoms I have had for the past 25 years were Lupus.

So, who should I believe? Based on symptoms I have read about in various books, pamphlets, and web site articles about FMS and LUPUS, I believe I have both of them.

My memory problems range from not remembering names, forgetting how to spell simple words, forgetting familiar phone numbers, forgetting meetings and deadlines, forgetting I have done something and starting to do it again, plus more severe---not remembering where I live or where I used to work and going to the wrong places. That was scary!

From what I have read in books on Fibromyalgia (which I also have) and SLE Lupus- "brain fog"/memory problems are fairly common. There are numerous articles and books, plus video games, etc. on techniques for increasing memory skills. I have also read that with age, memory problems can increase due to decreasing brain cells. There are a variety of techniques recommended to senior citizens to increase their memories that also benefit those experiencing non-age-related memory problems such as those with Lupus.

So, don't give up. Do your own research. If you lose faith in your current doctor and his diagnoses/treatments, I recommend finding another doctor. I also recommend you keep a daily log of your various symptoms, problems, medications, therapies, medications, etc. and watch for patterns. These can help your doctor with both diagnosis and treatment. These could also prove helpful should you ever need to apply for disability.

Don't give up! Stay strong!

Jujubeee714
Regular Member


Date Joined Jun 2012
Total Posts : 26
   Posted 6/18/2012 9:49 PM (GMT -6)   
Raven, he's full of himself. You need a new rheumie who will LISTEN to you. Here's the lupus creed:

God grant me the serenity to accept the things I cannot change,
> Strength to change the things I can,
> AND....the Wisdom to hide the bodies of the doctors who said....
> There's nothing wrong with you, it's all in your head!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/19/2012 11:11 AM (GMT -6)   
hehehehehehe! ROLF!
Joy

Cronewinter
New Member


Date Joined Apr 2012
Total Posts : 6
   Posted Today 11:35 AM (GMT -6)   
I thought I was getting early dementia I get so "foggy"sometimes and other times not so bad. I just got a Dx of "something in the circle of lupus type disorders" more tests needed but in the mean-time (I now understand what "mean" time is) keep taking the prednisone and hydroxychlor.. I'm sorry to learn that I'm not alone and still I am grateful to know there are others dealing with the same issues. What a strange new world being sick is...

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted Today 1:05 PM (GMT -6)   
Welcome, Cronewinter.
How about starting a thread of introduction. We'd like to know more about you. :)
Joy

raven2012
New Member


Date Joined May 2012
Total Posts : 5
   Posted 8/4/2012 1:01 AM (GMT -6)   
Thank you all for your reassuring replies. I am glad to know that others can understand what I am going through with these confusing medical issues. So, now when I get down about the drs. and such, I try to keep thinking of everyone else out there, in the same boat as me. Hope everyone is doing well.

sangwuine
New Member


Date Joined Aug 2012
Total Posts : 10
   Posted 8/4/2012 6:49 PM (GMT -6)   
Julie Koehler said...
Raven, he's full of himself. You need a new rheumie who will LISTEN to you. Here's the lupus creed:

God grant me the serenity to accept the things I cannot change,
> Strength to change the things I can,
> AND....the Wisdom to hide the bodies of the doctors who said....
> There's nothing wrong with you, it's all in your head!


Amen.

I'm new to the cycle of ologists but I've had the symptoms for years (which if they listen to what I'm saying at all I seem to get a lot of nods and yeah okay type reactions.) First doctor I ever went to because of the joint pain (which I've had since high school) told me I was just fat and if I lost weight it would go away. Finally found a doc who took me seriously and ran blood work and lo and behold, positive ANA, anti-RNP, etc. Even so the first rheumatologist I saw told me I was just fat and that physical therapy would make me all better. Switched rheumys and still no diagnosis, but at least they're starting treatment (plaquenil). (Apparently I don't meet enough specific criteria for systematic lupus. eyes )

Good to know this is a common issue.

Best of luck to you raven!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/4/2012 7:28 PM (GMT -6)   
Welcome, sangwuine.

I've been told I don't look sick so many times. People think I'm a hypocrondriac. That I just complain all the time. I got so used to people saying it's all in your head I was beginning to believe them.

Until I finally complained to the right doctor and he put two and two together and ran a blood test.
Joy
When life throws you lemons....
Pick them up and throw them right back at them! :))

NDsomeday
New Member


Date Joined Aug 2012
Total Posts : 5
   Posted 8/5/2012 9:17 AM (GMT -6)   
I had a normal memory test with my neurologist too! I wasn't really looking for validation of my symptoms through that test though- my fogginess comes and goes and anyone close to me could vouch for it if there was ever a need ;) I will say, (and trust my outlook on this has changed over the past couple years) that if I'm not able to trust my doctor, reach my doctor easily when I need to, or if I'm ever treated rudely or dismissed, I don't see that doctor again. I got lucky with my first rheumatologist, but I've been in a hospital where he didn't have privileges and had to see another one. The other one said he thought my tachycardia (which was even happening in my sleep while in the hospital) was "white coat anxiety" meaning, being around doctors was making me nervous! Lol! I guess I was dreaming about those God-like doctors... ;)I worked in the medical profession for years, my husband had a heart transplant, and at that point I'd been treated for lupus for two years. My admitting doctor ended the
rheumatologist consult at my request after that, and during that same hospital trip a cardiology consult led to them finding my valve problem. Point being, second opinions and switching docs when your gut instinct doesnt line up can really lead to better health and peace of mind. Also, though not lupus related, the hole in my husband's heart that led to his transplant was totally dismissed in the ER until I threw a fit and demanded another doctor see him. At that point in my life, I wasn't one to speak up and demand anything, but I knew he was really sick, and if I took him home that day he wouldnt be okay. And the doctor was just young enough and rude enough for me to feel like I just might know better! Glad I spoke up. He was transplanted 3 weeks later.
ANA neg Lupus with nephritis and antiphospholipid syndrome

raven2012
New Member


Date Joined May 2012
Total Posts : 5
   Posted 8/5/2012 5:18 PM (GMT -6)   
I hate when doctors say that. I've been told that about my tachycardia for so many years. Thankfully, now I have a good Cardiologist who believes what I tell him and treats me for it. It is definately not white coat syndrome, since it occurs constantly. Does your tachycardia ever give you anxiety or the fight or flight feeling?
I am glad that you stood up to that doctor in the ER, I hate to hear about doctors like that. The ones that think they know everything and don't listen. I hope you and your husband are doing well.

NDsomeday
New Member


Date Joined Aug 2012
Total Posts : 5
   Posted 8/8/2012 2:20 PM (GMT -6)   
Thank you! I don't really have symptoms with my tachycardia- I start feeling light headed around 140-160 bpm, but it's not usually that high. I did a 48 hr holter monitor, and didn't record any symptoms the whole time, but it was in that range while I was resting several times. My cardiologist is pretty cool- but that hospital rheumatologist was awful :) He made me really grateful for my Rheumy, and that I didn't have to see someone like him first. I wouldn't have known it was lupus if I had, because I wasn't like a lot of folks who knew they had something autoimmune going on for a long time, and were in search of a diagnosis. I hope you're doing well too! My husband is 5 years post transplant, firefighting and coaching soccer :)
ANA neg Lupus with nephritis and antiphospholipid syndrome
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