Mixed Connective Tissue Disease Awarenes
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This is a forum for MCTD sufferers, the first of its kind! (to my knowledge).
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For more information on Mixed Connective Tissue Disease, check out the website:
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Please note: this is the first time I have created a forum so if there are any bugs please report them asap so I can fix them. Contact me via email:
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I hope you find the help, support and information you need and I wish you to be happy and flare free :-)
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New to Group

Thu May 21, 2015 12:12 pm by leeG

HI All, thanks for letting me join, i was diagnosed two yrs ago, altho had symptoms for much longer and now wonder if the MCTD started in my 30s when i was diagnosed with chronic fatigue. now also have raynauds, hashimoto's, blepharitis (sp?), asthma, and multiple allergies, Plaquinel has amazing effects until i had a severe reaction, and now on Atabrine (quinacrine) but its not as effective. …

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New to group, New to disease

Tue Aug 26, 2014 5:58 am by MissDaisy

Hello,
I am a 36 year old female with 3 boys, ages 4-9, and I work as a 911 Dispatcher. I started having symptoms about 3 years ago starting with lumbar pain. I put it off for well over a year thinking it was just over-exertion. When I couldnt take the pain anymore as it was constant, and even just turning my head to the side caused severe pain. I got to the point that standing, sitting, and …

Comments: 1

How much pain before accepting medication?

Fri Sep 19, 2014 9:46 pm by josephine landau

Hi - My names Jo, I'm 42.
I was diagnosed in January of this year with MCTD, after a year or so of growing symptoms (Reynaulds, aching joints etc) I am a working mum with 2 boys, so my days are fairly hectic.
I take B12 injections for fatigue, Levothyroxine for low thyroid and Tegretol for an epileptic seizure I had 10 years ago -So I was reluctant to add to my drugs list and I declined any …

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Not yet diagnosed teen from Finland

Thu Mar 27, 2014 6:12 am by finnishgirl

Hi everyone!

I was happily suprised when I found all this great stuff for us MCTD patients! And hope to get to know some people with this illness. Because there's not a lot of stuff for us in Finland.

I'm a 15-years-old girl from Finland. I still haven't got a diagnosis for MCTD, but my rheuma specialist has suggested it after many years of different tests. And it seems to be logical, I have …

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Another Australian story

Fri Nov 29, 2013 9:50 am by Ozzie1954

First of all, it is so good to find a forum with people who have been going through the same issues. I was doing a search on earache/jaw pain which is afflicting me this morning and found this forum.

My story begins in 1987 but probably goes back a lot further because of other issues that surfaced in my teens. It started after I had a bout of the flu, went back to work where I was handling …

Comments: 1

New from California.

Fri Jul 26, 2013 10:28 pm by mollyingrid92

Hello! My name is Molly, 20 years old, California resident. At the beginning of the 2013 year I noticed I was having really bad knee pains that would last for a while. When I finally went to see my doctor, he moved my leg around to see how my knee was working. Then he did this weird on where he would put a hand flat on the side of my knee and with the other hand push on the opposite side of my …

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This is all new!

Thu Apr 18, 2013 2:35 am by Admin

Ive never run or created a forum before so there may be some bugs, please let me know as soon as possible so I can correct them! I hope you find it easy to use!
Admin Very Happy

Comments: 9

Hi from Australia

Tue Apr 30, 2013 12:46 pm by gorillagirl

Hi everyone Very Happy

A brief bio. Female, 45, Hashimoto's since young. Started with flare ups after activity, sore joints and muscles, feeling sick, bloods abnormal and high CRP and ESR, symptoms pointed to lupus. Doctor nightmare for some years, the usual, it's just your thyroid and you have fibro, maybe you have narcolepsy, others haven things worse than you blah blah blah.

Found a good GP, …

Comments: 8

Newbie, new to the dx, but not to the symptoms

Tue Apr 30, 2013 2:20 pm by Lenorekitty75

Hello Everyone ! Smile

Just came across this site today. Which is odd because I've been googling MCTD for months now. It's nice to know there are others out there in the world who could relate to what has become my life. Although I have frequented lupus and MS boards over the last 9 yrs and had wonderful support.

I am Christina, 37...mum of 3 the youngest is 3 and the oldest is 14. The Dr's have …

Comments: 4

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» New to Group
Thu May 21, 2015 12:12 pm by leeG

» Flare up PLEASE help!
Sat Feb 21, 2015 1:48 pm by aceequine7

» Help with getting a doctor to understand...
Fri Oct 31, 2014 6:16 am by nancehg

» Pain management/plaquenil vision issues
Fri Oct 31, 2014 5:49 am by nancehg

» New to group, New to disease
Fri Oct 31, 2014 5:37 am by nancehg

» Ear ache/Jaw pain - Anyone else?
Sat Oct 11, 2014 8:39 pm by finnishgirl

» How much pain before accepting medication?
Fri Sep 19, 2014 9:46 pm by josephine landau

» Burning sensation and peeling of skin on hands and feet
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Help with getting a doctor to understand...

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Help with getting a doctor to understand...

Post by StacieicatS on Mon Apr 22, 2013 4:56 pm

Hello,

I am 34, married, have 2 small children (16 months and 4 years old), I work full-time as a human resources manager. I'm so tired that I can barely function and I hurt all over. My pain is primarily in my hips and back. I decided to reach out on this forum because I can't do it on Facebook and maintain privacy.

I have an appointment on Wednesday with my Rheumatologist and I was wondering if anyone has had any luck with helping a doctor listen to you, understand or empathize. Are there any key words that will make them listen? I feel like I'm getting dismissed because I am a new mom, plus I have generalized anxiety disorder and I'm being treated for depression. It seems like my doctors want to give me a prescription for an SSRI anti-depressant to fix everything. I have tried several different kinds of SSRIs for depression and they just don't work for me (endless side effects). I am taking Wellbutrin because it is the only thing I have had any luck with and a very small dose of xanax as needed.

Here's my history:
I need to start by saying that I have never been high energy. I have always had difficulty falling asleep (since childhood) and I have always had an even harder time waking up. I was diagnosed with Hashimoto's thyroiditis when I was 19. At the time, I thought that diagnosis explained this. Since I was a child, something has always hurt. I have just recently realized how much I complain about a wide variety of pains/aches. Something always hurts. I have constant low back pain, but on any given day, I might be complaining about pain in my ear, my neck, my toes, shoulder, ribs, etc.

For me, "normal" is forcing myself out of bed in the morning, forcing myself to get my children dressed, forcing myself to shower and get ready for the day, drinking a lot of coffee, and going to work (very stressful job). With my second pregnancy, I remember telling my OB that something was wrong...that I was beyond pregnant tired...I could barely function. She did some lab tests and my thyroid levels were off and my vitamin D was very low. I also had *severe* rib and shoulder pain that presented about halfway through my pregnancy. My OB diagnosed me with costochondritis and she told me it should go away after I gave birth. After I delivered my 8lb 12oz baby, I literally felt like I had been hit by a car. When I left the hospital, I was retaining so much fluid that I could barely get my clothes on and could barely move. My lungs felt weird and I had trouble breathing but didn't say anything because I figured the nurse would just think I was crazy. In retrospect, I realize this was stupid. I went home and continued to retain water, to the point that I weighed 30 pounds more than I did before I had my baby. I could not get out of bed without help. I could not go to the bathroom without help. I could not lift my baby. I could not do anything. Somewhere around day 6 post-delivery, I developed a mild fever (101-ish) and called my doctor. She had me come to the office, which was almost impossible. She wasn't sure what was going on but suspected the beginning of a breast infection or a uterine infection and prescribed a broad spectrum antibiotic, lasix (diuretic), potassium, new pain medicine, and anti-inflammatory. I noticed some improvement but still felt awful for several weeks.

I returned to work in March and by April I knew something was really wrong because I had never been so tired in my life; I hurt from head to toe and had suddenly developed carpal tunnel syndrome. I have always had such a sharp memory (to the point that I remember license plate numbers, phone numbers from childhood, my entire family's social security numbers, etc) but I have noticed a sharp decline over the last year or so. I got lost one day going to the store with my daughter, I can't recall certain words or recall the wrong word, words won't come out, I have short-term memory issues, etc. I went to my doctor and he ran some blood tests but everything came back normal...he suggested that I was tired from having a new baby, put me back on an anti-depressant I've taken in the past (Wellbutrin) and dismissed everything.

In July, I went to my orthopaedic surgeon because every joint in my body hurt and I was having horrific back spasms...I was having trouble walking. I have been seeing my orthopaedic surgeon since I was 26 because of back pain/spasms. I had a bulging disc and I thought that was the culprit of the back pain all of these years. Anyway, he ran a battery of seemingly ridiculous tests including extensive lab work, x-rays, an MRI, full-body bone scan, etc. The x-ray showed some slight abnormality in my hip (not sure what it was but they weren't too concerned). The MRI showed that my bulging disc had actually gotten smaller, and the full-body bone scan was normal. My lab work came back with a few issues: 1) TSH too high (Hypothyroid) 2) I was positive for HLA-B27 (ankylosing spondilytis) 3) My ANA test was positive (very high) with speckled and homogenous patterns.

I was sent to a Rheumatologist for the first time in August. He didn't think the HLA-B27 antibody presence meant anything because of my European descent. He said HLA-B27 exists in a large portion of people of European descent and that my bone scan would have lit up if I had that. He ran more labwork and diagnosed me MCTD (I had high levels of anti-RNP) , but he was unsure what the overlap illnesses were because I didn't have clear symptoms other than joint pain and muscle aches. I have had some random rashes in the past but nothing at the time. I had issues with Raynaud's for a short time several years preceding this but nothing at that time. He thought a lot of the symptoms were because of being a new mom, not getting enough sleep, working full-time, depression, etc. He prescribed plaquenil and an anti-inflammatory and sent me on my way. I checked back at the end of October and told him I really wasn't feeling any improvement. He told me to stop taking the plaquenil since it wasn't helping and gave me a new anti-inflammatory. He also suggested that I may have fibromyalgia too. He gave me a sample of Lyrica and explained that it would help me sleep soundly, which would help me feel better during the day, etc. So I took it for about 10 days and decided that it wasn't for me. It did help me sleep, but I felt like I was drunk in the mornings and could not focus my eyes at work. I couldn't think straight. I also gained 5 pounds during this short time period. I called the nurse and told her that I didn't like it and would like something different. The nurse called back and said she wanted to increase the dosage of Lyrica to twice a day to see if that would help. I told her I was not interested in that and then she told me there was nothing else they could do for me. I knew I should have kept pushing but didn't have the energy.

In December, I completely over did it while cleaning my house for Christmas company and landed myself in the emergency room because of severe back and hip pain as well as back spasms. They gave me muscle relaxers and pain medicine (this combination of medicine helps me a lot while I have it). I have been depressed since then because I feel like there's no light at the end of the tunnel. Everything hurts and I am feeling "pregnant-tired" again (No, I'm not pregnant). I recently went to my primary care physician and told him what I was going through. He tried to explore the idea of quitting my job but that is not possible. He finally told me to go back to the rheumatologist and explain to him that this is affecting my day to day activities. My PCP wants to know if this is the MCTD causing the fatigue/pain. If it is the MCTD, he suggests a more aggressive treatment; if it isn't the MCTD causing these issues, he said he would treat me for fibromyalgia. I've missed 14 days of work since January 1st and am relying on my husband to do almost everything after I get home (grocery store, cooking, bathing kids, etc) because I have nothing left and I can't physically do certain things because of the pain. I also have recently developed a light lupus looking rash on the right half of my face and part of the left side. I have also started having problems with Raynaud's but my fingers have been turning blue, not white.

I just want to know what you have to do to get a doctor to listen. Any tips? I plan to see a different highly recommended Rheumatologist after this appointment regardless.

I can't not work right now. Disability isn't an option. I really want a 3rd child but can't possibly do it with the way I'm feeling right now. I feel very stuck.

Help! And sorry for the lengthy post...I just had to get it out.

Stacie
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Re: Help with getting a doctor to understand...

Post by MamaLolo on Tue Apr 23, 2013 12:10 pm

Stacie,
I can relate to so much of your story. I wish I had some good advice or something profound to say that would make a difference in your life, but all I can say is I understand. I wouldn't wish this pain and fatigue on anyone and yet it so comforting to know you aren't alone.

I have tried being tough and just pushing through the pain and fatigue, telling the dr only the bare minimum of my complaints. I have been to the dr and completely broke down in tears. I have gone with lists of symptoms so I don't leave anything out... It doesn't seem to matter what I say or how I say it I get the same type response everytime. "Lets just keep trying this a little longer" or I get offered some other drug that is practically the same as the first. Can you be a narcotic addict when you don't even take them?! I want something to help ease the pain so bad but I was told by both Rhuematologists that I have been to that I am too young to start pain meds... WTH?! I am 30 & apparently not too young to be in constant pain or have a MCTD diagnosis. If these docs had to deal with what us patients do you know they would take something for the pain. Sorry about going off on that tangent, I am in a pretty bad flare right now and it is really pushing me.

I hope this new Rhuematologist is great for you. I would say it is best to just be completely honest, don't hold back at all. And yes, tell him/her that your symptoms are affecting your daily life. Good luck!

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Re: Help with getting a doctor to understand...

Post by Admin on Wed Apr 24, 2013 11:30 pm

Hi StacieicatS.
welcome to forum, I have repinned this post into the subject of Doctors.
I'm so sorry you have had such a rough time. This is something we all go through of course so we sympathise with you. Except this isn't what you want is it? You want understanding from your doctor. Well this is a really difficult subject to answer & one that is asked a lot. I think I'm going to do some research on it & write something on it.
As MamaLolo said; I have gone in, in tears, with a list, a diary, kicking & screaming & it's always the same reaction. I get the feeling that most doctors don't really acknowledge our illness as 'real' & the only reason they treat it is because they don't want to be sued for malpractise over something that is recognised as a real illness! (if that makes sense?)
I would say to definately wait to have another child (but of course this isn't my place & of course your choice), this is why i haven't had children, I cant bear the thought of having children with this illness No again my personal choice!
I understand your whole thing with depression, I have battled depression on & off my whole life, I think it's something that just comes with each person from a young age, but the good thing is, now that I know when I am heading down that road I can handle it better. Smile

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Re: Help with getting a doctor to understand...

Post by StacieicatS on Mon Apr 29, 2013 7:12 am

Thanks everyone. The appointment went okay. He seemed a little more attentive this time, but I still question whether he's the right rheumatologist for me. I had an MRI on my hips and he's waiting to see if the pain is caused by inflammation or if it is something else. If he sees inflammation in the MRI, he is going to prescribe steroids. Not sure how I feel about this, but some improvement would be nice. I should know something mid-week.

Thanks for all of the kind words and support. This forum is great! flower
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Re: Help with getting a doctor to understand...

Post by MamaLolo on Tue Apr 30, 2013 8:36 am

I hope you get answers from your MRI. While steroids do usually ease pain from inflammation they turn me into a person I do not like. I get very hateful, irritable & hungry. Realizing that this is the case helps in trying to control it, but just be honest with yourself & know that the meds are the meanies, not the patients. I have a strong love/hate relationship with prednisone... Good luck!

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Re: Help with getting a doctor to understand...

Post by kimmieg33 on Thu May 02, 2013 2:56 am

I have that same love/hate relationship with prednisone

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Re: Help with getting a doctor to understand...

Post by StacieicatS on Fri May 03, 2013 10:59 am

For the love of god. They did the MRI on my right hip only instead of my left hip, or both hips. The pain is out of hand in my left hip but no answers still because of someone's oversight or ignorance. Ugh.
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Re: Help with getting a doctor to understand...

Post by kimmieg33 on Sat May 04, 2013 6:32 am

You've got to be kidding Shocked
That's just great, another trip to the docs and another wait for possibly NO answers.
So sorry this happened, what a pain in the a#* Are you in the US?

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Re: Help with getting a doctor to understand...

Post by Admin on Sat May 04, 2013 7:35 am

StacieicatS wrote:For the love of god. They did the MRI on my right hip only instead of my left hip, or both hips. The pain is out of hand in my left hip but no answers still because of someone's oversight or ignorance. Ugh.

Oh FFS! I can't believe that happened to you!!!!!! I'm so sorry for you. No
I'd threaten to sue for prolonging a diagnosis that could eleveate your pain. If you could do that??? I don't know I'm not a lawyer lol.

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How are you now?

Post by LaraC on Thu Aug 29, 2013 2:10 pm

Stacie, I was just in here browsing the entries and came across yours from earlier this spring. How are you now? I'm hoping you found some relief. I've been in the same place as you, but I was older, I am not sure how you're managing with your kiddos, it has to be so hard. I have left work before and sat in the car and cried because I was so tired. If you come across these boards again please write in with an update. I wish you the best.

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FATIGUE

Post by nancehg on Fri Oct 31, 2014 6:16 am

I too am going through the getting the dr. to 'get it" syndrome, and may divorce him sometime soon. I have had Raynauds, esophageal problems, low thyroid functioning, a rash all over all the time and other symptoms I probably can't think of right now cause I'm so fatigued for many years. Nevertheless, just got diagnosed with MCTD this June after putting my foot on PCP's throat and saying "Run every autoimmune test you know"! Since (and I say this almost guiltily) I only have lower back pain and no other RA, I think my MD doesn't take the other symptoms too seriously. "Yes I know you see people far sicker than me, but I am really struggling to get to work and not able to do much else" was my first try. He put me on Plaquenil (of course) which has so far done nothing. My fatigue is absolutely debilitating...is this resonating with anyone? I have to sometimes work up to going upstairs to get dressed with the muscle weakness, shortness of breath, etc. So I pinned MD to the wall and demanded steroids (Dexyamethasone as Prednisone and I don't get along), which have helped considerably but now he wants me off them due to risks. I get this, but when I went off for a month I could hardly move so I put myself right back on them AMA. Well, rheumy was none too thrilled with me so now he's trying an immunosuppressant, Imarun, which also takes months to work so still fat as a pig on steroids but managing. Point is I think you have to just about say "Sit down, I have the following list of issues", then emphasize that no, you are not a histrionic depressed wreck, but that fatigue is ruining your life. His only way to relate to fatigue was to mention medical school. I said, "No, that's exhaustion, it goes away with sleep". I had to push for a more aggressive approach but I have my own business and was not going to let that go down the tubes. Also, asked dr. what he would take if he could no longer make it in to his practice. Anyway, I feel like a battering ram and like I said may divorce him, but I think you have to find a way to make them comprehend what this is doing to your life. If they don't respond after that, they are technicians not healers.

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