New from California.

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 calf. After doing that on both sides to each knee, he concluded the tendons on the sides of my knees were really weak. Well, I had gone back in about a month telling him about the problems with my shoulders and wrists. He ordered a blood test for all the different forms of arthritis and x-rays. When the test results came back the doctor said that everything was good, except that these antibodies in my blood were high. He explained it to me that I had MCTD and that we had caught is early but there's not much to do for it except deal with the occasional pain and discomfort. Needless to say this doctor was no help for anything    So after that DR. appointment I got in the car and cried a little bit, I wasn't sure what it was I had. I drove home and hopped on the laptop and googled MCTD for myself. What scared me the most was what could happen when/if it got really bad, with reaching the heart and lungs. It took a couple days for it to proccess. Anyways, now I am switching over to a better General Physician and in the process of getting a referral to a Rheumotologist (sp?). I've accepted having MCTD and just managing the best I can with the pains and going on with life.  

Don't worry... In time you'll know all too well how to spell 'Rheumatologist'...

mollyingrid92 wrote: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 calf. After doing that on both sides to each knee, he concluded the tendons on the sides of my knees were really weak. Well, I had gone back in about a month telling him about the problems with my shoulders and wrists. He ordered a blood test for all the different forms of arthritis and x-rays. When the test results came back the doctor said that everything was good, except that these antibodies in my blood were high. He explained it to me that I had MCTD and that we had caught is early but there's not much to do for it except deal with the occasional pain and discomfort. Needless to say this doctor was no help for anything    So after that DR. appointment I got in the car and cried a little bit, I wasn't sure what it was I had. I drove home and hopped on the laptop and googled MCTD for myself. What scared me the most was what could happen when/if it got really bad, with reaching the heart and lungs. It took a couple days for it to proccess. Anyways, now I am switching over to a better General Physician and in the process of getting a referral to a Rheumotologist (sp?). I've accepted having MCTD and just managing the best I can with the pains and going on with life.  

I am also new here. To be honest it is better to be told that it is MCTD than it is to be told that it is firbomyalgia.

The kind I have can go to either RA or Lupus. It looks like I am hurtling towards RA.

The blood tests that tell you how the disease is progressing are: ANA, RA, and the anti-CCP (I have that name wrong). In my case I was negative for the last one so my last doofus rheumy claimed that he disagreed with my previous Rheumy (I moved) and that I had fibromyalgia. The truth is, I have a positive RA factor that points to RA and I have a positive ANA with speckled pattern.

The good news for you is that you have been caught very early and there is no real need to despair, unless of course you do not respond to the medication. The purpose of the medication is to slow the disease down.

How long did it take you to see your rheumies? It's been going on a year now and I'm having trouble getting into see one. It didn't help that my last doctor didn't help at all...but my new doctor is trying. And It's been trial and error with anti-inflammitories....mostly error. But I think I've found one that works half way decent for now.

I am sorry to hear about your RA and speckked ANA. Fingers crossed that you find something that helps with the hurting. And thank you.

mollyingrid92 wrote:How long did it take you to see your rheumies? It's been going on a year now and I'm having trouble getting into see one. It didn't help that my last doctor didn't help at all...but my new doctor is trying. And It's been trial and error with anti-inflammitories....mostly error. But I think I've found one that works half way decent for now.

I am sorry to hear about your RA and speckked ANA. Fingers crossed that you find something that helps with the hurting. And thank you.

It can take at least one month to see a new rheumy. In Canberra I was lucky to snag someone who was just brought in by the practice and he was coming from Sydney. However, there is a whole other story to tell about the saga involved, especially when he transferred to Canberra Hospital and opened a clinic there, but at least I did not have to pay for consultations.

It is because I delayed that I waited more than a month to see my new Rheumy. I am seeing him again on Monday. Right now I am in a middle of a flare that is affecting my jaw so the appointment is very timely.

The one in between, the one where I am using a few choice names to describe him told me to make an appointment for a year's time and that was in June. Of course, since then I have had several flares, but what would he care. I think I had a wait of at least two months to see that creep in the first place. I have finally cancelled that appointment.  

Oh wow, you got in to see him pretty fast. It's been almost 9 months and me and my GP are still trying to get me into see one. It might be cause there are so few in the area and all the doctors are sending their arthritis patients so they're really booked and not taking new patients.

I'm glad the current rheumy is working with you a lot better. I think a year is too long in between appointments. The best of luck to you on your appointment Monday!

mollyingrid92 wrote:Oh wow, you got in to see him pretty fast. It's been almost 9 months and me and my GP are still trying to get me into see one. It might be cause there are so few in the area and all the doctors are sending their arthritis patients so they're really booked and not taking new patients.

I'm glad the current rheumy is working with you a lot better. I think a year is too long in between appointments. The best of luck to you on your appointment Monday!

Up until recently there was only one that was working on the Central Coast of NSW. He is a total jerk.

Now there are at least 3 others. There is a woman who shares the same practice as the jerk. She might be a lovely person, but if I was to see her and she used the jerk's notes then she would not take me seriously. That is what I have previously experienced. There are two others that have set up in the same area. The one I am seeing also has rooms in Sydney, probably at or near the Royal North Shore hospital. He is a very funny man... nothing like being sent to the naughty corner because I did not bother about blood tests!! Now that is a part of the longer story. This particular doctor knows Chandi my previous Rheumy who is now working in Canberra. As far as I am concerned, the fact that they are known to each other is good news for me.

There was a real need for new doctors to come to the region. If they had not come then I was prepared to travel to Sydney to see one because I was not willing to return to the jerk.

That is so understandable. I can't stand jerk doctors. My previous GP was a jerk. So I switched, and this doc is pretty awesome. Sent a referral to UC Davis here in California to one of their rheumys. No word back yet though.
Well, high five for finding a better rheumy!

mollyingrid92 wrote:That is so understandable. I can't stand jerk doctors. My previous GP was a jerk. So I switched, and this doc is pretty awesome. Sent a referral to UC Davis here in California to one of their rheumys. No word back yet though.
Well, high five for finding a better rheumy!

I hope that you get into see a rheumy sooner rather than later. You need to get that assessment and you need to be placed on appropriate treatment.

For me, it has been a long time coming to get one of these doctors to fully acknowledge what is wrong.

I get very cranky when they write it off as fibromyalgia. That is the first reason I was cranky with the jerk. According to him, since I did not test positive for the anti-CCP then I could not possibly have RA... yet what he was saying in this blanket statement contradicts what I have been reading. There were other things as well. It was the way that he asked questions, barking misleading questions at me, and getting misleading answers.

During the last visit that I had with him, I mentioned getting headaches. My goodness, the way he asked questions, there was no way that he was paying full attention with regard to what was going on. Headaches have so many causes. It could be something to do with sinuses, but I know that headache and face issue. It could simply be a tension headache. On the other hand the headache could be the result of issues in the neck and jaw. You would never know that from the questions that he asked. The biggest issues I had with him happened to be related to the frequency of blood tests as well as the adjustment downwards of my medication. Also he got cranky because I did not want to take Endep which is prescribed for people with Fibromyalgia, as well as people with depression. It is Amitriptilyene. In my view it did nothing for my condition. I think that this was the medication that I initially had back in 1987-1988 or somewhere about that time. It turned me into a zombie so I did not want to take it again. He told me to take one for about a week and then start taking 2 at night. I took 1 tablet most of the time. When I went back for a visit and said I did not take the 2 or was reluctant to take the 2, he abused me. Then he wrote a letter to my doctor claiming that I had not taken the medication at all... the jerk (please insert a more appropriate word, because jerk is the mildest work I can use here).

When it came to the last appointment that I had with him, I provided documented evidence that I had more than fibromyalgia and that I had generalized arthritis, in my toes, knees, wrists, elbows, hips, spine etc. He told me to come back in 12 months, to get my GP to prescribe the Lyrica and he took no further interest. He then wrote to my GP again, with the comment that the Lyrica is used for fibromyalgia.

When I heard what he had written I exploded and demanded to be sent to someone else. There was no way I was going to continue with that jerk. In the time that I saw him my health had in fact deteriorated. He showed no interest in doing any proper follow-up at all. He moved what should have been monthly blood tests out to being 3 monthly blood tests... I was fed up. At the same time I had several flares of my arthritis including an episode of costochondritis, which affects the rib cage, a flare in my pelvic region as well as more than 1 flare involving my jaw. During last summer I had problems being able to wear shoes because of fluid issues. Last summer was the worst I have ever had the particular issue which I have suffered since I was about 19 years old. So far, so good, I have had some swelling in my legs but not as bad as last year during summer when I could not even get into my shoes.

I am glad that these other rheumies have turned up in this region because we simply could not continue to have a situation where there was only this one jerk. I was prepared to travel to Sydney to see someone, rather than return to that jerk, so yes, I am a lot happier. At least I am getting somewhere now. My medication has been changed again and I am getting some benefit.. except of course the flare that I have just been through.

One more note, in Fibromyalgia one does not have an elevated CRP or ESR.