View Full Version : Doctor Visit Update

03-30-2009, 05:08 PM
Okay, I went to the rheumatologist today. It was an adventure. I am extremely exhausted after all of this.

First of all, I absolutely LOVE my new dr. He is amazing and was extremely willing to help me. He did all kinds of things. I now have new diagnoses and medicines. I have SLE (still, but I knew that one) and I now have Fibromyalgia, Raynauld's and Sjorgen's Syndormes. Along with this, he believes my kidneys and CNS are being attacked by the lupus. The test results for this aren't in yet though; he will call me and let me know. I feel very optimistic about my new diagnoses, mostly just because I have a dr. who knows what is wrong with me and how to treat me. I'm on a whole slew of medicines now, but it's exciting to know that they may help me. I go back to see him in about a month.

I feel excited, for the first time in a long time with this disease. I hope this post was legible and coherent. I also hope that everyone else is having a good start to the week.


Angel Oliver
03-30-2009, 05:12 PM
Oh Amanda i am glad the Doctor was a nice one.Sorry about the diagnosis but like you said you knew what it was. I hope now you start to get some relief from the right medication. Sending you gentle hugs.You rest now, i know how tiring a hospital visit can be.


03-30-2009, 05:17 PM
So very to happy to hear that your new rheumy is a gem :). Amazing what validation can do to one's psyche isn't it?

What kind of tests did he do/order to determine if the CNS is involved?

03-30-2009, 05:44 PM
Congrats on finding a new Rhumy that you really like. It is very important to be comfy with your dr. I hope that the new meds will help you. I'm sure its not fun hearing all these different things wrong with you but at the same time at least you know what is wrong. Let us know how the tests come out.

03-30-2009, 06:01 PM
I'm not sure exactly what tests were run. he was spitting out test names faster than my brain could comprehend. All I needed to know is that he wanted to help me, and I need his help. It's an amazing feeling to finally have the other diagnoses and medicine. I start the regimen tonight...I bought a pill box today to help me keep it all straight. It should be interesting.

03-30-2009, 07:21 PM
hi amanda,

i know you are tired from the events of your day. i am thrilled to hear about your dr. To have him on your medical team must really make you feel confident that feeling better is just around the corner.

you have worked hard educating yourself, and preparing yourself so that you could participate in the diagnosis. you rest now, and know that you just handled lupus, it did not handle you. congratulations...

03-31-2009, 04:59 AM
good to hear that your rheumy is a good one :]

&& i hope that your lupus isnt attacking your kidneys!! but if they are, i hope that its not bad!!
hopefully the results come in soon!!

wish you the best!

03-31-2009, 04:59 AM
what exactly is CNS???

03-31-2009, 05:35 AM
good morning ashley,

CNS is central nervous system

sick n tired
03-31-2009, 01:31 PM
Amanda, How Awesome that you found a great rheumy...I do understand the excitement when you finally get a diagnosis..it defys all logic but it means you are at a starting point...Did he put you on other medicines? and when do you see him again to find out the results of your tests?
This is a better reception than you had at the neurologist, I am so glad for you...

03-31-2009, 03:32 PM
Thanks for all the nice words. It is great to have such a wonderful dr. I also forgot to mention the doctor said I have IBS. I'm not really sure what it is except for the bowel issues, so if someone knows anything about it, i'd appreciate the advice with it.

I'm now taking Plaquenil 200mg twice a day. Neurontin 300mg once a day for a week, then twice a day for a week, then 3 times a day for a week, then four times a day for a week for the fibro pain and the nerve issues. Then a re-evaluation in about a month. I am also taking 3 5mg tablets a day of Prednisone for a month then 2 tablets for a month and a re-evaluation. He also told me to get some prevacid for the stomach issues, fish oil, vitamin d and a daily multivitamin. I was also told to avoid anyone who is sick because the plaquenil is an immunosuppressant and will cause me to get really sick...I already get really sick easily anyway, so this one kinda scares me. But I'm hopeful.

sick n tired
03-31-2009, 03:43 PM
Hey Amanda,

IBS is irritable bowel syndrome...someone with that tends to go from loose stools or even diahrrea to constipation...it can cause nausia and pain, too. I have that, also...the prevacid, though would not be for that but for the acid reflux or GERD...do you have reflux? That means burning in your esophogus? One of the worse times of it will be when you are laying down. Oh well...I have both IBS and the reflux(gerd)

Plaquenil is an anti malarial pill that they discovered helps lupus patients...the prednisone is a immunosuppressant..It is true about getting something easier when you are taking prednisone...you are in University, right? You will just have to do your best to stay away from someone coughing and sneezing...wash your hands...etc...
Hope is a wonderful gift and it is really good that you have it....I am hopeful for you, also...

03-31-2009, 04:06 PM
sick n tired,

thanks, that's helpful. The doctor didn't say anything about reflux, but i get heartburn a lot, is that the same? And yes, I'm going to a University, so it's difficult to avoid people, especially the sick ones because of classes, but we do what we can, right?

sick n tired
03-31-2009, 04:55 PM
Yes...what you are calling heartburn is probably acid reflux.... Well you can try to stay away from those who are openly coughing and sneezing...one other way would be to wear a mask, but you might not want to do that right now...I do understand, just know that is an option if you catch everything that comes around, now.