What do I ask this time?
I wasn't sure exactly where to post this...It's about symptoms sort of so I thought maybe this would be an ok spot?
On May 4th coming up will be my second appointment with my new Rheumatologist. The first visit I had with him was rather quick I guess, he examined my entire body looking for swelling and any other abnormalties, and we did a lot of talking and he drew me a picture explaining that yes I do have an autoimmune disease (not sure which out of the three they have roped in, SLE, RA or Sjogrens) and how it worked and what was happening to my body just to help make it more clear for me. I already new because of my first specialist but this man was very nice so I just listened again and now wish I got to keep that picture.
He drew blood from me at my last appointment which was on March 8th, to check on the abnormal antibodies and anything else that may have come up.
Now, what should I ask him this time around? They have been trying to figure out what is exactly wrong with me for over a year now, is there any way it can be sped up, or something? I mean, what if I want to apply for disability, how can I do that if I don't have a clear cut diagnosis yet? It's getting harder for me to keep a job because I always feel so sick every single day and the added stress I guess from worrying and everything else takes me down even further. I DO want to work, I DO want a career I just don't know how to juggle that, its so hard getting out of of bed as it is and I'm so young for pete's sake...23, I'm just a kid.
I have a book where I keep lists of my symptoms and anything else that comes up, and this is what I have:
-Positive for ANA, RF, and other ones I cannot remember the names of
-Morning stiffness lasting an hour or more in my hands
-Chronic pain in my hands/knuckles
-Chronic pain in my wrists and elbows, swelling/cracking/locking
-Extreme pain in both hips, worse on the left
-Chronic pain, swelling, cracking/locking/stiffness in both knees, left being worse
-Cracking/locking stiff/swollen ankles
-Lack of appetite(Unless on pred, then its increased, without the pred I'm rarely hungry)
-Low grade fever all the time, 99 or higher, never 98.6
-Sore, stiff, aching, muscles
-Unexplained, constant bruising on lower legs, upper thighs, hands and arms
-Puffy, swollen veins
-Difficulty grabbing/gripping with my hands (I ALWAYS drop things and I can't hold onto small things like buttons, pins, etc)
-Rashes on my body, mostly on my face, chest, arms, back and hands
-I can't gain weight, and I can't keep weight on either even now that I eat like a pig every day
-Dizziness, and I also faint quite often for no reason and out of no where, I just get black vision and go down
-Hives on my back
-Very sensitive to the sun, even if its not sunny I blotch immediately
-There was a period of time when I was younger where I would lose a lot of hair, it would come out in chunks when I brushed/washed it, but for the last couple of years that seems to have stopped.
My rheum knows most of this already but I have added new things now.
Also, back in 2002 (If I did the math right) when I was 16 years old I got really sick out of no where and nearly died from my white blood cells being wiped out. I don't know what happened because my mother (she's very mentally ill) never told me what was wrong and wouldn't let me find out so I STILL don't know. Is there any way that my doctor could go back and pull those medical records and take a look at them? I find that part of my history to be VERY important when it comes to all this now. I lived in Alberta at the time and I have been back in BC for 8 years now.
I can't remember if there was high protein in my urine test, I'll have to ask again. Are you allowed to actually look at your own file and get copies of it? Are there other blood tests or any type of tests I should ask for? Is there anything I am missing?
This is really hard for me because I am completely alone in this, no guidance, and very little support. The only one that is really here for me all the time is my best friend Danny but he unfortunately lives too far away from me right now, in Montreal, so he can only do so much from a distance. My parents aren't there and my siblings don't understand and are too busy with their own healthy lives.
I have books and I do research on the internet and try my best to keep track of my symptoms and any changes or anything at all really, but as soon as I get in that office with the doctor I get so nervous I shut down and rarely get to ask what I originally wanted to.
I wish I could just be diagnosed...With something, and if it's all three of them then fine, just please tell me already.
I have a diagnosis much like yours, and I have a lot of the same symptoms. My rheumy called it Mixed Connective Tissue Disease. I was positive for Lupus, Sjogren's, RA and Psoriasis. I attended a Conference on Sjogren's recently and learned a lot. If you check through the threads in Laurie's Lounge, you'll find the reports that I'm posting on the conference. I'm still not finished, so keep watching. Hopefully, they will help you.
I don't know about Canada, but here in the US, we have the right to request copies of all of our medical records. If I were you, I'd start doing that. I would even call the hospital and ask for the records from 2002. It's great that you have a running list of your symptoms. Keep doing that, and type up a list of questions for the doc as you think of them - then print them out and take them with you.
I had a mother who was very mentally ill, too. She also had many of the same symptoms that I now have. I think that she and my aunt had undiagnosed autoimmune issues and that she just couldn't understand or handle it mentally. Do you see any autoimmune symptoms in your mother? I'm very curious about the hereditary angle, since I think this has been passed down through my mother's family.
Good luck with all of this, and keep us informed.
Thanks for your reply. My mom says she has Fibromyalgia, but what she does is she likes to diagnose herself, or go to the doctor and if she does not like what she hears she will again, just diagnose herself with whatever problem or disease she decides she wants to have. I know that sounds crazy but its true, its really one of the many insane things she does. I do not talk to her anymore and I haven't for a long time because she is a very dangerous woman and abused me my entire life so I have removed her from the rest of my life for my sake. She has never brought home any proof as to what she is apparently ill with nor has she ever let anyone come with her in the room when she visits doctors, and she's lied to me and everyone else in our family my whole life so I never believe a single word she says anymore (plus she's never had any symptoms). The info I do get from time to time from other family members who still see her is that she keeps going to doctors and keeps coming back upset because she is being told time and time again, that there's nothing wrong, so she'll make things up. (She is a narcissist, world class manipulator and mental abuser as well as physical. It is literally impossible, to speak to this woman).
So, honestly I don't believe I got this from her(maybe in her genes? But its not active in her), and there is nobody down my line on either side who have/had anything like I do that we can trace back to, there is a lot of cancer but nothing else. I know my mom did not go crazy because she couldn't find anything wrong with her. She has not been right in the head since I was very young (even when my dad met her in their teens) and watching her all my life and the diagnosis she has now (Narcissitic personality disorder) but refuses to accept, keeps me believing it really is all in her head, for attention. Its a looooong story when it comes to her and the horrible things she's done.
I'm nervous about calling the hospital I stayed at in Alberta in case they think I am a weirdo or something for asking, so I think I will just ask my rheum if he can get those records.
Yeah...They have been looking for all three except when it comes to the sjogrens, I don't have the dry eyes and dry mouth (just high acid and difficulty swallowing) or mouth sores. So they don't lean as heavily towards that one, yet they still won't drop it from the list either.
I need to get a proper list this time of what he tells me, whats in my file, so I can be 100% accurate with my info when I post it on here, because I know that would make it even easier for others to reply to me too.
I will go and take a look at your posts Marla thank you.
Yes, your mother sounds quite a bit like mine. I eloped at the age of 19 to get away from mine. Luckily, I chose a real knight in shining armor and we're still very much in love after over 33 years. She told me that my father was dead, but I found him when I was 32. She had treated him so badly that he left, too. Don't discount that she could have an AI issue. They seem to have psychological effects on many people. I'm sure that my mother had AI issues. Of course, she also developed severe RA, which proves it, too. I'm convinced that the dementia that both she and my aunt had came from the AI issues.
As for the hospital, due to privacy issues, you may have to be the one who requests your records. Don't be afraid to do it - they are YOUR records.
Yeah my mom lied and told me for many years that my dad was a very bad person and he didn't want me, didn't love me, abused her (he never did), etc, etc, lie after lie after lie. Anyways...I've added memory and thinking/concentration problems to my list...
I'll do my best when it comes to getting those records, it seems crucial to me that I have that information.
Well today's the day, I go in at 11:30a.m., hope he has some news or something for me...
Hunniebun, you sound a lot like me. I swear I was reading my own post. I too am 23 and have practically the same symptoms with pain being worse on the left, etc. My mom also is bipolar and a also makes up things that are wrong with her but nothing has ever been wrong with me if you ask her. Anyway, hope you get some answers. My neurologist recently ran a B-12 test and found I had an insufficiency, but they're also testing me for MS. Let me know if I can help at all.
He still doesn't really know what to tell me other than what he told me last time. My bloodwork was the same as it was the last time they tested it, still the same antibodies (which I forgot to get the names of, AGAIN). He said he see's signs of Lupus, RA and Sjogrens. He drew that same picture again that he drew last time to remind me, and to explain to my dad who came with me this time. My list of symptoms he said are all typical of what he is trying to pinpoint and it could be any three of them doing it, or all.
He also started me on another drug called Aralen (250mg Chloroquine), that I take every other day, but I stay on the 5mg's of Prednisone every day since its working for me. He says since the Prednisone is protecting me (since it works for so many of these diseases), he can't make a firm diagnosis, and that the chloroquine can help steer me towards whichever disease I have if it's one, or perhaps all three. Is that a weird thing to do or has someone else heard this before? Does this make sense? I like this doctor and I don't really feel like having to move onto a third specialist because the wait's in between are SO LONG. He also said that someone who has multiple symptoms and multiple autoimmune diseases are easier to treat than someone who has just one straight problem (such as just SLE, or just RA), does that make sense too?
He asked if I'd go back on Plaquenil and I said no, he also talked about Methotrexate and my answer to that was a definite NO. I really don't want to go back on the Plaquenil, I really, really, really hate that drug and I'm hoping this Chloroquine doesn't do the same or similar things to me.
At the end of the appointment he said I have enough to build a case and apply for disability, and I guess I will give that a try, because I am just so...It's getting harder and harder to work and the fatigue is killing me and the pain I get in my hips is just so excrutiating there are days I simply cannot walk. I have a feeling I will be denied though even with him telling me I have a good chance since he has all the proof and there is no cure, etc, etc, but I will keep trying.
So frustrating, I have an answer, yet I don't. Whenever I am asked what's wrong I just say I have all three because that's what it keeps seeming like, what else do I say? Maybe I just shouldn't say anything.
You're dx is sounding more and more like mine. That chloroquine thing is a bit weird. It sounds a lot like the generic name for Plaquenil - hydroxychloroquine. I'm taking that, and it is supposed to help with the symptoms - I don't quite know what he's talking about with the "steering you towards one disease". Perhaps Rob or Saysusie will be able to explain that one.
I know that a lot of people are afraid of starting methotrexate, but I haven't found it to be so bad. The pill form made me very sick, so we switched to the injection. Jeff gives it to me every Sunday night, so that I sleep through the worst of the queasiness. I spend the next morning on the couch, but the rest of the week, I have a lot more energy. It's worth it to me.
There are quite a few people on WHL lately who have the MCTD diagnosis.
We're part of a fad, right?
Good luck to you.
Oh really there is an injection? I'll take injections, but I am sick and tired of PILLS! I don't want anymore pills. Yeah the chloroquine is another anti malarial drug, I really don't want to be on it at all but he told me to try it so I'll do it for one month until the pills run out, as I don't get a refill for this one. I've been getting cortisone injected into my hips every couple of months, but I'd like an alternative to that as well since I know its not good for you in the long run, but I just can't walk for long without it it seems.
I'm thinking of quitting my job too, its just so hard to find another one because of this stupid economy, and I'm also worried about new employers not understanding me.
I guess we are part of a fad haha..