Hi everyone! Hope this finds everyone doing well or as well as can be expected for us :) I haven't posted in a few weeks, but have a few questions and need advice.
I went to my second appointment with my Rheumy a couple weeks ago and he's still not convinced to put me on any sort of Lupus medication (Plaquenil, heavy steroids, etc.) because I'm not showing a butterfly rash..but as soon as I start having that present, then he will...it just doesn't make any sense to me. He said that I have many of the other symptoms, but he's not ready to put me on anything yet, so will just continue to treat my symptoms as they come on. He upped my dosage of Gabapentin and is now diagnosing me with Fibromyalgia. I was also starting what I thought was a sinus infection, so he put me on Z-pac.
Since that visit, I have lost my voice for over a week...went back to a walk-in clinic where they put me on a different antibiotic and a heavy dosage of steroids. I finally got my voice back to a certain point, but called my family doctor because I was so sick on Friday and she's referred me to an ENT. My appointment is on Wednesday, but since my voice is back for the most part, I'm wondering if I even go? This is however, my second case of strep/losing my voice in under a month.
But in addition to that appointment, I'm also headed back to my GI doctor for my extreme abdominal cramps which almost landed me in the hospital last week.
I'm tired of being sick all the time, ESPECIALLY with different type of ailments so I'm being passed around to specialist after specialist, but my Rheumy won't treat anything but the symptoms for now.
I know, such an ordeal, always going to one Dr or another. Having strep so often in a short period of time makes me think that you are not getting over it. As much of a hassle as it is, may be best to go and have the peace of mind. They are so thorough and efficent, and may just get it straightened out.
My GP is an Internist, so he, my Rheumatologist and my Chiropractor are my go to guys, but sometimes you just have to go to more specialists. Hopefully one day we can be considered 'ONE UNIT' as the Chiropractor says, and be able to be treated by just one Doctor. We can dream anyway!
I hope that these Doctors can get you in a better place, on the road to feeling better, so you can enjoy your young life and your lovely children.
Wishing you my best,
SK
PS, I dream of going to a place like the hospital on the TV show 'House' where there is a team of diagnosticians to keep me and do a total diagnosis and give me the proper treatment!
Oh my, you sound just like me! Lol
I have had strep throat about 5 times in the last year and have a constantly sore/achy throat. (I have a post on it)
I feel like I’m building an entourage. I have an appointment with an ENT soon, I have a surgeon who will remove my gallbladder this month, on my second rheumatologist, a podiatrist for a bone tumor in my foot, etc.
It gets so exhausting!
I’m sorry your rheumy won’t treat you for lupus until he sees a butterfly rash. From what I understood, not everyone with Lupus gets one. My first rheumy was a crock and diagnosed me with fibro when I had positive ANA, rash, fatigue, pain, mouth sores, etc… This is why I’m going to my second. I hope it will work out better.
Anyway, it may be good to go ahead to the ENT if you are able. Strep is no fun and from my experience, once I started getting it as an adult, it just doesn’t let up.
Yes, Rachel, we do sound a lot alike.I know I've three positive ANA tests in the span of 3 months, and he still says I'm not presenting all the symptoms, even though I have history of blood clots, pleurisy, fatigue, mouth sores, joint pain and hair falling out like CRAZY. But since I have normally very thick hair, he wanted to see complete bald spots. My ENT appointment is Wednesday and I have my appointment with my GI specialist on Monday for chronic and HORRIBLE upper abdominal pain. I've already had my gallbladder out, and have had pretty much every test under the sun ran on my abdominal area and they still don't know what the heck's going on. But since I have such horrible pain all the time, I keep hoping for answers at one of these visits.
SK, I was JUST telling a good friend of mine how part of me just wishes I would have collapsed last week to get sent to the hospital so they could treat me like an episode of House. Being passed around to all these specialists in such a short time frame makes me feel like I'm a hypochondriac or my doctors really don't believe anything's wrong with me.
Thanks for the advice ladies. I will keep my appointment with the ENT just to be on the safe side. And maybe I should be looking into a new rheumy too :)
After every other way he has let you down, wanting to see a complete bald spot would have been my 'way out the door'! Would have wanted me to get a handful of his hair first! That would have really 'sent' me! My hair is falling out too, so I know your pain there! I think I would be shopping for another one too!
So sorry you had to put up with this treatment! My blood pressure just went up considerably! I just re-read this twice momma, I really have to say I would fire this jerk! No nicer way to say it, babe!
Tell your ENT what you just told me and ask him who HE would go to! Sometimes we have to go through bad bedside manner for the brilliant and capable, but this one ...
Best to you, don't let it wear you down, don't give up! Please! There are good ones, that are kind as well!
I also lost my voice & my pulmonologist says it's due to inflammation around my lungs which is also affecting my voice box. Are you having shortness of breath too? I lost my voice at least once a month for the past year, before that it was every couple of months. I hope you find some answers. I'll be praying for you!
I dont have the butterfly rash or the mouth sores, but my rhumatoligist KNOWS i have lupas, from all the tests and the rest of my symptoms. I guess you just have to find the right one, i had a second opinion, he didnt even look at my blood work or medical history, he took one look at me and said you dont have lupas you have fibro mialgia..........needless to say i didnt go back to him. Some doctors just dont give a crap, their just in it for the money, you just have to find the doctor who really cares about making you better. :)
A little more about my storyI was told by a dermatologist when I was 17 after breaking out in a horrible rash and having a positive ANA test that I was either going to get diagnosed with Lupus later in life or I was just a carrier for it. Since that visit so many years ago, I've had so many surgeries to deal with endometriosis.
I developed blood clots in my lungs when I was pregnant with my first child and then had him 2 months early because I developed HELLP syndrome. THEN developed a 2.5 pound blood clot under my incision that I had to have surgically removed 3 days after having him. He was only 3 lbs. 7 oz. when he was born. I had my blood sent all over the country to see if I had some sort of clotting disorder, but it all came back fine.
I've been in the hospital every other year with pneumonia and bronchitis...and since I was little, when I get sick, I get REALLY sick.
I've had my appendix out, my gallbladder out, and still have horrendous abdominal pain that levels me at least once a week.
It wasn't until about 4 months ago, when I started getting the horrible joint pain, my hair falling out like crazy, the worst fatigue I've ever had that I decided to go to my family doctor. She knows that I don't go in to see her unless I'm really sick and when I told her all my symptoms..and she knows my history...she said I'm going to test your ANA, but I'm positive you're dealing with Lupus. When it came back positive, she referred me to a rheumatologist...and between him saying that I don't have the butterfly rash and no bald spots...he also said that when he was in school at least half his class was convinced they had Lupus. So basically saying that's what I'm doing?
Honey, we're all here for the long version, anytime! You have surely had more than your share, hopefully you can either go back to your GP for care until you find a Rheumatologist who can read the writing on the wall, or find a better one! I try to always stay calm on here, but this one really rattled my cool. I have dealt with my fair share of them too, believe me! Some should have just been pathologists!!!!!
It is important for your disease to be diagnosed and managed so that you can care for yourself, and your children, live your young life to the very best possibility! Don't let anyone rob you of your time and your health.
Stay strong and do NOT give up, get the care you deserve!
I saw my first rheumatologist yesterday. When I explained to him that I had been to so many specialists...with no specific answers, he seemed to understand. My desire is to find someone to connect the "dots" of my symptoms and tell me what is the root cause. I feel positive now about seeing him. He is young and seems to be on the cutting edge of new treatments, etc. But he was quick to say, he would not prescribe any med until he was positively sure of what I am dealing with.
The next step is having a battery of blood work done before I see him next. Because I had done my "homework" for the appt. (with the help of my lupus online friends) I felt confident and understanding of the things he talked about. Now he said, I was definitely the teacher type who had my lesson plans ready....whereas he said my hubby sees me as broken and wants me fixed today! The dr said he was inbetween us, therefore we'd make a good "team."
I am very optimistic that this specialist will be the key to hope for... better care and quality of life. I do hear your heart and hope you can find the one who will finally offer answers and help. It was interesting....in the waiting room a conversation was going on about what a great dr and how much he has helped those there...a great feeling before I went into his office.
Hugs and prayers for you!
Faye
PS When he mentioned the specific drugs he would prescribed...I knew what to ask because of our online friends had talked about help, side effects, etc. This site has been so helpful to me. Thanks everyone!! Love you all!
Sounds like you have found a good Doc! I am so glad for you! Be thankful he is thorough and thoughtful before trying a med, that he wants to know more. I know the 'fixed today desire', guess we alll do, but this takes time and thought. So good you have such a good feeling about this, and I look forward to hearing of your journey of progress!