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No Diagnosis, but all the pain!
#202975 03/29/11 01:00 AM
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I just discovered this message board and it came at the perfect time! God is so good to me! I have been dealing with AS for years now and it has become a struggle for me emotionally. Some days I get consumed with frustration! I am still not officially diagnosed, even though my primary care and orthopedist doctors agree that I have this disease. I have been to a rheumotologist and he refused to diagnose me because "it is so rare in women" and "treatment can be painful and expensive." I just wanted to slap this guy and say "Don't you understand, this disease is more painful and expensive than the treatment!" I have the genetic marker, I have family history, I have GI issues, I have so many of the symptoms.I guess it isnt enough! I went into a remission stage for two years and didn't think again about AS. I stopped getting shots in my butt and just tried to get through college. 6 months ago, I woke up in the middle of the night, and had to call an ambulance, I was in the worst pain and collapsed to the floor. I was diagnosed with Pleurisy and it lasted for months. I checked out this website and low and behold - AS can cause pain in the chest that mimics pleurisy..what a coincidence. I haven't been able to work out (which i used to 4-5x a week!) and the same pain I felt before is back (no pun intended). Now I am ready to accept what I have, and getting a diagnosis will help me start to deal with this. I want to be treated correctly and have a doctor who wants to treat me. Unfortunately I have to go back to the same doctor because there are no other providers who deal with AS in my area. My appt is a week away and I am just overwhelmed with emotion because I am scared he is going to say the same thing. I am willing to drive to another city to see a doctor if this guy decides to be dismissive again, but for some reason I am just filled with doubt and fear. My friends and family are so supportive, but I hate that they ask me everyday how I feel, and I can't say the normal "I'm good" because its a lie. I feel like crap and wish I could break my spine so it would feel better. I wish I didn't slouch. I wish I didn't feel like I am a walking zombie and so fatigued all the time. I wish I could pay a personal massager to rub my back and shoulders. I wish I could get a restful peaceful sleep. But I can't so i feel like CRAP. Friends and family are great support, but I just want some encouragement from other ppl who are feeling the same pain I am.

Re: No Diagnosis, but all the pain!
mks1153 #202980 03/29/11 04:13 AM
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Whether AS specifically is the correct diagnosis or not, it wasn't right for him to dismiss you in that manner. Be sure to advocate for yourself. Say what you said here regarding preferring the treatment to the untreated disease. Also, if he isn't willing to give you the AS label, ask him what else he thinks it could be. Maybe he'd go for undifferentiated spondyloarthropothy at least. That opens up the same treatment options.

Also, stick around here. Be sure to check into the main forum too. It gets more traffic, to be sure. Most of all, welcome. I think you'll find this to be an exceptionally supportive place with incredibly helpful, empathetic people.


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol
Re: No Diagnosis, but all the pain!
mks1153 #202982 03/29/11 04:52 AM
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Hi,
Welcome to the AS Family. I am sorry you had to join us but we are really glad you found us. You are in good company here. I am sorry you are in pain. I know it can be hard to deal with, especially when you are not getting enough rest. I am able to take naps during the day and they have really helped me. If you are able I would highly recommend them.

I am sorry that the doctor you saw just dismissed you like that! From what I have seen on these boards it is quite common. I really understand your statement about lying about how "good" you feel. I am now at the point that I am tired of telling people how crappy I feel, so the lie almost feels good! I know it’s twisted....

As for your doctor’s appointment.....I would spend the next week prepping for it. Write down the top 5 things that you want to address with him and or questions you have. Get your answers! If his responses to your questions are not good enough or you don’t understand ask him to explain himself. Be empowered to take charge of the appointment because this is your health and your body. If he dismisses you again then go for the drive to another hopefully better doctor but at least you went into this one in charge!

I know I talk tough but it is only because I have had to learn the hard way that I deserve answers to how I am feeling. I deserve a treatment plan for whatever it is that is going on with me....I don’t care if I have a hangnail I deserve a plan of attack on how to deal with it. One of the "veteran" ASers made a comment about doctors that stuck with me...they don’t have to be nice just respectful and hand over the drugs.

Just remember that you are in charge of your appointments. He is there to help you not hinder you.

I am sure more will chime in. Everyone here is fantastic.

Hang in there


"No one can make you feel inferior without your consent."-Eleanor Roosevelt
Re: No Diagnosis, but all the pain!
sunshine01 #204917 04/17/11 04:20 PM
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Welcome! Sorry you had to find us, but glad you did; Where did you find that AS can cause chest pain, because I was having chest pain before my dx and the dr at emergency 1 just called it anxiety and stress?

Any way, I hope your doctor comes to his senses and realizes that 10 percent of AS patients are Women, so you very well could be part of that 10 percent. I hope you get you dx because it clearly seems to me that you have AS or some spondylotherapy/ Auto immune disease. Have you thought about recieving a second opinion from another rheumatologist?


Im 20 years old, I go to culinary school. DX with AS in July 2010. Currently on Tramadol and Flexoril. Starting Humira, or at least trying to get my insurance to improve it first.
Re: No Diagnosis, but all the pain!
Ken1 #204976 04/18/11 06:40 AM
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Ken, anecdotally, it seems more common for us women (maybe the added weight on our chests?), but rib pain is incredibly common with spondy. It's an unusual experience at first, and for me since it usually hits right under my breasts, feels like it could be in deeper and perhaps my heart. It isn't- but I was paranoid it was at first.

Also, it's a higher percentage than 10% of women. I believe the currently accepted ratio is 3:1. My doctor is stuck in the era of 10% though.


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol

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