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Thread: Im New...Opinions wanted please.

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    Default Im New...Opinions wanted please.

    Hi Everyone,

    I am new here, and while I don’t have a diagnosis, I am thinking this is where I will belong, hopefully sooner rather than later.... (For a diagnosis, not to be sick of course).

    My story starts primarily back in May, when I started having rotating joint pain (never symmetrical). The pain would be sever, last a few days, and move to another location or two, before finally disappearing for a short time. I assumed Palondromic Rheumatism, but had a less then supportive family at the time, who essentially told me it was all in my head. There for, a Dr. Appt was never made. I lived this way until December, when finally the pain in my shoulder, coupled with Christmas was too much for me to handle, so I booked an appointment with my Dr. I was prescribed Naproxen, and sent for blood work, CBC, RF, CRP and Sed rate. Not even a week later, I received a call to go in for the results of my blood work! My CBC was normal, but my RF was 88 (normal range <20) and my CRP was 27 (normal range <10), SED rate was normal. The doctor didn’t say much at that point, but has referred me (urgently) to a Rheumatologist. I had started keeping a pain journal back in June, so I provided that to her as well for my file. She sent me for more blood work, including an ANA this time, and sent me on my way.

    A few days later, I received a call from the specialist booking my appointment for March 13th... (Yes that is urgent, lol).

    Currently here is a list of what has been going on...

    Family History
    Mother – Juvenile Rheumatoid Arthritis

    Previous Medical Issues
    • Tubes in ears as a baby
    • Hospitalized for pneumonia around the age of six
    • Frequent hospital trips for Asthma (between the ages of 7-11)
    • Stool sample for frequent diarrhoea, came back normal, was said to be stress related.
    • Borderline high blood pressure and protein in my urine with first child, born 3 weeks early.
    • Tachycardia, chest pains, spotting, with second pregnancy, born 6 weeks early.
    o Underwent EKG (came back abnormal)
    o Went to heart institute, EKG was ok, Echo was ok, and slow valve pumping.
    o Had legs and Lung scans for clots. (Results were negative)
    • Kidney infection – spent the day in the ER with IV and IV antibiotics, no UTI prior to

    Odd things (with in the past year)
    • Rash around mid section and forearms
    • Clicking in throat
    • Yeast infection (first ever)
    • Ocular Migraines (infrequent, average 2-3 a year)
    • Fingers can turn pale when cold (have turned blue three times since January 6)
    • Frequent cold hands and feet (always feeling cold)
    • Dizzy spells
    • Nausea spells
    • Frequent headaches, even when taking Tylenol/naproxen
    • Red rash on one cheek with little white raised bumps (lasted three days)
    • New food allergies (apples, carrots, cherries, hazelnuts…)
    • Swollen lymph node in armpit
    • Frequent swollen lymph nodes in neck
    • Swollen painful bump behind ear
    • Extremely tired (despite sleeping 9 hours)
    • Losing train of thought mid sentence
    • Mixing up common words

    Plus a daily Pain journal of the past 6+ months... (It’s long, so I will spare you the specifities).



    I’m going a little bit crazy, I do not want to self diagnose, and honestly, as long as the Dr can make me feel better, I don’t care what it is called!

    At this point, I feel like my personal and work life are being affected by how tired I am, and that there is always something hurting... it is becoming VERY depressing

    Any comments very appreciated...
    Last edited by bella189; 01-20-2012 at 12:48 PM.

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    Hi Bella and WELCOME! You made me laugh about the "URGENT" comment! Isnt THAT the truth! Well, you mirror SO MANY of us on WHL so i BELIEVE you ARE in the right place! Even if you weren't you would be WELCOMED anyways!!! It's a GREAT place to get support and advice. I'm happy to hear you keep a journal, that is crucial for your drs to see. One of my GOOD drs told me once " a GOOD Dr. will be HAPPY you keep a journal and a binder full of your medical records and he SHOULD look at it and if he doesnt, then find a new one!" March is a while to wait BUT are you taking anything for the pain? Ibuprofen? It helps me SOMETIMES. I hate to say it BUT your personal life as well as work WILL be affected unfortunately. These illnesses WILL change your life, YOU WILL BE OK though. It's all about adjusting things in ways that are going to BEST for YOU. It's scary, at first especially, BUT educating yourself and your family is a BIG start in it all. Of course having the right DRS is MORE IMPORTANT than anything. It took my hubby and I 3 yrs to get even ONE good Dr on our very short list of good ones. YOU know YOUR BODY Bella and dont IGNORE that no matter whatr drs say. It's not "in your head". I heard that from my dr of 13yrs for 2 yrs into my illness before i finally moved on because my husband made me. He has known me for 21 yrs and he said "Im sick of this S***, you're sick and I'm not going to have her tell you otherwise anymore!" So move on if you are not "feeling it" with ANY dr. They are NOT GOD like most of them think and they are NOT YOU. You know yourself BETTER than anybody and our bodies are telling us something when we have these symptoms. You for sure sound like you have Raynauds. The cold hands and feet and turning different colors are a sure sign of it. It comes with the territory! UGH! Get hand and feet warmers, they work GREAT! MY dr said its crucial to keep them warm. PLEASE rest when you HAVE TO and CAN. It HELPS. Please take care of yourself and I know others will be along with GREAT advice for you!!! HUGS!!!
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    Saysusie (01-22-2012)

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    Hi Bella,
    Welcome to WHL. It sounds like your GP is on the right track.
    The high RF alone should spur the rheumy to start you on some medication. It make take some trial and error to find just the right meds that work for you, but you should get there.
    I deal with Raynauds, too. I always wear warm socks and I have some very fuzzy warm ones to sleep in. My hands aren't too bad yet, but they are getting there.
    Good luck with the rheumy, and keep us informed.
    Hugs,
    Marla

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    Saysusie (01-22-2012)

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    Hi Bella; Welcome to our family. Lucky7 has given you some excellent advice and information. I want to reiterate what she said about knowing your own body, not letting anyone tell you that it is in your head, and finding another doctor if the one you are dealing with is not willing to listen to you and treat your symptoms.
    Also, you are doing the absolute correct thing by keeping a journal and insisting that your doctors read them and take them seriously. Coming here is also a step in the right direction..learning as much as you can about what your symptoms may indicate is one of the best ways to help you to help yourself.
    There are so many auto-immune disorders and, for many of us, we suffer from more than one of them simultaneously. The diagnostic process can be quite lengthy as it is really a process of elimination. However, in the meantime (and until a diagnosis is made), continue to educate yourself, keep your journal, and insist that you be heard, treated, and never dismissed. We are here to help you as much as we can..again, welcome to our family.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    tgal (01-22-2012)

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    Thank you,

    I had writen out a long reply but my computer ate it... right now i do not have the energy to re-type it. I will reply when my energy comes back. But thank you to your replys

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