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jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/29/2014 6:07 PM (GMT -6)   
Hello AubreyBear and welcome to the forum!

Maybe you could start a brand new thread and use what you said in my post about "appointment tomorrow." That would give everyone a heads up, and you'll receive some feedback that way.

Take care--and good luck!
Jan

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 3/31/2014 6:43 PM (GMT -6)   
Thanks Jan.

I thought about it quite a bit, and after reading some (bad) reviews of the Rheumy I was going to see, I decided to cancel my appointment. Since I have a negative ANA, no doctor (in my experience so far) is even willing to consider lupus. And maybe I'm being pessimistic, but I'm assuming this one would have too. So, for now, since my symptoms aren't enough to impact my life so terribly, I'm going to hold off and not put myself through the stress of a doctor basically telling me there's nothing wrong with me, when I know there is.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 4/1/2014 5:59 AM (GMT -6)   
It can take a long time Aubreybear. I have been sick for years and have had insensitive doctors that said it was all in my head. I have also had some great doctors who finally understood and helped me to get some answers. You have to hang in there my dear, don't give up.

My primary doc has horrible reviews and I love her. She is the one who put it all together in the end and sent me to a rheumy that is equally awesome. My last primary was an egotistical jerk who kept trying to give me anxiety meds for what turned out to be pleurisy.

I hear you, it's got to be the most awful feeling when a doctor brushes us off and the bloodwork doesn't come together in that slam dunk they are striving for.

Persevere and muster up that strength when you feel you are ready to pursue this again, a whole lot of us have had the same discouragement. You aren't alone.

Hugs :)
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/1/2014 9:20 AM (GMT -6)   
Hello AubreyBear--

I hear and understand your frustration. In the past, I've seen two rheumatologists who were so full of themselves, they didn't give a poop about me--along with my former GP, who never had a clue or suggestion when I exhibited symptoms of a problem.

I gave up, too, until my raynauds 's became an ugly constant on my toes and I started putting puzzle pieces together. Now I have a fantastic GP who had some tests done last week. No word on the results yet.

As so many people say on this forum, an ANA isn't the absolute defining factor in diagnosing lupus...who knows, it could change to positive with the next blood test...

I wish you the best. You, above all else, know what your body's telling you.

Vent away when you feel like it!

Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 4/3/2014 3:37 PM (GMT -6)   
Well, I would say I have visited a doctor (PCP, a rheumatologist and an endocrinologist) about these issue probably 10 times up to this point. I have had my blood drawn at least 8 times and every time, with the same result. about 3-4 years ago, I just decided to give up.

My mom had lupus and her face rash really gave it away. Unfortunately, I really don't have the face rash and I have a much darker complexion. I have cousins and other relatives with various auto-immune disorders.

I am very active and I eat very healthily out of fear of heart disease (also rampant in my family), so I am able to keep my lupus symptoms at bay. But in the past few years, I have begun to have very bad GERD/IBS and lots of swelling and cyclical bruising. Nose sores, scalp sores, intermittent exhaustion, all the little symptoms that add up to one thing: probably lupus. My partner encourages me to just look at it this way: I have lupus and although the doctor won't diagnose me, that's what it is. So for now, I guess I'm okay just working on my own to keep the symptoms at bay and be thankful that I am able to do so through a healthy lifestyle. One day, when I am not able to do that, maybe I will go back to the doctor.

I do enjoy reading this message board and I appreciate everyone's support and especially that I don't feel alone in this battle. Thanks guys turn

tashalynn97
Regular Member


Date Joined Apr 2014
Total Posts : 27
   Posted 4/3/2014 6:15 PM (GMT -6)   
AubreyBear said...
Thanks Jan.

I thought about it quite a bit, and after reading some (bad) reviews of the Rheumy I was going to see, I decided to cancel my appointment. Since I have a negative ANA, no doctor (in my experience so far) is even willing to consider lupus. And maybe I'm being pessimistic, but I'm assuming this one would have too. So, for now, since my symptoms aren't enough to impact my life so terribly, I'm going to hold off and not put myself through the stress of a doctor basically telling me there's nothing wrong with me, when I know there is.


I have been in the same boat. Don't give up. It just takes the one doctor to finally see it or to be willing to try something. I had to change my doctor after having them for years cause she wasn't willing to consider lupus until I "get worse" sounded stupid to me since I'm miserable. Why wait for organs to fail? I found a dr willing to start me on plaquinel to see if it made a difference. If doctor doesn't listen or it doesn't feel right, leave and move on. You will find the right one. I wish you luck. Prayers are with you

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/9/2014 9:25 AM (GMT -6)   
How're you doing, AubreyBear?
At an early stage in the Dx arena, I understand why you'd take a step back. It can be pretty frustrating.

Like you, I'm used to an active lifestyle (well, when I have the energy), and am usually ready for a long walk with my pooch when the weather cooperates. (We live in Wyoming.) (It takes some rallying for me to get out the door, but once I am, it's so "right.")

Yesterday, we headed out, and I couldn't go our "normal" distance. On the last mile home, my knees and feet were really talking to me.

My toes are a mess, but I can usually push forward--at least 10 miles, thanks to my great sneakers. And our trail is by a beautiful creek with so much nature. Very peaceful and calming.

I'm afraid I might have to curtail our outings, which would be awful. Our walks/hikes are my time away from "disease" thoughts/questions and my pooch makes getting out even more enjoyable.

Enough about me...I was thinking of you and hoping you're doing all right.

Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 4/9/2014 12:15 PM (GMT -6)   
I'm doing much better than I was when I posted. I still have some bruises and tiredness, but overall, I'm feeling much better. I've done some research on lupus flare ups during PMS and that seems to be the worst time for me. It almost gets to a crisis situation just about every month, where I am so emotional and in so much pain and then it almost completely subsides within a week and then it's back...

I had a sinus infection two weeks ago, so I only exercised once, but I'm back on the wagon this week. I usually run 3-4 miles or run and spin 4 times a week. I feel so much better when I do, aside from the soreness and blisters. I also have a dog, and although she hates running, it does her good too!

I say just take it a day at time... do you ice your knees? I had to lay off running for a while because of my knee and hip (piriformis) and now I've learned to listen to them whenever they speak. Slow down or stop altogether if my knees say so!!

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/9/2014 12:38 PM (GMT -6)   
Good to hear that you're better than before! And maybe you can anticipate the awfulness that accompanies PMS? Not that the horrible feelings would change, but you would know that they might rear their ugly heads. . . .

Nope, haven't tried icing my knees--hadn't even thought about it! I'm with you as far as listening to them. If they're screaming, take heed and lay low. (My left knee is a replacement.)

Kudos for getting back in the saddle. I can relate to how it makes you feel better--even if it makes you feel yucky sometimes afterward! We're fortunate in that we can participate in exercise, since several folks on this forum are not able to do so.

Just got a phone call from a rheumatologist's office, from which my primary has received a good recommendation. Fingers crossed. 150 mile drive (one way) isn't bad at all if he and I hit it off! :)

Keep in touch--
Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

tashalynn97
Regular Member


Date Joined Apr 2014
Total Posts : 27
   Posted 4/9/2014 2:39 PM (GMT -6)   
I'm with you jan I drive 90 miles for my rheumy cause she was the only one that did anything about my issues. Mo would drive further if I had too
Natalie

Lupus,fibromyalgia,osteoarthritis,IBD, Gerd,asthma, epilepsy and past history of ovarian cancer

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 4/9/2014 3:13 PM (GMT -6)   
Jan, usually if my knees hurt during my workout, I go straight home and lay down on the floor with some bags of frozen vegetables on my knees. I stay like this for 15 minutes or so and then eventually take a hot bath later, usually with epsom salts. It seems to help and keep my tendons from hurting too badly the next day.

As my partner says, working out is all about the feeling of accomplishment (or exhaustion, I'm not sure which tongue) afterward! And knowing that you're doing something good for your health.

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/9/2014 4:04 PM (GMT -6)   
Natalie, I'm so glad you've found a doctor who makes a positive impact concerning your issues. That's a big part of the battle!

I have to keep in mind that driving at least 75 miles in WY to get ANYWHERE is no big deal. :) The rheumatologist I plan on seeing is in Billings MT.

Yep, as you know, if you and your physician aren't on the same wave length, I can only imagine feeling worse when you leave the office. That's how I felt in 2009 when I saw two rheumatologists and stuck out with both of them. I was not meant to have a relationship with either one!

Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/9/2014 4:18 PM (GMT -6)   
AubreyBear, great idea about the frozen veggies! I will definitely try it the next time I cannot wait to get home from a walk! And the Epsom salts--I've thought of that, just haven't done it. Too easy to take a pain pill and lay down with the heating pad on my back and neck.

My problem is that I so enjoy the farthest part of our walks, that I want to reach that point and explore with Ginger (Snap)..then part of coming back is payback...(but Ginger could go forever!).
I'll need to start gauging better. Hmph :)

Thanks for the tips!
Jan

PS
I had three Boston terriers till within the last four months. Numerous diseases took one and advanced dementia took the other. 13 and 15 years old, Pearl and Opal. I got a twin stroller to take them for walks along with 2.5-year-old, Ginger. What a sight! I miss my girls...
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/9/2014 4:21 PM (GMT -6)   
Natalie--
Typo: "struck out with them," not "stuck out with them"
Jan

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 4/9/2014 6:08 PM (GMT -6)   
Jan- Sorry to hear about your dogs. My pup is a 5.5 year old Lab mix and I dread the day that she passes away. I'm sure you gave them a great life though! And thankfully you still have Ginger.

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/9/2014 10:01 PM (GMT -6)   
Many thanks. It's been tough, and I'm so grateful to have my little live-wire, Ginger. :)
My "first born" was a black lab mix. She was a blessing, so much so that I named her A.B. She lived a long and full life--till 16 years of age. Your pup has lots of time with you!

Thanks again--
Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers
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