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View Full Version : Appointment - mixed feelings



Spanglishqueen
02-09-2009, 04:34 PM
Hi everyone,

I went to the 2nd Opinion Doc today and it was a refreshing experience...although not much personality the chic is extremely smart and thorough. After reviewing my records and my outline (THANKS GIRLINDALLAS) she did a physical exam. Rotated limb s, looked in eyes, felt skin, etc... She then said I don't think you have lupus. YAY :!: She said she will run more labs to check the blood cell counts etc, since I didn't have all the labs and she is checking kidney and liver function (no one has done that yet). She said what she wants to do is rule out lupus and then focus on the other issues that may be causing this. None has ever tried to rule it out :)

Now here comes the mixed feelings part...if I don't have lupus then what do I have? Do I have to wait another year until I know...does something really bad have to happen before they narrow it down. How come I experience the same joint pains, memory fogs, etc.. as others here?
Lots of things on my mind. Believe me I don't want to be sick, but I am I just want the symptoms to go away. I hope they do soon.

And the other thing is I want to be happy that they are ruling it out, but I was a little hurt by how my husband reacted. He wasn't relieved it's most likely not lupus :( I mean I understand he is upset and frustrated and just wants an answer but I was hoping for a little YAY or something. We also had a fight before seeing the doc…..he's been stressed at work due to layoffs and his job may or may not be on the line so I understand he is under TONS of stress with work then me. But oh well.

I have always learned to not count the chickens until they have hatched, so I am optimistic the pro knows what she's doing and the blood work won't reveal any further suspicions. Well that's my story for now. I will keep you updated. I have the Sleep Study next Monday and the Neuro visit on March 11th so maybe I'll feel better after all the tests are done and they give me meds or whatever.

rob
02-09-2009, 05:34 PM
This whole Dr./rheumo diagnosis merry go round is so confusing. I know how you feel about not wanting Lupus, but wanting a diagnosis so you can treat the problem. After months, and sometimes years of tests and conflicting Dr. opinions, you just want to say screw it and just diagnose me with something. Not fun. I hope you find the answers you need ASAP. Oh, and that's great that you used girlindallases outline form for a Dr. visit. She really came up with a great idea when she thought that up. Have a good night.

Rob

sits_inthe_corner
02-09-2009, 05:48 PM
Hugs Spanglishqueen

Hope you get the answers you need soom. :)

kukukajoo
02-09-2009, 06:42 PM
thanks for the update and hang in there! I made my appt with Dr. Schur as I could get in to see him faster.... At my ENT appt today my MD was telling me she (your doc) really knows her stuff and WILL find an answer. Her best friend has lupus so we chatted about it and other things too. Her friend was going there evidently.

I can hear the frustration of you feel over hubby's reaction and I am so sorry! I hope he is just so worried and wanting some answers and relief as much as you are! It must be so hard for our loved ones to have to see us like this and suffer right along with us at times. I bet he just wants his wife back.

Did she give you ANY ideas about what she thought is was? Why the sleep study, did she order that and the neurologist visit?

Hang in there, I have a feeling I am going to get a similar answer end of the month and off we go on the hunt like Alice in Wonderland chasing rabbits!

Danica01
02-09-2009, 10:06 PM
I am so sorry you are dealing with all of this frustration and confusion. I can understand what you mean. You finally feel you are getting somewhere and you even have a pretty good idea what it is and then someone says that you are wrong. There is happiness about not having it but heart broken because you are right where you were at the very beginning.......one step forward and two steps back :? It causes a lot of stress and with all of the other life stressors you are dealing with, you have so much on your plate. Does the doctor have any clue what this could be????? Hang in there and know that you can count on all of us to help you get through this. I am sending you calm thoughts and gentle hugs tonight :angel:

Rastagirl
02-09-2009, 10:43 PM
Hi Spanglishqueen...

My heart goes out to you...This is such a tough road to travel. So many ups and downs. Feels like you're driving in one direction, only to have to turn around, or make a u-turn right there, and start off in another completely different direction. And you don't know how long you're gonna have to travel that way. You just want to know what it is so you can deal with it.

It is such a tough thing to be patient. Especially when it's your health. I wish the answers with Lupus, and all autoimmune diseases, would be more straightforward and easy to reach. I guess that's not to be, though.

For those of us with a spouse, this road we travel is even more difficult at times, because that person is included in so much of what we go through. And they are human so they have their feelings all their own about it. We can never completely understand what they're going through, especially when they love us deeply. My husband and I had a long talk once about this subject and he shared with me how awful it is to watch someone you deeply love be suffering and in pain, and how awful you feel that you can't fix it.

It may be that your husband had begun to understand the Lupus somewhat, and he hoped that a diagnosis would mean they would actually know what you are dealing with and could treat you better. And now it all may be back to square one. Now he may have to start over as well in dealing with another possibility.

I also watch my husband stressing big time right now over the economic issues and the possibility of layoffs. He's worrying about not only the possibility of losing his job, but having to lay off his whole team of software engineers. People he's worked with for 10 years...some that are his friends. Those stresses for our husbands, as well as having to deal with our illness and just the normal everyday stress of life, can be a huge load for one person.

I hope that this new doctor will be the one that will figure this all out for you. I do hope and pray that you get an answer sooner rather than later. Hang in there....you'll be in my prayers.

Fondly,

Lori :P

p.s. I love the picture of you and your husband on your honeymoon in Jamaica. The place you're standing on the steps is gorgeous! Was that a resort you stayed at? My husband and I went to Jamaica last June for our 25th anniversary, and I fell in love with it. Can't wait to go back. :D

Danica01
02-09-2009, 11:13 PM
Rastagirl,

I could not have said it better. You are right, our loved ones suffer just as much as we do by just watching and feeling so helpless because there really is not much they can do. Life is hard even when you travel the road with your best friend. I think we sometimes forget to thank them or check in with them about how they are dealing with things. We have suffered horribly during this economic crisis. We are loosing our home due to the fact that we have both been laid off and can not find steady work anywhere. The hardest part is hearing Tim talk about how bad he feels because nothing is stable in our lives right now and he knows all of this stress can cause me to feel yucky. I always tell him that we can deal with that but I can not deal with him carrying this stress by himself. You are a team with your loved one and it is hard for everyone. Your post was very beautiful and it made me tell Tim how much I love him and that I am so proud of the person he is. Thank you
:wink:

Danica

Angel Oliver
02-10-2009, 04:37 AM
Sending you all gentle hugs and what lovely words on this thread. Im thinking of you all.


Love
Angel.xx

Spanglishqueen
02-10-2009, 05:06 PM
Thank you all for your support :!: I am hoping all the blood work proves her theory and then we can rule out Lupus and move on to the next step. The sleep study was scheduled by my PCP prior to me seeing her because of the fatigue and daytime sleep driving :D Same reason for the neurologist. When I saw the sleep doctor he said there is a 90% chance it is sleep apnea, but that doesn't mean I don't have something else wrong. One thing she said is that the ANA and SCL blood work means I am more susceptible to Lupus or AI, but I don't have it now. At least they are trying to rule things out I guess its one step in the right direction. :) Later last night Hubby and I had a talk and we shared our feelings and fear so we are now ready to start all over again. It was cute he said jokingly "we need to find a new body to put your brain in" and I said why not just get a new body he said "because I like you" :oops: :lol: He's a great man and I am glad he's traveling this road with me.




p.s. I love the picture of you and your husband on your honeymoon in Jamaica. The place you're standing on the steps is gorgeous! Was that a resort you stayed at? My husband and I went to Jamaica last June for our 25th anniversary, and I fell in love with it. Can't wait to go back. :D

We went to Montego Bay and stayed at the Sandals Royal Caribbean. The picture was taken at some haunted hotel they have over there. Awesome time loved Jamaica.

Danica01
02-11-2009, 12:23 AM
You comment about your hubby brought tears to my eyes, not sad tears but tears of joy! It just makes me realize how blessed I am to have some one walk along side me on this bumpy road called life. Love really does conquer all. Our loved ones can not cure our Lupus but they can restore our hearts, souls and the fight inside of us. We could not make it with out them all.



Thank you all for your support :!: I am hoping all the blood work proves her theory and then we can rule out Lupus and move on to the next step. The sleep study was scheduled by my PCP prior to me seeing her because of the fatigue and daytime sleep driving :D Same reason for the neurologist. When I saw the sleep doctor he said there is a 90% chance it is sleep apnea, but that doesn't mean I don't have something else wrong. One thing she said is that the ANA and SCL blood work means I am more susceptible to Lupus or AI, but I don't have it now. At least they are trying to rule things out I guess its one step in the right direction. :) Later last night Hubby and I had a talk and we shared our feelings and fear so we are now ready to start all over again. It was cute he said jokingly "we need to find a new body to put your brain in" and I said why not just get a new body he said "because I like you" :oops: :lol: He's a great man and I am glad he's traveling this road with me.




p.s. I love the picture of you and your husband on your honeymoon in Jamaica. The place you're standing on the steps is gorgeous! Was that a resort you stayed at? My husband and I went to Jamaica last June for our 25th anniversary, and I fell in love with it. Can't wait to go back. :D

We went to Montego Bay and stayed at the Sandals Royal Caribbean. The picture was taken at some haunted hotel they have over there. Awesome time loved Jamaica.