Revision THR Nanamac's story - Part 2

[nanamac]

Re: This is my story

Yes, I know, He is in Boston today, and the online results say my labs won't be available until 9/8. I know he will call me as soon as he has them.

He will probably discuss them with my GP first, so I think this is normal waiting time...

 

[Jamie]

Re: This is my story

That makes sense then. The online date is probably the best thing to go by.

 

[nanamac]

Re: This is my story

I think everyone (including me) forgot about the holiday...

 

[Suzieslips]

Re: This is my story

Janet, I'm so sorry you are going through all this. And now the wait is longer than expected. Must be agony.
I'm one of those people who hate waiting around for results and get really stressed the longer I wait.
Think I would have drunk more than a bottle of wine by now!
Wishing for GOOD NEWS and a resolution to this ongoing list of problems for you.

Suzy

 

[nanamac]

Re: This is my story

Should I just end this thread Jo/Jamie? Although it did start out as my "Hip" story, it has turned into a soap opera. I am so sorry to be wasting space on here.

I wonder though if something physiologically got messed up when I had the THR to begin with? I really haven't been right since...coincidental, I supppose....

Have to say I would miss all of you guys. Hip or not, you are my support system...

 

[sweetcaroline]

Re: This is my story

Oh, Janet.......your story is NOT a waste of space! This is what were are here for! You have supported so many of us and now we want to support you!! :grouphug2:

 

[Jamie]

Re: This is my story

No, Janet....no reason at all to end your thread. You still have unresolved issues that may or may not be related to your original surgery. You and your many friends are comfortable here......just leave things as they are.

 

[Josephine]

Re: This is my story

Good heavens, whatever for? What about Sonja's thread? That got so long (1,000 posts) it was split!
Or Big Gene's? Or mine? :th_heehee: They go on and on without end! No problems.

 

[nanamac]

Re: This is my story

So I got out of bed at 6am this morning to get on the laptop and read my lab results...NORMAL! What is going on here? The ESR was 55 last week and 20 this week. I just don't get it...

There are still others pending for tomorrow, but whether the Rheumatologist has access to those today, I don't know. I am still in so much pain it is crazy...and from what?

Hope I hear something today...

 

[nanamac]

Re: This is my story

Just an added thought...I must admit that I've been having a terrible time with "Brain Fog" for a few weeks ever since all these other symptoms started. I start to write in someone's thread and erase it!

So I apologize for not being as supportive as I would like. Hopefully that too starts to subside along with the pain. This is the craziest bunch of symptoms I have ever had...

The strangest symptom of all is the snapping/popping of my feet, ankles and knees. Has anyone else ever experienced this? I swear the Prednisone is the reason I am going through all of this...

Just looking for answers any and everywhere. Even "Googling" isn't very helpful for this...

 

[Renate]

Re: This is my story

Janet, I'm thinking of you. Don't get discouraged now. I believe it takes a good specialist and many tests to come up with a correct diagnosis. Autoimmune diseases are not easy to diagnose.

 

[Jaycey]

Re: This is my story

Janet (she says very sternly) don't even think about ending this or any other thread! You stick with us and we will all get through this with you!

Don't worry about how much support you can offer others now. You have plenty to deal with at home and there will come a time when you will be back on the board.

Take care my friend!

 

[forbesy]

Re: This is my story

Janet

Isn't it just ironic when you are craving for normal results and you get one your still not happy.
if nothing shows with the rest of the results then surely they will have to get you back in for other tests until they find the root of the problem.
Don't dream of ending your thread we are all still here for you and all the way form rainy scotland. :DOH:
Lets hope we can find out what is causing this problem with the remaining tests.
Chin up Janet you will get there.

 

[Suzieslips]

Re: This is my story

Janet,
Forbesy said just what I was going to say.

And PLEASE don't go and disappear (unless that's the way you feel and then we'll understand). It's not just the case that we are all routing for you (which we are). We would also be worried if you suddenly didn't update.

You were one of the first to respond to my thread.
You have continued to give me support and encouragement which is great.
We may never meet, but I consider you a friend.
If you comment on my thread it's great, but if you don't, I certainly won't think badly of you.
Friendship isn't about that.

I am really, really hopng that all your lab results are good (either normal, like this one, or providing the answer to your pain and being good at the same time).

So I'll be checking in tomorrow and trying my very best to give you support all the way through your ordeal and beyond.

Suzie

 

[nanamac]

Re: This is my story

Oh Forbesy & Suzie. I wasn't going away...for good :hate-shocked:! Heaven forbid! I just didn't want to take away from"Hippie" problems! Yes, I have been isolating and that is what I really want to do.

And I also know I am depressed from pain and not getting any answers, and that isolating is not a good thing to do. I just feel kind of defeated. If I felt good, it would be easy to make another appointment elsewhere and start over.

I haven't even been able to get back to the new OS for the EMG as I was hospitalized with the darn fever, etc, and really haven't been well since, in one way or another. I am drained physically and emotionally right now.

Yes, Forbesy, we do want good results when we are feeling well, but when we are sick, we want answers, one way or the other. The answers I'm getting now are contradictory from a weeks ago.

If in fact this is a autoimmune disease, there are plenty to choose from. I have been reading up and don't have all the symptoms for any and a lot of a few. SO the Rheumatologist is probably stummped as well.

I did sent him an email earlier today so he is aware of how anxiously :DOH:I am awaiting an answer. I am still a bit PO'd at my GP so I have decided it best to keep my distance from her :th_heehee:...she probably feels the same.

Well ok then, the soap opera will continue! I can't seem to make it very amusing at the moment...I don't have it in me. Thanks again for all the support. Fingers crossed for an answer that can be remidied tomorrow. :prayer1::prayer1::prayer1:. :grouphug2:

 

[JennyAWX]

Re: This is my story

Janet,

I'm not a medical profesional but here's a thought.

Have you been tested for prednisone induced diabetes? It is supposed to go away after the med is stopped but can often remain in the system. My mother developed this as soon as she started prednisone and has many of the same symptoms that you have.

I really hope you feel better soon.

Jenny

 

[Phillygirl]

Re: This is my story

Just wanted you to know I have been praying for you. Again it is very hard not to know what you are dealing with. I am not a doctor but I do know autoimmunes can have periods of flares and then nothing which is another reason they are so hard to diagnose. ESR results can be skewed by steroids. Your Rheumatoligist would be aware of all this. I hope you get good news soon.:prayer1::grouphug2:

 

[lisanewmc]

Re: This is my story

Thinking of you still. Please don't feel that you have to make your 'soap opera.......amusing' . And yes, it is easier to withdraw when depression kicks in but that's the time you need the support from your friends ((((hugs))))

 

[nanamac]

Re: This is my story

So the verdict is....everything is NORMAL! Not normal that I am in sooooo much pain, but today, nomal on ALL the lab results :DOH:! And Thank GOD for that!

What he wants me to do is call the Pain Clinic that I went to before, make an appointment with the specialist there that I couldn't get an appointment with months ago , and schedule an appointment with him.

He will then call the guy, get my appointment moved to ASAP, and have a conference call with both of us on that day. He said there is a Lidocaine drip that I can be given so that I can lead a normal life while he gets a diagnoses for whatever is going on.

I asked him about changing health care systems all together and starting fresh elsewhere and he said if he thought anywhere in Boston could be doing more he would recommed that.

He IS a Boston doctor and is stumped by this, as is my GP, NP, and endo guy. So, I agreed to go along with this, let him keep researching the symptoms and hope that the medication/IV offers relief.

He absolutely disagreed with an FM diagnosis as yes, I have some symptoms, but not any markers. My symptoms are: heightened sensitvity to smells and light as well as pain. But most/all of my pain is at waist level and in lower extremeties including feet. It is getting more and more difficult to walk and climb stairs. Toilets :hate-shocked:...I am going to need more handicap bars/handles very soon if this doesn't quit...

Gee, even looking back in this thread, it was only July when I was on the prednisone and feeling exact opposite of how I am now. That was the trigger, I firmly believe...

How long to get Prednisone out of your system, anyone know?

Well, that's the latest. I do feel a smidge hopeful again, and a tad less depressed. I've got to try everything at this point or pertty soon I won't be walking at all...

 

[cotton1958]

Re: This is my story

Sorry you don't have a defininte answer, but it does sound like they are trying to still keep you comfy and trying to continue to find an answer? I put a question mark at the end just to keep it open. But glad they are going to give you SOMETHING!

I did have the smell sensitivity after my knee surgery. I have never used laundry detergent w/smell since! Guessing it was the pain meds? I actually don't know.

Hoping you get relief very soon!!