Any Thoughts or Opinions? Update Page 3, Post # 41

[honeydiane1953]

Looking for updates please!

 

[keypooh90]

Hi. I apologize for not updating earlier. I keep forgetting about this thread!

Anywho, I did go to the ER, and it was a good decision. By the time I decided to go, I couldn't walk at all. The pain was unbearably awful. My friend took me and I literally rolled out of the house in an office/desk chair and then hobbled into the car. It was ROUGH.

Turns out it was a good thing I went, and things could have been bad if I didn't so thanks for the convincing.

I've actually got several issues going on, ranging from mild to more serious. The least serious one is tarsal tunnel syndrome in both feet (like carpal tunnel...related to my past injuries), the treatment for that is special orthotics/braces, NSAIDs and cortisone shots.

I did/do have a DVT/clot in my left leg, which is the one where the swelling was/is worst, but in addition, I have acute kidney disease. Docs highly suspect/believe the DVT and kidney issues are due to Lupus. I actually suspected I had Lupus a few years ago but I was told I didn't "fit" the typical lupus patient profile.

So, I was admitted and am being treated for the kidney issue and the DVT as well as high blood pressure (never had it before but it's related to the kidneys). Hope I get out soon. Anyone have experience with Lupus?

 

[JessicaR]

Thank you for the update. Wow, so glad you went, that sounds very serious. I hope you get the medical attention you need so you can get home asap. Sorry it resulted in a hospital stay. Feel better and get well.

 

[Piper]

I have had Lupus since my early 20's (actually doctors suspect that I had it as a teen but it wasn't diagnosed until my daughter was a year old.) Unfortunately there is no "one size fits all" as far as it is concerned. What works for one will not work for another. I am 67 now (almost 68) and medicine has come so far in the years I have been dealing with it! Just follow your doctors instructions.....unfortunately most of what you hear might not apply to you. To me the main thing is to maintain a positive attitude and keep moving as much as you can!

 

[phorsenuf]

Hi. I apologize for not updating earlier. I keep forgetting about this thread!

Anywho, I did go to the ER, and it was a good decision. By the time I decided to go, I couldn't walk at all. The pain was unbearably awful. My friend took me and I literally rolled out of the house in an office/desk chair and then hobbled into the car. It was ROUGH.

Turns out it was a good thing I went, and things could have been bad if I didn't so thanks for the convincing.

I've actually got several issues going on, ranging from mild to more serious. The least serious one is tarsal tunnel syndrome in both feet (like carpal tunnel...related to my past injuries), the treatment for that is special orthotics/braces, NSAIDs and cortisone shots.

I did/do have a DVT/clot in my left leg, which is the one where the swelling was/is worst, but in addition, I have acute kidney disease. Docs highly suspect/believe the DVT and kidney issues are due to Lupus. I actually suspected I had Lupus a few years ago but I was told I didn't "fit" the typical lupus patient profile.

So, I was admitted and am being treated for the kidney issue and the DVT as well as high blood pressure (never had it before but it's related to the kidneys). Hope I get out soon. Anyone have experience with Lupus?

Wow! I'm so glad you decided to go. How long are they keeping you in the hospital? I don't have any first hand knowledge on lupus, but I'm familiar with blood clots. How are they treating that?

 

[scrapquitler]

Hi. I apologize for not updating earlier. I keep forgetting about this thread!

Anywho, I did go to the ER, and it was a good decision. By the time I decided to go, I couldn't walk at all. The pain was unbearably awful. My friend took me and I literally rolled out of the house in an office/desk chair and then hobbled into the car. It was ROUGH.

Turns out it was a good thing I went, and things could have been bad if I didn't so thanks for the convincing.

I've actually got several issues going on, ranging from mild to more serious. The least serious one is tarsal tunnel syndrome in both feet (like carpal tunnel...related to my past injuries), the treatment for that is special orthotics/braces, NSAIDs and cortisone shots.

I did/do have a DVT/clot in my left leg, which is the one where the swelling was/is worst, but in addition, I have acute kidney disease. Docs highly suspect/believe the DVT and kidney issues are due to Lupus. I actually suspected I had Lupus a few years ago but I was told I didn't "fit" the typical lupus patient profile.

So, I was admitted and am being treated for the kidney issue and the DVT as well as high blood pressure (never had it before but it's related to the kidneys). Hope I get out soon. Anyone have experience with Lupus?

I'm sorry that I don't have any advice or suggestions for you, but I'm glad that you went to the ER and I hope you get some good treatment and answers soon. Please take care of yourself (and when you get out of the hospital, go back to that clinic that you that nothing was wrong and tell them that they were wrong).'

 

[Desiree]

Sorry you are going through this. But very glad you decided to go. Do they have you on Coumadin or Lovinox? I have a blood clotting disorder called Anti-phospholipid Antibody Syndrome and am on Coumadin. I had dvts in boths legs and several clots back in 2008.

 

[LuLuO]

So glad you decided to go.

 

[shortbun]

Wow! I am so glad you finally went to the ER. You were really pushing it there for a while. So sorry your diagnosis is so serious but your symptoms were extreme for a young person and we were all afraid for you. Be sure to take notes and keep reading back to make sure everything makes sense to you. don't be afraid to ask questions. YOU are in charge of your health and the team of doctors and nurses are there to help you but YOU must be clear on everything. Too many people just trust no mistakes will be made. That trust IS a mistake-pay attention and be your own best advocate. Glad you are on the mend. Never put off seeing a doctor like that again! OK? You scared us!!!

 

[NHdisneylover]

I am so relieved that you got to the ER when you did.

I am sorry you have so many issues, and I truly hope you can get some great care now and feel much better soon.

 

[MariDisney]

Add me to the list of people so relieved that you went to the ER. I'm sorry you're dealing with so many health concerns at one time, though. Wow.

I also think when you're up to it you should provide feedback to the practitioner who told you it was nothing. What if you had listened? Thank you for reminding us that people in the medical field don't know everything, and sometimes they do make mistakes. It's always best to trust your own instincts and keep looking for answers when things don't seem right.

Wishing you a speedy recovery!

 

[I loveStitchnippyjon]

So glad you now have a proper diagnosis and are on the road to recovery!

 

[WebmasterMaryJo]

It's a good thing you went. for the pain you're going through.

 

[Sadie22]

I'm so glad you went to the hospital and are getting treated. When you return to your campus, it would be best to update your medical records with the campus health center for your own sake. The physician overseeing the nurse practitioner should be specifically made aware of the misdiagnosis.

 

[keypooh90]

Thanks for all of the kind words and support.


It's been a overwhelming few days, but I'm hanging in there.

I now have an ortho, a rheumy, and a nephrologist.

For the Tarsal Tunnel I'm getting Cortisone shots and wearing special orthotics.

The blood pressure is being treated with Avapro. For the edema due to the kidney disease I'm on IV Lasix for now but they will swap that to an oral diuretic (Spironolactone) when they are ready to discharge me.

The Lupus meds they've put me on for now (which will also treat the kidney involvement I have (Lupus Nephritis) are Plaquenil, Prednisone, and CellCept.

I hope to be home by mid week, but they want me in until the edema improves and my kidney lab values get closer to normal values.


I've definitely got a learning curve to deal with, but I'll get through it.

 

[phorsenuf]

And what have they done for the blood clot?

 

[keypooh90]

And what have they done for the blood clot?

Lovenox shots 2x day along with Coumadin. I'll be on both for the next 2-3 weeks, then for the rest of my life I'll be on the Coumadin daily. My Lupus has affected the blood/ blood vessels, so I'll be prone to clots for the rest of my life.

 

[Halloweenqueen]

I have a clotting disorder so I'm on Coumadin for life. I had two dvts and three PEs before they found it. I've been on it for five years now. Getting monthly blood checks can be a pain, but it just becomes part of your routine. I am glad you went to the hospital. It could have been so much worse. Good luck with your treatment.

 

[honeydiane1953]

I posted earlier too re getting help ASAP. What I am and we all should be is proud for taking our advice!! So many people ask an opinion or ??? then ARGUE with whatever we divulge. I will never understand this. You went had several things WRONG so u did the right thing. Lupus is so hard to "figure" out for sure ... do what the MD.s say ALL of them ya heeyah!!

 

[Nolcrest]

Just wanted to wish you well. Glad you are being taken care of and thanks for taking the time to provide an update.

You take care now.