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Hello,



I am a 54 year old women with two grown children and three grandchildren.

I retired up north Michigan two years ago in my dream home. It is all woods and across the street is all state land. I have three dogs and we go walking all the time in the woods. Not so much lately.



This is my story. In 2004 I was dx with Hep C, I did the standard treatment for it. Interferon shots and Ribiviran pills daily. It is now in remission. In 2005 I had a tooth that felt as though it was going to need a root canal. When I was sent to a root canal specialist, while in his chair he asked me if I had Lupus.

I asked him why he asked me that. He said that his mother in-law had it and that she had the same butterfly rash. I went to my GP and she ran the test for Lupus and other test. It came back positive along with RA positive. I thought I had drug induced Lupus, however, after reading up on it is should go away weeks or months after you stop the meds.



She then sent me to a Rheumatologist. She ran test and said It was mild.She then put me on Plaqunil. After all the specialist she sent me to I had to change to a HMO plan. I was going broke with co-pays. I then changed Rheumatologist. The new one said he was not convinced I had Lupus. So I went off the meds.



Now I have moved Up North Michigan where the only insurance I can have is traditional BC/.BS. I have to pay 75 dollars per visit to GP.

I got sick right after new years with a bad cough, I laid in bed for four days till I figured I should go to ER. When I got there my ox gen level was 80% and they admitted me in hosp. They did a CT scan of lungs and found I had pneumoniaia.



I had a CT scan of the brain and the tooth that years later is giving me trouble. I have had two root canals and a years worth oabscesseses on and off. My GP calls the next day and tells me to take aaspirinin every day and told me I needed to see neurologistst because the saw I had a TIA.

Then she calls the next day to tell me I need to see a Ear nose and throat specialisbecauseue the scan on my tooth showed I have sinusitisis and deveated spectrum.



Also she wants me to see a Rheumatologistst and a Pulmonary specialist.



My hip has been swollen for three years now and my knee is bummed out and I have bad headaches and night sweats all the time. I have no getty up in my step.Also I have a hard time starting to urinate. Sometimes I have to turn the water on to get the flow going, it's driving me nuts. Speaking of nuts I told my Mother in law some months ago that I felt so depressed and didn't know why. The rash on my face has come back also.



It is so nice to have a place to go to look up information and talk with others that know what I am going through and not think I am crazy. It will be great to get to know everyone.



Amos
 

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Sounds like you've really been through the mill the last few years. It's so frustrating when doctor's change your diagnosis - did your last rheumy have the information from earlier blood test results when she took you off medication? Have you gotten worse since going off lupus meds? If so, I have to think it's in your best interest to find another doctor and get another opinion or speak very frankly with your last rheumy about going back on Plaquenil. It really is a safe medication to take, and even if she isn't sure, it very well may be better to try you out on it than leave you completely untreated. Because clearly something is wrong with you and you need treatment! A lupus diagnosis is not given lightly, so I have to believe your prior doctor had good reason to diagnose it and commence treatment.

I would also try to get past copies of blood test results is possible, then you will know what was run and what the results were and can take that with you to future appointments as well. It might give you more motivation to get help as well...

I'm sure your dogs miss their walks with you - I hope you are able to get back on medication and will improve enough to enjoy your dream house. Take care and post any questions you may have.
 

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Hi Amos

Its nice to meet you. Your dream home sounds wonderful :)

Maia has already given you some good advice and I would just like to encourage you to get another opinion. Do let us know how you are getting on with it.

In the meantime, welcome here and I look forward to getting to know you.

Take care for now
Joan:rose:
 

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The Other Illinois Tammy
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Amos,
Welcome hope you find what you are looking for here, I know I did and more. It sounds very much like you have been through it all in the past couple years. It is sad that this disease eats peoples savings up and that insurance is not more readily available for lupus patients as the doctor visits and meds are very high. Most rhuemies can treat lupus but it is best to find one that has the education and back round in the field. The general public sees us non disabled because of a lack of a more physical looking disease, and most could care less to hear of the pain that comes with lupus. Here we are just glad to find someone that is very much like us that we talk to and every can relate to what you post thank goodness. I have never been in a place were the people are more diverse, but yet the same. There are some things you can try for the legs like heat, hot shower or bath. If you have swelling like most of us do rest is important. We all have good and bad days it is just our good days are what most would call their bad ones lol.

Glad to have you hear and hope to chat with you in the chat room soon. Wishes you some relief soon.
Tammy
 

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Hi Amos, and welcome. You have been given great advice by the moderators and they are doing what is best for you.

I understand about missing walks with your dogs. I have 3 mini dachsies right now, 2 are fosters and 1 is mine. I would miss having them around horribly. Animals can be great companions, and care takers. Mine are very in tune with my up and down days.

Take your health issues one step at a time. Otherwise it will be too overwhelming. It may take time go get all sorted out, and on the days when you feel horrid it is hard to push on. That is where we come in.....we are here for support and possible ideas or experiences with some of the things you may be battling.
Sally
 
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