[lizzymiya]

Hi everyone, I am sorry to come in and rant! I was DX in june of this year with SLE and Fibro, and my rhemy has been good to me so I thought.

However I am a tough treat because of my lumbar shunt for the intercrainial hypertension and pseudotumor ceribri but I have been able to take the lupus meds and the 10mg pred. for the last 3 months. HOWEVER I went to him last week on a monday and told him that I was not feeling like myself and that I was having my legs cramp and they were very painful. He said I needed to call my neruo about it and he said it sounded like Fibro!!! I looked at him and said "you DX me with FIBRO."..."so why can't you do something about it"!! He looked at me and said "I'll send you for some blood work" I left his office upset with no help.

Later this past week on thurs. my lymph nodes in my neck swelled up to where I couldn't even swollow! I went to see my PCP and she thought I have MONO. The test came back neg. My strep. test came back neg. also. So they sent me home. Friday came around and I started getting pain in my stomach and it started swelling. I also got a statement in the mail from my Rhemy with the results of my blood tests and a note saying I need to call my PCP and let them know I have a low hematocrit/Hemoglobin, but my SED rate looked ok and he would see me at our next apt. Well I call my PCP and I tell them about my blood count and I also tell them about my stomach and my neck still hurting...and they said it must be a bug going around!

Well I couldn't take it any more by Sat. night I ended up in the ER and the sent me to a bigger hospital in my town that did a MRI of my whole body. When we got the results back they said I have fluid coming from the Lymph nodes and they were inflammed and swollen. Also my heart rate was 115 a min. my temp was 99.9 . They took some blood and my white blood count was ok however my C- reactive protein was 2.08 (they said that was high) Because this hospital does not speacialize in lupus they didnt know what to do for me but send me home with pain meds. ( military hospital)

I called my Rhemy today to follow up with him and let him know what was going on and he told me to just fax him the blood work and the copy of the MRI and he would see me on my next apt!!! That was it!!! He didn't seem to care I was still in pain! That I have a swollen stomach! NOTHING!! I know I am new to all this lupus stuff but I dont go back to see him till the end of NOVEMBER! Am I overreacting?

I know this has been a big rant, I cant sleep, I have been running fevers off and on and I don't know what to do....any thoughts?

Best wishes to all,
Heidi

 

[LolaLola]

Hello Heidi,
At the beginning of Lupus treatment things do seem to go very slowly. It is also a horrible feeling that you are "cast off" by these Doctors without a safety net.
I hope you soon get over the infection.You deserve better support.
x Lola

 

[helloos]

I would be somewhat concerned about the lymph nodes leaking and being swollen. I think that you should not wait for your next appointment and maybe say " I cannot wait until my next appointment, I need to come in now" or having someone close to you make some calls for you.

Also if you are in that much pain, that alone warrants a visit and your stomache being swollen. Can your gp help you out at all?

I think you cannot wait until November and you need someone to help you out now......

See if you can do something to get in there and let us know how you are.

Hope you feel better and are able to get an earlier appointment.

 

[Jirel]

Do you have any other choices for a Rheumy? I know I am spoiled because mine is so good, but really - if I called her right now and let her know that I had to go off the Lyrica and I'm in pain she would make an appt for me immediately, just because I hurt, let alone any other symptoms. Its MY choice to try and tough it out another 2 weeks to my next appt. But then I think I have one of the best around - which sucks in a way because I would have loved to move north to get out of the heat. LOL!

 

[lizzymiya]

Thank you everyone who has replied! I have not had any luck getting my Rheumy to call me back, nor have I had any luck getting my PCP (GP) to call me back for an apt. I am going to have my husband call tomorrow due to that fact I have been in bed since this weekend and I am not feeling any better. I am going to also have him call and place a compliant with our Military insurance company tricare in ref. to the Rheumy and see about getting another one. I hope I am making the right decision. I have never felt this bad in my life. Again thank you to all of you! Have a wonderful night. ~ Heidi

 

[buffster]

You poor thing (((hugs))) I am moderately new to this stuff but can't your dr/pcp give you an antibiotic or something as it sounds to me like your lymph nodes are infected?? Are you taking any inflammatories either as they may help??? I would def kick up a HUGE fuss as this care is well below acceptable and they should be listening and helping - good luck and I hope it gets better soon xxx

 

[LolaLola]

Heidi, I am pleased you sound as if you have come back fighting. Well Done. We are all here for you.
x Lola

 

[lizzymiya]

You poor thing (((hugs))) I am moderately new to this stuff but can't your dr/pcp give you an antibiotic or something as it sounds to me like your lymph nodes are infected?? Are you taking any inflammatories either as they may help??? I would def kick up a HUGE fuss as this care is well below acceptable and they should be listening and helping - good luck and I hope it gets better soon xxx

Well today I was sent to "internal medicine" at the hospital and the doctor I saw today was very nice and she said and demanded that I get a new Rheumy. She is personally calling the insurance company and dealing with it tomorrow, also making a complaint against the doctor. However, in ref. to your question about the inflammatories, I am unable to take them due to my psuedotumor ceribri/ intercrainial hypertension. When I take them or use them too often even for a short period of time I get something called a "rebound spinal headache". If anyone here has ever had a LP and had a low pressure headache and had to have a bloodpatch...well thats what it feels like when I take those types of meds. I was put on a antibiotic today! I will be on them for 10 days and after that I will have a full body CT scan to check the lymph nodes and see how they are doing and see if the antibiotics worked. I feel a bit more possitive today then I did in the first of the week. This doctor is also sending me to another specialist which I can't even at this moment begin to spell but this doctor is going to help the lupus doctor. So like I said before I am staying possitive!

Again everyone thank you so very much! Each and everyone of you have been so kind! **BIG HUGS**:wink2:

 

[lazylegs]

Hello Heidi,

I am glad you found a doctor that finally sat up and took notice. Hopefully your health care will improve from here on out.

Hope you feel better soon.

Take care,
Lazylegs

 

[onetay]

Sometimes I think we are teaching the doctors with this disease. It is different for everyone and some of us have the same problems. I have gotten use to what I call this is not my field answer. Also you might want to get use to the on and off fever that is part of the lupus for most. My best advice to you is to educate yourself,pay close attention to your body and what is normal for you. It may take awhile but keep pushing if you feel something is wrong and let them know that you want the answer, it may take time and tests, but stay on them.
Best wishes to you
onetay