got blood results today.. here goes limbo...

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New Member

Date Joined Jul 2009
Total Posts : 17
   Posted 8/11/2009 6:16 PM (GMT -6)   
I had a visit with a rhemy on the thirty first of July for the first time. I'll give the short story LOL...
about two months ago went to my doctor because of a swollen right eye and bad whelp type rash all over both arms. He ran alot of blood test and came back with a postive ANA. I have had extreme fatigue, all joints in both wrists, both ankles, both elbows, both knees, and every bone in my foot inflamed. They are still inflamed after steriod treatments. I have major pain some days and some days it's not as bad. Big time stiffiness for few hours in the mornings, headaches, a know a swollen tear duct in right eye. I am only on Tramadol at the moment. At first it helped the pain alot but now it just takes the edge off.
Anyways, my doctor sent me to a dermatologist to see about the whelp rashish stuff on arms. He told me to stay out of the sun because I had been going to the tanning bed and he felt the sun could make it worse if it were lupus. I have a faint butterfly type rash on face but nothing really alarming. The dermatologist told me a classic text book case of sle. He was certain. Said he could have gave me diagnosis long time ago blah blah blah... Two weeks later I go back to get stitches out and he said results show it was not lupus it was granuloma annular. He said no cure, its autoimmune similar but not related to sle. He said I still had lupus in his opinion. Okay now to the rhemy appointment. He did all the little excerises and ask all the questions. Did alot of blood work and said he would call in a few weeks. He said he was leaning more toward mixed connective tissue than sle. Anyways after ten days I hadn't heard anything so I called this morning. The nurse said that the ana screening tool they use for Lupus has came back positive twice but the antinuclear or whatever tests show negative. My vitamin D level is good. My white blood count is low. She said usually it's elevated in lupus and other connective tissue disease. So for the time being they will need to keep checking blood reguarly because even though some healthy people can have positive ana also some people can have negative antinuclear if the disease has just began. Meaning the disease hasn't progressed enough to show up in blood tests. So I am still in the same place I started. In my opinion and I'm not a doctor I just simply have rhem. arthritis and not lupus. I feel a bit down that I still don't know what is making me have all this pain and making me on some days unable to walk. She said come in to see the doctor on September the 9th. I am thirty four and this inflamamtion started back in June. She said alot of times it takes a while for the disease to progress enough to put a diagnosis on it. I think this is all so crazy though. I think it's sad I have to sit back and wait for damage to be done to the body in some way to know something. It's like them saying wait until your joints start to wear away and then we will give treatment but at the same time I understand i can't just take meds that I could end up taking for no reason. When I go back in September I hope this time he elaborates more. He didn't give me a chance to tell him about my symptoms. When I got there I handed the nurse the whole stack of papers they had me feel out but he didn't even look at them he just looked at the referrel. I will tell him this time around though. I just didn't want it to seem like I knew more than him LOL. But some days my blood veins in legs and feet are huge and swollen. He wouldn't even look at the knot in my eye or anything... This time I am going to tell him I want him to consider these things to see if it can help. thanks for listening please share opinons.

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 8/11/2009 6:34 PM (GMT -6)   
The next time you go in, hand the doctor a typed list of symptoms, copies of your blood work, and names of any scripts you take. Don't let the doctor run the whole appointment without giving you a chance to talk.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 8/11/2009 6:48 PM (GMT -6)   
If the doctor fails to allow you to tell him what is going on with you a second time I suggest a second opinion. Simply put when a doc tor doesn't listen to the patient it is time for the patient to find a new doctor or risk substandard or incorrect care.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar

New Member

Date Joined Jul 2009
Total Posts : 17
   Posted 8/11/2009 8:31 PM (GMT -6)   
Thanks.. I was thinking the same exact thing. The first visit took about two hours and I didn't want to make a judgement just on the first one but the second will be another story. If he doesn't explain the results to me and what he thinks about them I will find another doctor. After filling out all that paperwork he didn't even look at it. He would talk to the nurse but not to me. He would says "Her feet, ankles, hands and wrists are detailed". He would tell her this and that and she would put into the computer. When he checked out one part of my hip and said does this hurt and I said no it hurts here he told her it doesn't hurt here or there but never said anything at all but told her what to type into computer. He only said for me to stop wearing "cute" shoes and buy me some supportive shoes to help with my feet and legs. He told me to take three pain pills instead of two on bad days and that was it. He never spoke to me. Before he came in the nurse questioned me forever and I mentioned having problems with my stomach lately. I said I hate to have to tell the doctor but since I have been on Tramodol I can't use the restroom for weeks at a time. I told her I had to take laxatives after a while because my stomach was hard and swelled and painful. She said well Dr. alasbai won't talk much about that because he doesn't like discussing that type stuff with women. She said one patient told him she had a lump in her breast and he just shoook his head no and waved his hands as in "i don't want to hear that stuff". So when I did mention it he said for me to eat vegetables. Heck I do!!! It doesn't help. I take four fiber pills a day, went and bought a veggie steamer and eat fresh vegetables by the plate full. It doesn't work. So I am willing to go once more and if he doesn't give me a chance to speak I will get another rhemy.

Regular Member

Date Joined Jul 2009
Total Posts : 42
   Posted 8/12/2009 12:03 PM (GMT -6)   
OMG! your doc wont talk about certain isues like constipation or breast lumps?I agree with the others it may be time for a second opinion I can tell my doc ANYTHING I am so sorry that you are going through this it must be so frustrating it is so important to be able to communicate with the whole team that takes care of you I hope you have better luck on your next appt please let us know how it goes best of luck too you......nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
  Never Give Up!

New Member

Date Joined Aug 2009
Total Posts : 2
   Posted 8/12/2009 3:15 PM (GMT -6)   
I hope you can find a new doc, or maybe clarify things with your new one so that you have a better relationship. It will make all the difference in the world in your treatment.

I just wanted to say I have probably had whatever this disease is for years (I call it my "mystery disease") but my rheumatologist says it's just a label and she's treating my symptoms as if I had lupus. She said it could also be Sjogren's, or both, but that the name doesn't matter, she wants me to feel well and heal, and to prevent further damage to my body. That has helped me feel like I'm not so much in limbo, which I did like you.

Wishing you the best ... it's a long process getting the right help, but you are not alone.
Dx: Fibromyalgia, Endometriosis, Kidney stones, APS, UCTD, Chronic/Acute Organizing Pneumonitis, Hashimoto's hypothyroidism, depression, anxiety, osteopenia

Meds: synthroid, cellcept (generic), prednisone, plaquenil (generic), zoloft, xanax, actonel, fish oil, vitamin D, calcium, fiber, baby aspirin

New Member

Date Joined Jul 2009
Total Posts : 17
   Posted 8/12/2009 6:37 PM (GMT -6)   
Thanks everyone. I love this forum. You guys are great. Every time I hear anything from my doctor I come here and even if I don't post I read other comments because other people have the same stories as me. It makes me feel like it's real and not in my head. Even describing the symtpoms is dead on sometimes... The other day I was talking to my husband and explaining that when I walk some days it feels like my feet are just bones. That there is nothing between the floor and the bones in my feet. Yesterday I read a post of a woman saying she felt like she was walking on bones with no padding on her feet. That was exactly what I was trying to say.
You guys have taught me alot and have answered alot of my questions.

I'm going to see how it goes September the nineth since getting a new rhemy takes four to six months around here. I'm going to see if it was just during the consulatation and he didn't want to elaborate until seeing the blood results or if that's how he operates. i will be sure to let you guys know.

WIsh you all a good day.. I pray you have many days that you are able to feel good and not be sick.. Those days are great.
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