What kind of DR should I see? (ER drs & GP stumped)

[1pageatatime]

I'm wondering if someone can help me. I've been to the ER 3 times, my GP 3 times, and hospitalized for 2days. Still no answers. The 3rd time I saw my GP, she said she was sure I have Lupus, but the next time I saw her, she said she was doubting it after reviewing some lab work. This has happened all w/I the last 6 weeks.

 

I was laying in bed one night when my upper right arm started burning- like I had a bug bite. Then it started feeling like an actual burn. About an hr later it was bothering me enough that I got up and took a look at it.

 

An inch wide red streak was coming from my armpit, traveling down my arm past the elbow. Figuring this wasn't good, my dh took me to the ER. I was dxed with Cellulitis and given antibiotics. After being sick from the antiB, I was changed to a different one.

 

Ten days later I am feeling like horrible, my arm is bruised, swollen at the elbow, and very painful. I went to see the dr standing in for my GP.

 

He sends me to the ER to have me dopplared, to see if I had a blood clot.

 

No blood clot. Blood tests are run and everything comes back normal- except one test revealed high inflammation. (?)

 

The ER dr sent me home saying I needed time to heal.

 

The next night I am in so much pain and now my armpits on BOTH sides are aching, and I have "cording" in my right arm pit. I went back to the ER. (very, very unlike me!)

 

I was told to stop the antiB as it clearly wasn't helping. (duh!) Because I am now screaming in pain, I am given morphine, which made me very sick, then I'm put through a few more tests. MRI, CatScan, more blood drawn.

 

My arm hurts so much I can't have anything touching it. I ache everywhere. Finally, after being totally stumped, they admit me to the hospital for further investigation and pain management. I was seen by a Neuro dr, with his tests coming back normal. My GP then wants me to see a Rhuematologist, but they evidently don't come to the hospital.

 

I'm sent home, with mild pain meds. still no answer. ( the red streak is no longer the issue, the swelling and pain are.)

 

Here I am few weeks later, and still not getting better. In fact, today both arms hurt, armpits ache and it is clear I have what looks like Edema in my right arm-especially around my elbow and forearm.

 

I should note that I've been doing a TON of natural, self help. Oil of Oregano, Cleavers, warmed onion on lymph nodes, gentle lymphatic massage, Ibuprofen. I also stopped eating ALL grains , dairy, and sugars.

 

My dr wants me to see the Rhuemy dr, but I'd rather drive to a larger city to see specialists. Also, this AM,mi read that people see an Orthopedic dr for Edema.

 

But what is the cause? All if this has already cost several thousands of dollars. I can't afford to waste more money seeing a dr who is going to look at me like I am a mystery dxes case.

 

I do have a history of Fibromyalgia, EBV, CMV and CFIDS.

 

I'm sorry this is so long.mive literally saved my arm all day to type all this out.

 

I'd really appreciate any thoughts or direction.

[Pink Fairy]

I wish I had some advice, but I will be thinking of you and praying for you. :grouphug:

[besroma]

I wish I had some advice, but I will be thinking of you and praying for you. :grouphug:

 

:iagree::grouphug:

[Aggie]

:grouphug::grouphug:

 

Can you see an internist?

[PollyOR]

I had to look up the abbreviations. Wow! Sounds like you have some pretty major struggles with you immune system. :grouphug::grouphug: I hope you can get some definite answers. Not knowing what is going on can be so frustrating.

[Jean in Newcastle]

I have had some similar types of inflammation problems. My internal med. doctor put me on steroids and at other times high doses of anti-inflammatories. I would want to make sure that your blood shows no infection, though. I've had cellulitis too and the thought of infection spreading through your blood stream would make me worried. I would want to rule that totally out. BTW - I have fibromyalia.

[Perry]

Possibly RSD (reflex sympathetic dystrophy, also called Complex Regional Pain Syndrome). I would try to find a neurologist or rheumatologist knowledgeable about RSD.

 

Good luck. :grouphug:

Edited May 2, 2012 by Perry

[Perry]

Possibly RSD (reflex sympathetic dystrophy). I would try to find a neurologist or rheumatologist knowledgeable about RSD.

 

Good luck. :grouphug:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004456/

[maddykate]

Could it possibly be shingles? Otherwise, I have no idea! So sorry you are in pain. :grouphug:

[nova147]

:grouphug:

 

Bumping for more advice for you!

[1pageatatime]

Jean-I was put on steroids for a week, and it helped a little.

 

It's not shingles.

 

I've been looking at the pathways of my lymph vessels along with lymph node locations. My areas of edema, swelling and pain follow this.

 

I'm in extreme pain right now in both arms, especially the right one. Also woke up this am with pain behind my knees.

[Jean in Newcastle]

Jean-I was put on steroids for a week, and it helped a little.

 

It's not shingles.

 

I've been looking at the pathways of my lymph vessels along with lymph node locations. My areas of edema, swelling and pain follow this.

 

I'm in extreme pain right now in both arms, especially the right one. Also woke up this am with pain behind my knees.

 

My answer (and that of my RN dh) is still an internal med. doctor. If you responded to the steroids, I would ask to be put back on them. Also - when I had swelling from pericarditis, I needed to take a natural supplement called curcumin (from tumeric) along with the prescription meds. I didn't get a handle on the swelling until I did.

[Rebecca VA]

A brown recluse bite? (They are serious!)

 

MRSA?

[1pageatatime]

Thank, Jean, I have a call into my GP RE seeing an internal dr. I have to admit, I'm not even sure what this type of dr does. (?)

 

Rebecca, I never had an actual bug bite, that first night it just felt like a bite. The ER dr said the Cellulitis probably started at the end if my finger, which had been slammed in the door a couple weeks before.

[lisamarie]

Are they sure that the cellulitis has completely cleared up? My DH had that 2 years ago and he was on meds for at least 2 weeks. Maybe more, but I can't remember. His leg turned bright red, edema, painful, with a fever, and the red started looking crusty (like a really bad sunburn that got leathery).

 

Did an infectious disease dr look at you in the hospital?

[prairiewindmomma]

internist or rheumy.....I'd get copies of all of your labs to have on hand to take with you. My rheumy is an excellent diagnositician, fwiw, I would choose rheumy over internist.

[1pageatatime]

No infectious disease dr has seen me.

 

I just spoke with the nurse from an internal medicine practice and she said the only difference from a GP, is they only see adults.

 

I just grabbed an opening with a rheumatologist at a teaching hospital, but the appt is 3wks from now.

 

I appreciate the help.

[Momof3littles]

I just saw you mentioned your lymph system but I was also going to ask whether they had ruled out lymphedema.

 

http://www.mayoclinic.com/health/lymphedema/DS00609/DSECTION=causes

[1pageatatime]

I have had some similar types of inflammation problems. My internal med. doctor put me on steroids and at other times high doses of anti-inflammatories. I would want to make sure that your blood shows no infection, though. I've had cellulitis too and the thought of infection spreading through your blood stream would make me worried. I would want to rule that totally out. BTW - I have fibromyalia.

 

Possibly RSD (reflex sympathetic dystrophy, also called Complex Regional Pain Syndrome). I would try to find a neurologist or rheumatologist knowledgeable about RSD.

 

Good luck. :grouphug:

 

I saw an internal medicine dr today and he is almost positive I have RSD. He is calling me tomorrow-not his nurse, but he himself.

 

The first thing he said to me was, "This is NOT in your head."

 

No kidding.

 

Walking out of his office, I felt like I just found a diamond in the rough.

 

Thanks for encouraging me to see an internist, Jean.

 

Perry-mind if I PM you next time I'm feeling a little under the weather?;)

[Jean in Newcastle]

I'm glad that you went to the doctor but I'm sorry that he thinks that you have RSD.

[Perry]

I saw an internal medicine dr today and he is almost positive I have RSD. He is calling me tomorrow-not his nurse, but he himself.

 

The first thing he said to me was, "This is NOT in your head."

 

 

I'm so glad you are getting some answers. I'm sorry that he thinks you have RSD though. That's no fun. I don't know how much time you've spent on the board, but our Impish has RSD and has been very forthcoming about her experience. She might be someone you could talk to about it.

 

Good luck. :grouphug:

[Impish]

I'm so glad you are getting some answers. I'm sorry that he thinks you have RSD though. That's no fun. I don't know how much time you've spent on the board, but our Impish has RSD and has been very forthcoming about her experience. She might be someone you could talk to about it.

 

Good luck. :grouphug:

Awwww! 'our Impish'...I feel honestly very blessed to be thought of that way, thanks Perry! :grouphug:

 

I've posted about RSD on the general board many times. You can do a search by my name, and RSD, and it'll pop up.

 

Frankly, RSD sucks. Best advice for potential recovery is to use mirror exercises, it can 'fool' your brain into thinking it's the affected arm working.

 

RSD has no 'typical' treatment. What works for one won't work for the next 20. What works for 20 won't work for 30, etc, etc, etc.

 

Prompt physical therapy is the best bet for any chance of recovery/remission. Mirror therapy is part of that, you can likely find examples of it on youtube, or by googling.