Another Skin Biopsy Performed! NEED HELP WITH NEW RESULTS (:

General
1

Hi everyone! I hope you all are doing well!

I was diagnosed with Systemic Lupus. I had all the tests done. The ANA, Anti DNS ds were positive. My first skin biopsy was also positive. It said that the histological findings were compatible for lupus. And the differential diagnoses was Dermatomyositis! So they started me on plaquinil first. I took it about a year with no such luck. Then the Dr I was seeing left the clinic I was going to. So I went in for an appointment and had to see a new dr. This dr was rude, ugly, and just simply in a dang hurry. I filed a complaint with the hospital on him. After all that they brought in another dr. Now mind you all these doctors im seeing at LSU are like interns, they are learning doctors that don't have any experience! Anyway a few weeks ago this new dr wanted to retest everything, start all over again. Imagine my happiness about that ): She tested for just about everything and also another skin biopsy. She did a bigger punch this time though. And she said she wanted to check and see if they could send it somewhere that did another type of testing on it. One that is more trustworthy I guess. Late Thursday evening I received a phone call from this doctors nurse telling me the dr wants me back in there this week for more blood tests! I asked her why and of course she didn't know! I went Friday morning and gave more blood. While I was there I went to records and picked up copies of the other blood work and biopsy. Im gonna list off some of them to see what yall think, cause im kinda lost! There is 15 pages of results here so don't think I will be able to list them all, lol!

RESULTS FROM SKIN BIOPSY:

FINAL DIAGNOSIS

GROSS & MICROSCOPIC:

SKIN, LRFT UPPER EXTREMITY, EXCISIONAL BIOPSY:

-Skin with papillary epithelial hyperplasia and dermal fibrosis.

That was it. There was no differential diagnosis listed like on the first biopsy. It didn't say anything about maybe getting further testing like the first one either. The readings are different than the other one as well.

So next im gonna list a few of the flagged results from the blood work.

C-Reactive Protein - 5.72 reference range <0.90

ESR - 41 reference range 0-20

CK - 416 reference range <190

BUN - >5 reference range 7-25

GLOBULIN - 3.7 reference range 2.3-3.5

RBC COUNT -3.93 reference range 4.00-5.20

HEMAGLOBIN -10.3 reference range 12.0-16.0

HEMATOCRIT - 30.6 reference range 35.0-46.0

MCV - 78.0 reference range 80.0-100.0

RDW -17.8 reference range 11.5-14.5

ANTI DNA DS 5 reference range Negative <5

Equivocal 5-9

Positive >9

My ANA come back negative this time

And to my surprise my thyroid readings are finally normal-YAY!

I hope somebody can look thru this and give me some sort of insight! Thanks in advance for ur help(:

2

Well you are anemic- that is for sure but the rest you would need to discuss with your doctor who will review in the face of all the other results

3

Thank you poobie for your reply (: Which test result tells me im anemic, and is it a test that can let me know which kind of anemia it is?

poobie said:

Well you are anemic- that is for sure but the rest you would need to discuss with your doctor who will review in the face of all the other results

4

The c-reactive protein could mean a inflammation process is going on in you body, however, you need to talk to the doctor about the rest. There could be different reasons why your Anti DNA DS and your ANA are negative. Just a suggestion about the skin problem. Please ask the doctor to take another biopsy and have them run a test called immuno-florencent studies. This is a special test wherein they stain the biopsy and look at it under ultraviolet lights to rule out cutaneous (skin) lupus. There are five different types of skin lupus so they need to narrow it down or rule it out. However most are teated the same.

I have SLE with negative blood work and Tumid Lupus which is one of the rare types of skin lupus. Good luck and if you have any questions about what I have typed out for you please just let me know.

Deenie

5


Thank you so much Deenie! Can you tell me a little more about the Tumid Lupus? I would appreciate it (:


Dewing3569 said:

The c-reactive protein could mean a inflammation process is going on in you body, however, you need to talk to the doctor about the rest. There could be different reasons why your Anti DNA DS and your ANA are negative. Just a suggestion about the skin problem. Please ask the doctor to take another biopsy and have them run a test called immuno-florencent studies. This is a special test wherein they stain the biopsy and look at it under ultraviolet lights to rule out cutaneous (skin) lupus. There are five different types of skin lupus so they need to narrow it down or rule it out. However most are teated the same.

I have SLE with negative blood work and Tumid Lupus which is one of the rare types of skin lupus. Good luck and if you have any questions about what I have typed out for you please just let me know.

Deenie
6

you said you were ana negative this time, what was the reading for the first time for ana when it was positive? you def having inflammation in the body,ERS and CRP, your biopsy is consistent with possible lupus of skin, and you have really high CK lab, which monitors your muscles. Could also just be a reaction from a virus for instance but in lupus patients it can rise do to muscle inflammation. It can also mean thyroid problems. I see thyroid came out normal this time. The problem with the labs and autoimmune diseases is labs can only tell so much. You have to go with the symptoms and there are pages of other labs that would single out which diseases were ruled out. The good news is you have an extensive list of labs that have been taken, and that was the best possible approach. Many people get misdiagnosed for years and it is wise to start all over with the blood work. It takes a very good diagnostic rheumatologist to see the entire picture and put it all together.

7

Nikki

Not sure what you would like to know about tumid lupus, but here it goes! It is a rash that can appear anywhere on my body! It looks like flea bites and itchies like crazy for a few days. It is usually accompanied with swollen and painful joints. Low grade fever and fatigue. Tumid lupus doesn’t leave scars, so I am one of the fortunate lupies. Sometimes the red bumps or the rash appear in the same place over and over again. I have three spots that appear on my face again and again. The areas where the rash starts are usually very warm and sore to touch.

A note about the immuno florcensce studies! They are done by a speciality lab, not usually a in house thing. I had three biopsies done over a three year period, all come back positive for tumid lupus.

Wishing all the best! I am here if you need anything else!

Deenie

8

Nikki

I also suffer with thyroid disease. I had nine lesions on my thyroid over a four year period with three negative biopsies. My thyroid was removed, as well as a sub sternal goiter. I never tested positive for thyroid disease in any blood work until my thyroid was removed. LOL! My body seems to run as if I am normal with blood work. It’s happens over and over again! I only have had one negative ANA. You can get a rash from thyroid disease also.

Deenie

9

LUPIE- Hi (: The first couple ANA I had were positive but I don't know what the readings were. all they said was positive, ive also had a positive anti dna ds but this one come out equivocal,like indeterminate not negative. I think the doc is thinking about the dermatomyosityis diagnoses. and that's why when she seen the first blood work she called me back in asap for emergency blood work. the tests that she tested for would tell her if it is Dermatomyositis from what ive researched about the types of tests she ordered. one was anti jo1 antibody and another was a smooth muscle tests and 2 more I cant think of what they were called. Thank u for your time (:

Lupie said:

you said you were ana negative this time, what was the reading for the first time for ana when it was positive? you def having inflammation in the body,ERS and CRP, your biopsy is consistent with possible lupus of skin, and you have really high CK lab, which monitors your muscles. Could also just be a reaction from a virus for instance but in lupus patients it can rise do to muscle inflammation. It can also mean thyroid problems. I see thyroid came out normal this time. The problem with the labs and autoimmune diseases is labs can only tell so much. You have to go with the symptoms and there are pages of other labs that would single out which diseases were ruled out. The good news is you have an extensive list of labs that have been taken, and that was the best possible approach. Many people get misdiagnosed for years and it is wise to start all over with the blood work. It takes a very good diagnostic rheumatologist to see the entire picture and put it all together.