SCARED, CONFUSED and Depressed! - Fibromyalgia Message Board

mermaid1025 · 08-26-2005, 01:44 PM

8-26-05

Hello,
This is a 25 year old woman who is just plain exhausted with all of my old and 'new' symptoms! I was told bye many to visit the Fibro Site due to my symptoms being very simaler! I have also been told by a Doc that It could be Fibro! Last year around this time, I was at work and theLeft side of my face went numb and tingeling! Where my Trigmenal nerve is, which I was told I was going to have a 'Shingle' outbreak...never happend! So then they did a MRI with the dye becuase I was having other 'things' happen a couple of months before the numbness, stuff such as My left foot not picking up, I would get these tics in my neck which would come and go! The MRI was done on my brain and spinal cord, they found nothing, infact they said there was nothing to be concerned about and ruled out possible MS!
After that, I began to devolpe coin like lesions around my jaw line, it looked as though someone burned me with a coin and they itched and would hurt with somtimes tingleing! I went to a derm who said it was 'Roscea!'
I began to have pain behind my knee caps and muscle innflammtion in the left leg the area above the knee!
I then began to expereince 'muscle weakness' in my legs! It felt like my legs were shaking! I was tested for Lupus and came up postive with a ANA test
1:216, however you have to have 2 postive ANA test before getting a offical DX! So I had a second test, which was negative, so back to square one!

I have had continued leg weakness for over 7 months which comes and goes, some days I will be fine and then another couple of days, they will be weak! I have had a lot of muscle innflamtion in the muscles above the knees and to the sides of my outer thighs, it really hurts when you touch it!
I also have had horrible swollen glands behind my ears and in my neck, they will go down and then leave these tiny hard knots!
In the last 2 weeks, I have been experiencing 'Charlie horses' or tightness in my calves that will last all day!
I have been very upset and disturbed by all this! I have seen 7 docs total, 2 neuro's 4 Im's, Opthamologist who says I have perfect optic nerves and countless ER doc's!
Im just plain exhausted, mad, angry and so very confused! I feel as though I want to scream,!feel as though no one is listening!
So here I am trying to see if it is possible Fibro! Anyone have the same sympotoms!
Also I was put onto Prednisone for 1 week, the weakness stopped.

take care
mermaid1025

Glojer · 08-26-2005, 06:34 PM

Mermaid you need to check out the lupus board and look at the sticky posts and search for posts on skin problems or just ask for Veej to give you info on SCLE or other lupus skin problems. There is such a thing as negative ANA lupus I have had one positive ANA and the rest negative while on meds. There are many other blood tests that should be done not just ANA to determine lupus. The coin shaped lesions are a giveaway.

Fibro is also an overlap disease with lupus, you could have both and that is why your muscles hurt, joint pain is also part of lupus and fibro. I know it is hard to continue to see new docs, but if you could find a good rhuematologist maybe one at a university hospital that would be helpful. Getting a lupus diagnosis can take years many of us are in the process right now and fibro can sometimes be as difficult. Oh, and a dermapathologist would be a good doc for you to see also.

Are you taking any meds now, even without a confirmed diagnosis of any disease the docs should be able to give you some pain relief. I finally started on prednisone in a small dose and that has done wonders. Many people with lupus and RA take plaquenil and that works great for them (didn't work so well for me). Hope this helps, keep us posted on how you are doing Good Luck!

Glojer