Burning Face and Ears Sensations

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eyennyGlimmer

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DD,

I just read your post and found it interesting that your face burns and so do your ears. My face will get this sunburn sensation and my eyelids but it never turns red but it burns. I have had this for like 7 years and along with my ears. When I was sick as I mentioned with the strep throat and the herpes I was getting this feeling again in my face and ears, actually it was a week before I got sick and then it stayed around for months and then left again. What is MCTD? Is there any test I should get for my metabolic system, or is there one?

StevePaul, It is so nice to see you on here again, I hope you are doing well. I was reading your post and you stated that with PNH are nervous system is not damaged but dysfunctional. Now if this was caused by a Virus I am thinking that are nervous system would be damaged, so maybe a virus is not the cause. I think this because I look at other diseases and most of them cause the nervous system to be damaged. I am not saying you think it is a virus or anything like that, just your comment got me thinking.

Does anyone know if there is or where someone is researching this in the US? I would jump at the chance to be a guinee pig :p ..Jenn
 
MCTD is Mixed Connective tissue Disease. Also know as
Undifferentiated CTD. Lupus, rheumatoid arthritis, scleroderma, polomyositis, and dermatomyositis are connective tissue diseases. A ctd is an abnormality of the muscles. It is an overactivity of the immune system that produces weird antibodies in your blood. Some people have a true connective tissue disease like lupus but MCTD means that you have signs of at least 3 of the diseases overlaping but not a full blown case of a singular one. You need to see a RA and have blood work checking your ANA levels for the antibodies. DD
 
DD,
This is the area where I am confused. That is, I have had three ANA test in the past two years. All come back very negative. Not even close to being considered positive.

Two weeks ago I got my latest 1/2007
1. ANA results (16 U/mL the normal range is 0-99 U/mL) + greater 120
2. Sed. Rate (2 mm/hr the normal range is 0-15 mm/hr) + is greater 15

Furthermore in 10/06
Anti -SS-A (17 U/mL the normal range is 0-99 U/ml)
Anti -SS-B (1 U/mL the normal range is 0-99 U/ml)
RA-Factor 6.2 IU/mL
Sed. Rate (12 mm/hr the normal range is 0-15 mm/hr) + is greater 15

There is less inflammation now. If you consider the levels. I talked to my GI and he said that the biopsy would resolve the matter. Some 20% get diagnosed this way. Also consider the American-European System to dx SS. For these reasons I will visit the RA and get the biopsy of my lips to determine once and for all if SS is one of my problems. I already have BCFS. I need someone who has SS to chime in on this one. Please! I have PM others before. Their responses give me comfort but I still have many of the symptoms. I do face an uphill battle (I hate to use this phrase) on this one since 90% of cases are female....I am male. In my age group even lower. Blood work also argues against it as a possibility. Not that I want to be positive but just want to know what the hell is really wrong by not leaving a single stone unturned! It is much easier to face your demise right in the eyes than to be blindsided! That's true for me at least! Most of all I am comforted by the fact those years have gone by. Being in the engineering field I would never trust one data point. I would have to take the data in aggregate...many data points over time! Also my Upper GI endoscopy came back clean as a whistle!
 
Jenn: so as I read your posts, the sunburn.burning feeling in your face/eyelids/ears came BEFORE the illness that triggered (potentially) the BFS?

And that was 7 years before?

Was the sunburn feeling the only symptoms of that set that you suffered before the herpes/viral BFS?

I m just curious...my burning symptoms came before my twitching ones too.

And as far as metabolic disease, there are tests to conduct for inherited ones, I belelive, which are genetic in nature, but not too many for the aquired. I think the main ones are muscle biopsy, which shows changes they can attribute to metabolic stuff.

And I am right there with you if they need a guinea pig for a study. Bring the carrots and lettuce! I know of none, though it might be worth a quick check.

and Zeke: I think I may have mentioned it, but my RA won't do a lip biopsy for SS because my ANA is not even close...I think over the course of three years the highest was a 1:80 ratio. Also I never had inflammation on a C-reactive register or a SED rate of above 1, even though my symptoms SCREAM SS.

Though they also scream any of the other MCTD as DD points out rightly. Or Lyme disease. I think this is part of our problem, and why some are (perhaps rightly) relegated to leave the BFS diagnosis as is.

I keep hoping we can figure it out though. If you wouldn't mind, let us know how you make out.

Best,

John
 
I have had my ANA tested twice and also had SS-A, SS-B, SLE, RA, RF, ESR, CRP, all negative. I know these tests are only 60-70% accurate but it seems that something would show. In the beginning I freaked out over Scleroderma and Sjogrens but since have calmed down but now reading this it scares me a little thinking one could have a mixture of them..but then I think if I had a mixture of them my ANA or at least one bloodwork come back positive. I did see a RA and he said he did not think I had any autoimmune, well at least not SS or scleroderma..he said scleroderma patients at least 99% of them have raynauds syndrome and I do not and my eyes and mouth have not been dry in months so he said that cuts out SS. He did mention that he wanted to check me for a blood autoimmune disease because I am having problems with blood vessels popping and some other vascular things. He said he doubts it but wants to check for it. I think I would have Fibromyalgia more then anything but they say your sleep pattern is disturbed with that and let me tell you I can fall asleep before my head hits the pillow..lol..anyway who knows but I really hope I do not have any of the other ones. So do you have all of these diseases then DD? ...Jenn
 
Woz,

Yes the burning was before the twitches. I had the burning seven years ago and then it went away..then before my twitches it happened again and it was the only symptom I had, then a week or less I got sick but I had the herpes outbreaks before, between and after because I was tanning so it would get a little better then it would come break back out when I would tan again. I remember saying to myself, "wow I am getting these outbreaks really bad and often. I hope this is caused by a viral then caused by autoimmune disease. I have researched SS, Scleroderma and that stuff scares the daylights out of me :eek:. Jenn
 
Though nothing in life is absolute, it would be very unusual for you to have scleroderma given your test results (though I am no medical doctor). And I freaked out over that too. My RA told me that it would have progressed by now, showing physical signs of intractable skin, breathing difficulties, etc.
My RA is convinced I have a post viral syndrome, which is what we have all been describing in terms of how this all starts (a virus screws up our immune system, and we are stuck). The reason we are stuck is because they don't have a specific cause or antigen for it like SS or the others. BUt I think they don't work hard enough at.

So there is at least three of us, in the short time I have been here on this board, that I've found with this seemingly unique pattern to our symptoms. I wonder...

Since I have the vessel symptoms as you, might I ask what blood autoimmune test you are having? It might be helpful for my next neuro appt....I am gonna bombard him with some of this stuff and see what he says. He's at a teaching hospital, so he might be more inclined to pursue or at least know how to answer...

Again, you all have been a tremendous help to me....
 
eyennyGlimmer,
I agree with you on the SS and Scleroderma issues. I am convinced that at least for me the span of three years would have shown an elevated blood test such as SSA or SSB. Even an ANA should have shown an elevated level at least once in this time period. If it is a mixture then surely the ANA should have come back positive. I don't have statistics on this but it is slim to none that it could have gone undetected if multi-autoimmune where attacking the body. It is then more likely that there exists an unknown antigen/antibody causing varied symptoms beyond twitching, cramping. My situation also screams SS. If my RA says that my blood work up to now does not warrent a lip biopsy I will hand him a copy of the American-European Agreemnet on Diagnosing SS. I don't have Raynaud's. I want the lip biopsy for my own pease of mind. That is it. Woz please expand on your SS issues since other than the cobblestone lesions you have not hit on the hallmarks of SS such as dry eye(s), dry mouth, dry skin, joint pain, dry lips, dry nasal passages, SSA, SSB. I've got:
1. one eye that gets dry (right) and irritated
2. dry mouth this is mild but may be due to being on klonopin
3. mild dry skin but it is winter now
4. mild dry lips
5. mild dry nasal passages

Instead of complaning so much let me state some of the methods which I use to deal with dryness.
1. Take no more than 5 minutes in the shower. Do as much as you can in the sink (brush teeth, shave). I use to take 30 minutes in very hot water....soothing but dries you out even without SS.
2. Use moisturizer after showering
3. Stay of the computer as much as I can.
4. Realize I'm not a spring chicken & some elasticity is going to go away

These may be obvious to some but I am male and damit I played high school varsity football! I scored 4 touchdown at Polk High...Peg! In case you all don't know what I am refering to search for Married with Children!
 
Woz,

I am sorry I cannot remember the name of the blood disease he is going to check. I will find out when I have it done and then I will let you know. I always thought a viral but now I think why didnt the viral damage the system or maybe it damaged something else to make are system dysfunctional...lol ...who knows...I think I need Oprah :confused: ..lol...Jenn
 

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