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SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 6/27/2014 1:51 PM (GMT -6)   
I had posted in the Sjogrens forum a bit ago about blisters I have in my mouth. I still have no idea what they are, but they scare me because my voice is being taken away from me and I can't do anything to stop it. My throat hurts, water makes it worse, most food burns going down my throat and talking for about 5 minutes makes my voice hurt. The only thing I can really tolerate is carbonation (it initially hurts, but then it is soothing). Even those throat numbing sprays hurt it (for a few seconds, then it numbs it for a few minutes).

My Rheumy wanted me to see a dermatologist about it, so I did. In the mean time (because this voice thing is scaring me and I realize that it might not be related to the blisters), I made an appointment with two ENTs (one for the voice and another for the lymph nodes that are swelling in my neck and shoulders - I forgot to mention that one), but I do not see the voice one until August 4.

I saw the dermy yesterday, and honestly, I do not ever want to see another one again. This is my third one in two and a half years, and they are of no help whatsoever. He told me that the blisters are not in his range of specialty, and I needed to see a "mouth doctor". Okay. I can understand that, BUT there was more going on than just that. He was supposed to look me all over and he just glanced and said I looked completely normal. I mentioned the things that popped up within months when I first started getting sick a couple years ago, and he said they are normal (like the spots on my face, which do look like age spots) and bumps on my forearms. He said they are all normal parts of aging. Seriously, if another doctor gives me an aging comment, I will slap them. He did not believe me that I only have a third of the hair I had two years ago. He said my hair loss pattern was "normal". If it is normal, then why did (when I started losing it again a couple months ago) it stop with the medrol dose pack? And no, it is not "normal shedding".

Sorry. That guy just frustrated the heck out of me. I did point out some bumps on my forearm (which he said were normal) that started to appear withing the hour. They were on both arms, but I only showed him my left. I should have made him feel the right instead... that was where it was worse, but I did not know until I left and was on the drive home. I had an appointment earlier that I had to wait around for (the dermatologist was right across the highway, and I did not see the point of driving home for 45 minutes just to have to come back. I had my daughter with me, and we went for a walk around the park by the hospital. I was not planning on it, so I had no sunscreen and I was wearing a short sleeved shirt. By the time I left the dermy, my right (and left, but as I said, the right was worse) forearm was itching like mad. When I got home, I saw that the bumps really came out and my itching them was making them worse. I tried to stop, and succeeded for the most part, but they were still there last night so I shot this picture (the flash washed away the redness, but there was a lot there in addition to the bumps).

VIEW IMAGE

They were still there this morning, so I put some hydrocortisone on it. The redness has gone down, but it still itches a little.

At the dermatologist, he kept telling me that he did not know what I wanted from him because he could not diagnose Lupus without a biopsy, and he did not see anything that he could biopsy. First I never once asked him if I had Lupus. I also did not come to get a biopsy. I wanted the symptoms I was having to go away. I wanted my throat to stop hurting and the rash that I knew I was starting to get to go away. I was so frustrated that I did not know how to state what I wanted. (Plus, the guy was interrupting me and guessing (wrongly) what I was going to say before I said it). Even my daughter (at 11 years old) was saying that he was really rude and a real "pain in the butt").

I know I am flaring again. I feel that things are wrong and I know things will get worse. I want to stop it before it gets bad and lands me in bed and walking with a cane again. I don't want to wait until I look like a textbook case. I don't want a diagnosis, per-se... I want a fix. At least the Neurologist I saw yesterday, my Rheumy and my primary all take me seriously.
Frequent lurker, Part time poster.

Known Problems: Sjögren's, Hypermobility, UCTD, Arthritis, Hypothyroid, Migraines, Eye Problems, Skin Issues, Depression, PTSD, Anxiety, Autism (high functioning), and Gastric Bypass Surgery (affects what medicines I can take and for how long).

Suspected: Psoriatric Arthritis, Lupus, Fibromyalgia, Epilepsy, Endolymphatic Hydrops, and whatever they decide next

Post Edited (SoSt9) : 6/27/2014 1:00:00 PM (GMT-6)


Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 6/27/2014 2:18 PM (GMT -6)   
Is it a tingly type of pain? I saw a show yesterday about shingles - it might fit since the sores in your mouth are kinda' blistery?

Apparently shingles can show up inside your mouth! I'd ask the Drs you do trust about that idea -- then I think it's a neurologist who can actually decide for sure. Did you mention your mouth/throat to the one you saw yesterday?

Sorry people are giving you such a runaround - that sucks! My rheumy gave me Valtrex for fever blisters around the mouth - I think there are similar meds for shingles.

Arg!!!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 6/27/2014 3:48 PM (GMT -6)   
The pain in my mouth? It is sore, like I am getting sick. No tingling that I remember, unless you count that irritation feeling that makes you want to cough.

I was really sick in November, and Shingles was one idea that they threw around (I don't remember why - I had multiple things going on), but the idea was nixed when they found that I had some symptom before the others showed up. I wish I could remember what it was, but I do know it related to the pain I was having in my side. They decided that was Costochondritis (and one of them was saying pleurisy too, but she was not my main dr. It did get added to my medical records though). I personally am not ruling anything out though. It could be shingles. I will have to look that one up (I know what it is, but I don't know what it is)

I am pretty sure that I mentioned the blisters to my neurologist. She said she would wait to see what the dermatologist said. She is going on maternity leave in a few days, so I will not be able to talk to her directly. She told me that if I had anything I needed, I was to call her nurse and she would take care of me (including scheduling appointments - which I am really bad at remembering to do).

I did look back at my pictures (For those who did not read it, this is in reference to a post in the Sjogren's area - I found numerous blisters in my mouth (like on the soft pallet and throat area) the other day. I did not know if it was a new thing or not). and I found a picture I took a little over a year ago. The blisters were there then too... or at least the biggest ones were. I do not know how long this has been going on, but it has not been getting any better.

What show was it that you were watching? I might be able to look it up?
Frequent lurker, Part time poster.

Known Problems: Sjögren's, Hypermobility, UCTD, Arthritis, Hypothyroid, Migraines, Eye Problems, Skin Issues, Depression, PTSD, Anxiety, Autism (high functioning), and Gastric Bypass Surgery (affects what medicines I can take and for how long).

Suspected: Psoriatric Arthritis, Lupus, Fibromyalgia, Epilepsy, Endolymphatic Hydrops, and whatever they decide next

Talldoode
New Member


Date Joined Jun 2014
Total Posts : 16
   Posted 6/27/2014 10:10 PM (GMT -6)   
One of the symptoms of lupus is sores in the mouth.

As for dermo's... I havent found one in the past five years that wants to do "real dermatology" any more. They are (at least here in Vegas) mostly going to "cash only cosmetic work". Botox, lasers and skin peels. Oh, and they want to sell you potions and lotions. Complete waste of time.

I wish I had something for you. One thing about shingles - it only affects one side of your body at a time. If you have the blisters all over vs. left side or right side - then it isnt shingles. I had shingles in 2007 well before I was diagnosed with lupus and the left side of my face looked like a teenager. But the right side was completely clear. The doc told me that was the telltale sign of shingles. if you have a rash all over your body - it isnt shingles. Not sure if you do or not. Oh, they are usually localized too - so if you have a rash (for example) on your leg, your arm, your chest and your neck ... it probably isnt shingles.

Hope you start feeling less miserable.

cheers,

/tall

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/27/2014 10:26 PM (GMT -6)   
Have you tried using rum as a mouthwash to heal up the sores. Another lady on the fibro forum swears by it and others who have tried it too agree.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 6/27/2014 10:44 PM (GMT -6)   
I have used rum when I have open sores (I remember hearing about a rum wash somewhere here a while back), and it does help, but it does not seem to make these blister things go away. I think I might try some tonight anyway (I am really sore), so thanks for the reminder and cross your fingers! :)

And thanks for he info on Shingles Talldoode. I did not know that they were a one area kind of thing. I assumed that it was like chicken pox - it could be everywhere!
Frequent lurker, Part time poster.

Known Problems: Sjögren's, Hypermobility, UCTD, Arthritis, Hypothyroid, Migraines, Eye Problems, Skin Issues, Depression, PTSD, Anxiety, Autism (high functioning), and Gastric Bypass Surgery (affects what medicines I can take and for how long).

Suspected: Psoriatric Arthritis, Lupus, Fibromyalgia, Epilepsy, Endolymphatic Hydrops, and whatever they decide next

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 6/28/2014 12:10 AM (GMT -6)   
It was a tv show called "second opinion" or something like that. Don't know when it really aired, my TiVo saved it & I watched it last night. It did say that while shingles are 'almost always' on only one side of the body (due to where our nerves are located, remember shingles generally follow the nerve lines), there are some people with abnormal nerve growth where the shingles are not limited to one side (altho they don't wander too far).
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde
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