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New Here...not Sure Whats Wrong

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Hi everyone, hope you don't mind me posting, I have lurked here forever and have gotten to "know" all of you a bit...what a lovely group you are. Obviously this is not a board you would lurk on unless you have concerns. A short version of my story is...my symptoms started this past march or April, with sun sensitivity and this weird thing going on with my mouth. It felt so weird, numb, tingling in the corner and I alway felt like I was drooling but I wasn't. My mouth still feels strange, and now its pretty much my whole mouth. Also my mouth looks different, to me, like one side is receding into my face more than the other. Have lots of upper lip wrinkles, not sure whats aging or not, I am 45. My eyes and eyelids are always on fire and it hurts to close them. If I look at the lids they look wet cause they are shiny. ( I must ay even my husband insists I look absolutely the same as always) I am very sensitive to light especially flourecent. Sometimes I do get the feeling that my salivary glands are sore. My left hand has become noticably swollen in the palm area under the fingers and when I open my hand it feels like I am being resisted by a rubberband. Based on these symptoms, I have wondered if I have sjogrens, scleroderma or both.

Anyway been to a rheumatologist and all my bloodwork has been fine and he has pretty much given me the feeling that he thinks I'm a hypochondriac. Anyway that changed a bit yesterday, when at my visit, he told me I do have an autoimmune disease, vasculitis, based on results of a spot taken off my bottom. He wanted to start me on plaquenil but I asked if we could wait while I did a bit of research. My feeling is...what else is going on here...I have researched the vasculitis and in light of my other symptoms, think its just one part of the puzzle. But he seemed more than happy to label me with vasculitis and leave it at that.

Anyway, thanks so much for any comments or suggestions you can give, sincerely, Eileen

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Hi and welcome....I'm fairly new too.


I would not leave it at that if it were me and I did not like his answers. You should always ask for a second opinion if you have concerns and you don't believe he/she is addressing your problems. I personally would ask my family doctor for another referral to a different Rheumatologist. You might even be able to locate one in your area with a good reputation, query arthritis/doctors online to see what you get and try to get a little research on him/her before you go to your doctor to ask, then you may even be a little prepared? Autoimmune diseases can be so complicated sometimes and having a good doctor you trust and can communicate with is extremely important. I hope you get some answers soon. Keep us updated.



Sending good wishes your way!

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Hi Eileen,


I agree with Ramona. Get another opinion and try to find a doctor who is a scleroderma specialist. Believe it or not, your story is not uncommon. People are sent home in pain, sent to psychiatrists and so forth many times before getting a correct diagnosis. You have to be your own advocate. This website has a list of sclero specialists, listed state by state. To me, it would even be worth it to travel out of state to get a correct diagnosis, if you can afford it. After that, another doctor could probably follow a protocol set up by the specialist.

To me, it sounds like you have a lot of issues that need looking into.


Mary in Texas

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Eileen, welcome to out humble but hugh and growing group. We welcome you with open thoughts and cyber hugs. Sometimes it takes awhile to finally get a proper diagnosis. If you want to know for sure then go to a Rhematologist , Scleroderma Specialists. Then hopefully you will get proper information. I also started with the numbness coming and going around my lips, corners and chin area. Then my hands and carpal tunnel. Then just the swelling of hands. So, don't let your doctor shrug you off or make you feel like he thinks you are making things up. Make him listen or go elsewhere. I had to go outside my plan to get a proper diagnosis. I pay through the nose also. Anyways, until you decide what to do with the plaquenil. you can practice stretching your mouth and facial features saying your vowels with huge exauration. Keep streching your face and jaws a couple times daily. Driving a car, whenever. Also lay your hands flat on a table and open and close fingers. Pressing and releasing. This will help your fingers and the swelling a bit. When you are waking or slightly consious during the night make sure your hands aren't in fists or fingers curled. Consiously straighten them. If may prevent drastic curling if that were going to happen. That is a couple of the things I do daily to keep from feeling the tightening that happens peroidoticly. Swallowing issues are normal for most of us.

The spot on your bum wasn't morphea was it? If you aren't having sever pain and swelling constantly then I would try to wait awhile before starting plaquenil if you can. You know your body and what you can tolerate.

Maybe, someone will respond about what point they were at when they decided to take Plaquenil. I just take alot of prescription Motrin and over the counter motrin when I am being bothered more than I am comfortable with. Sheryl

Strength and Warmth,



Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Eileen, and welcome aboard. I am sorry to hear that you are suffering right now! I hear your frustration... From past experience I know that getting an "easy" diagnosis feels kind of like a cop-out from the doctor. However over time your diagnosis may change. Autoimmune stuff is very difficult to diagnose, and therefor a good doctor will approach this with careful discression.


I found that Plaquenil was a very good med. for my illness. I hope that what I have will never progress, so I am content with my diagnosis...however "wishy woshy" it may be! Please be sure to pay extra attention to any changes that you may notice with your body or health...these are the things that help the doctor to get an idea for what is really going on with you.


There is a great group of folks here for support, and the ISN has many articles with invaluable information.




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Good Luck with your diagnosis... Have you found a rheumatologist yet? That is probably the first step to a diagnosis.


Keep us posted!


Welcome Aboard!


Denelle B)

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