WOW... you found a good one there...I'm glad he is listening to you and looking at results... so happy for you to find someone that will listen and help.
I've seen a Neuro Opthomologist a couple of years ago for double/blurry vision...I waited hours in his waiting room and months for the appt...he just asked a few questions and look into my eyes with a light.. that was it... he said it's not ON... no other help..
I am hoping to see a new one soon too... maybe in the new year.
can't wait to hear what comes from you results... and too bad we can't find a radiologist to look at our MRI? Do they do that outside of their job at the place of MRI?
I think you might be getting closer...so good... keep us informed.
How very interesting. I could just see you sitting there on the edge of your seat getting questions asked and answered. Wow, that must have felt great. What an great visit you had, and did you ever earn it.
So, you are having the VEP in January. Is he doing this test to see if your visual disturbances are related to MS or can a VEP be abnormal in SS as well? If this is SS, what types of treatments are available to you?
The doctor you saw really seems interested as well as interesting. Now if you can just find a neurologist who has the same qualities, then you will be in great shape as far as your neuro team.
Thanks so much for sharing this positive neuro experience.
Wobbly, my first ophalmologist sound just like your last neuro-opthalmologist; a real nothing! I hope you find a really good one, like this new doc of mine!
My best friend works with the neuro radiologist that read my brain MRIs and said that the distribution of lesions is far and away most likely to be MS. I just need a good neurologist; as the neuro-opthalmologist pointed out, he's my fourth neuro! I think he'll be a big help.
Julie, it was really cool to get answers to a lot of questions and have someone that seems genuinely interested in figuring out what's going on with me, and is willing to keep digging and asking more questions!
My follow-up appointment is scheduled for an hour; also cool!
The VEP shows if the signal going from my eyes to my brain is messed up; I would guess that that would point more towards MS, but I'm not sure.
I hope this guy will point my current MS specialist in the right direction, especially with all the tests he's ordering.
I may go ahead and schedule an appt. with a rheumatologist that I saw a few years back; I think they are the ones that treat Sjogren's. I would prefer a good neuro, so they would consider a dual diagnosis if that's the case. If I need DMDs, I want to know it and get them!
I just took a Sjogren's Syndrome screening quiz at About.com, and scored a 71%; and it told me to see a rheumatologist. :o)
Kathy--I'm surprised you haven't had those blood tests already??? This guy is making a good catch for sure. I'm glad he is being thorough and is smart enough to think of Sjorgen's. I think you know too the tendency for autoimmune problems to run in packs, so it's good that he's ordering a more general ANA as well as the more specific Sjorgen's.
If you have not seen a rheumie, you should keep it in mind. Mine was helpful to me, in particular she helped me understand why I do not have fibro, and she did order very detailed blood work that showed interested stuff (such as that my SED rate more than tripled in a few monthes and my TSH level is rising, etc.). My PCP and neuro didn't think I needed more bloodwork....
Anywho, glad you found this guy. Hope your eyes are settling down, I hate getting dilated!
I always felt that my neuros didn't order enough tests for rule-outs. My LP bloodwork showed slightly elevated ANA, and my PCP checked it again when I had a rash that looked like a lupus thing.
I hadn't learned enough to ask for specific tests; I'm learning a lot since I joined this forum!
I've had the dry eyes and mouth for years. My SED rate is often elevated, sometimes my white blood count, once my CRP.
The rheumie i saw before basically ruled out ankylosing spondilitis and sent me on my way, so maybe I'll look for another. It sounds like you had a good one. I love to have stuff explained to me, or at least get lots of lab results and figure it out myself.
I don't think I have fibro, either, though that was thrown over me years ago when my doc at the time couldn't figure out what was going on with me. She also dropped me as a patient because I was too insistent on finding answers. I'm getting better at being effectively insistent, and spreading my questions between doctors!
I can actually see that my eyes are green once more. They were so dialated that I had little lights swimming all around my peripheral vision!
I have bene Dxed with Sjogren's since '93. When I got my Dx the doctor said I had the driest eyes he had ever seen. In fact when they did the strip of paper in the eyes to test how dry they were the paper stuck to my eye and riped off. It took the doctor 15 minutes to get all of the paper out of my eye.
The last I heard was other than treating the symptoms there is no treatment. I currently use eye drops (Artifical tears) to moisten my eyes and drink a lot (practically constantly) to lubricate my mouth. There is an artifical saliva out there but don't have any other info on it. The only other problem I have from it (that I know of) is dry itchy skin every winter due to the low humidity. I am still looking for something to help that. It could also be the cause of my GERD, but that is a recent problem so I'm not about to place it on the Sjogren's just yet. There are other symptoms that come with Sjogren's like fatigue, vaginal dryness, and muscle aches and pains to name a few.
A lot of my symptoms don't fit with Sjogren's either so like you stated I think I have multiple problems (MS & Sjogren's). I always mention the Sjogren's to my neuros but the lastest ones have had nothing to say about it other than it is hard to spell. :) I think this is because they either don't know much about it themselves or that they are seeing symptoms that don't fit it.
Great appt! I am so glad - Lynette
I've had pretty much all the symptoms that you listed, as well as sinuses that are so dry that I keep getting infections 'cause the fluids don't drain out as they should, and bacteria has a chance to grow, for several years. I've been using lubricating eye drops, paid $1000s for dental care, have a messed up sex life, and hurt more than I should. I always have water with me, even at night. I can drink up to 32 oz. throughout the night. I see that last night I didn't empty my water bottle.
More recently, it has been more difficult to regain strength, like after my last knee surgery, oh, and my shoulder surgery, too. My left quad is atrophied, and my shoulders/scapulas/neck and back are kind of a mess.
I've had GERD for many years, well treated with Prevacid after an upper endoscopy showed Barrett's esophagus. My dad died of esophageal cancer from Barrett's. Please make sure you take a proton pump inhibitor for your GERD!
Luckily the humidity is high here in Oregon, so only one of the papers stuck, and the tech was able to pull the piece that ripped off without problem. The neuro-ophtha said that if I lived in Nevada, I probably would have scored a 5, when 15 is low-normal. I scored like 16, but he said that it was in the normal range only because of the humidity.
No wonder I use a lot more eye drops when I go to Las Vegas!
I had a guy friend that swore that his skin was so soft and supple because he ate peanut butter every day; don't know if that could help your dry skin! :o) My skin scrapes and scratches easily. I usually put on lotion all over every morning after my shower, but it's still pretty dry. I have to exfoliate often; keeps the itchiness down.
I think you're supposed to have your Sjogren's followed, so that you know it's not affecting your organs. I haven't read far enough to know what tests need to be done, but I hope you have a doctor that's on top of it.
What is a proton pump inhibator? The only thing I take for my GERD is Ranitidine. 300 MG 2 x a day. I only developed this last July so I am very new to it. The only time I have problem with it is when I forget to take my meds (which has been happening all too often lately).
I had my eye dryness tested in Miami FL. (don't think the humidity can get any higher than there). They only used one paper as I think after the problems with the first one they didn't want to chance it with another. The eye doctor didn't really give me a score because the paper was useless by the time they got it out of my eye as they had to put a gallon of eye drops in it in order to get the shreds of paper out. He probably just put the lowest score possible down. I've also spent $1000 on dental bills, without much success. I've been considering having them all yanked and getting implants put in.
My dry itchy skin so far has been limited to just my lower legs. You would think that the Peripheral Neuropathy in them would stop the itching :( I use to use Neutragena Body oil on them but had to stop because it started to bother me (make me sick from the smell). My legs were so soft and smooth during that period. So far I have not found anything to replace it. So far every product I have tried has had the same effect.
While I have heard the term "exfoliate" often I have no idea of what that is. Probably because I'm a guy! :) Some mornings when I wake up my legs will be bloody from scratching them in my sleep.
Actually I have not head anything about Sjogren's needing to be followed. But I do know that my doctors are always testing everything in my body. I could swear everytime they do blood work they take about a gallon of blood and this is usually about every 3 months. Right now I know that my Liver is a little on the high side and my kidneys are also starting to have some problems. I think these are being effected by some of the meds I am on, but can't go without. I also have an echocardiogram coming up next month and every doctor I see wants to do another chest xray.
It sounds like your doctors have you covered, testing everything and doing it often!
Oh, man, you have some SERIOUSLY dry eyes! They just used these little strips of paper in each eye on me; maybe it's to avoid things like what happened to you! They also put a drop of something in each eye before they put the strips in. Ewwh.
I floss and brush religiously, and still have gum recession. I think I'll take my dentist some information about Sjogren's, so she can think of that as a possibility when a patient takes good care of their teeth and still has problems. She probably hears a lot of "but I floss and brush all the time!" when people really don't, but I'm not one of them.
A proton pump inhibitor are drugs like Prevacid, Prilosec, and Nexium. Ranitidine is the generic form of Pepcid, and is a histamine H2 receptor antagonist, which means it inhibits stomach acid production
Proton pump inhibitors use a little different action (OK, I don't understand all the medical stuff totally), that causes a pronounced and long lasting reduction of stomach acid production.
My gastroenterologist told me that the PPIs are the much better choice, they are more effective. My dad always had indigestion, so when I found out I had Barrett's Esophagus from my GERD and that it could cause cancer, I told him he should go and get an upper endoscopy.
He told me that he was taking Pepcid and that he almost never had indigestion any more. I tried to explain, but as I was still his "little girl', he just smiled and said he was fine.
Apparently the Pepcid was controlling the symptoms but not preventing the damage. So please do ask one of your doctors of you should take Prevacid or Prilosec instead of Ranitidine, just to be extra careful. An upper endoscopy is a piece of cake, if you end up being sent for one.
Exfoliating; removing the dead skin cells. I do this with some gloves that they sell all over; they're made just for that, kind of scratchy material. I don't know if they make them man-sized, but I'm sure they have cloths that will work. I just take a bath or shower, so that my skin gets nice and wet, then soap up my gloves and gently scrub my legs, arms, etc.
They also make exfoliating sugar scrubs, but if your skin is real sensitive, then you probably don't want to try them. Most of them smell yummy, and probably have all sorts of scents added. Then there's the old fashioned loofah, but I think they hold more bacteria; the gloves or clothes are easy to wash out.
Its kind of surprising how much smoother your skin is after you rinse off. I suppose you're not interested in the fact that it makes it easier to get a close shave on your legs! :o) Ha ha!
I think it's the dry dead skin that itches the most, too.
I use a lotion called Renew Intensive Skin Therapy, made by Melaleuca, Inc. They have a website; www.melaleuca.com. I've always had sensitive skin, and this stuff never irritates it. Once after an epidural injection my face flushed so bad from the steroids that it felt chapped. I put this lotion on, and it felt better right away. Wish I could send you a sample.
I hope your Echo and chest x-ray show only good news!
According to my last dentist it is the lack of saliva that causes the problem with teeth and gum. It makes your mouth a haven for bacteria and plague. I have read about an artifical saliva but have never seen it any where. Maybe your dentist would know more about it.
I just had the upper endoscope done in October along with a colonoscopy. All was fine with the upper as the GERD had just started up in July or August. But I will try to remember to talk to my PCP about this.
So where in a store to they sell those gloves and clothes? I have never seen them in the areas I usually walk through. :) Or is it that I just don't go to the right stores? My skin is not really sensitive, it is my nose. I also suffer from multiple chemical sensitives meaning that most perfumes, cleaning products, etc make me sick. Just going down the laundry soap aisles does a number on me and I have to make it the last one I go down when shopping or I can't make it though my shopping trip. I'll have to check out that lotion. Does it have any fragrance?
Thanks for the Info...
Are you my long lost brother? I have the chemical sensitivity problems, too. I have to take a deep breath and hurry past a soap aisle or scented candles; I get special cleaning stuff, special laundry soap, don't use fabric softner, etc.
I've seen the gloves and cloths in Fred Meyer, Bi Mart; department stores. They have them in specialty stores, too, but charge more. I think they are usually by the pharmacy stuff, maybe where they have bath oils and stuff like that.
The Renew lotion has a very light scent, light enough that it doesn't bother me. I also have vasomotor rhinitis; my sinus tissue swells up when I smell strong scents and I get a massive headache. This lotion doesn't bother me when I have it on all over.