Author Topic: Hello from new member in Wisconsin  (Read 3881 times)

mando621

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Hello from new member in Wisconsin
« on: March 19, 2010, 05:28:38 AM »
Hi all,

I've recently been reading through the posts and I thought I really should join. I've been dealing with what I have thought is Sjogren's for about 10 years now. It all started with dry eyes and then went down hill from there.

Actually, I've had many issues crop up and now I really think that I have more than just Sjogren's, possibly limited systemic scleroderma, without many skin issues yet.

My main issues are: esophageal hypomotility of the smooth muscles, difficulty swallowing and feeling like food is stuck in my airway lately, Raynaud's, abnormal capillaries of the nailfold, smaller top lip which is stiff, fatigue, swelling in my hands in the morning, stiffness in the hands, random aches, extremely dry eyes, band keratopathy now in the right eye, burning mouth, and dry most places.

My first attempt to find out what was happening with a rheumatologist was pretty bad. I've actually seen 6 rheumatologists and they really don't seem to know what is going on. My blood work comes out normal which makes my rheumatologist really reluctant to give me any kind of clear diagnosis. Other than Sicca syndrome I have been told it could be undifferentiated scleroderma, but without definite skin changes on my hands, sclerodactly, he won't say that its sclero.

My own attempt to do research gets me so frustrated. I've found scholarly research in medical journals which contradict my doctor. With abnormal capillaries and esophageal muscle fibrosis, that points to scleroderma even without blood markers. As to Sjogren's, I have less than 3mm of moisture on the Shirmer's test, I've been using Restasis for 6 years. Now I have a band of calcium deposits on my right eye from the dryness. My mouth hasn't been too bad yet, but I just recently had 3 fillings replaced and a new cavity filled. That work is really difficult for me since my mouth seems to be getting smaller.

Well, my appointment with the rheumatologist on Monday has resulted in an appointment to have a lip biopsy on Tuesday next week. Also another trip to the Gastro doc to see if things are worse in my esophagus. I've been avoiding the lip biopsy since it sounds terrible. I've asked if the results would actually change my treatment, since we can see what is going on, why can't we treat the problems. Well, I'm tired of fighting this and decided to go ahead with it even though I'm worried it will end up inconclusive and I'll have been tortured for nothing. I'm also worried since I got a life insurance policy some years ago when this was all beginning and there is a rider on my policy that I can't have Sjogren's. I'm not sure if that means when I applied and got the policy, or for the life of the policy.

Well, if you made it here, thanks for listening to me. There aren't support groups in my area and I really get to feeling depressed when I have no one to talk to about my problems. As you know, people around us get tired of hearing the same stuff, and I'm not gong to share this with people I work with.  I'm a teacher and it is difficult at times but so far I've been able to keep going.

Have a great week.

Mando

Bernice

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Re: Hello from new member in Wisconsin
« Reply #1 on: March 19, 2010, 10:09:14 AM »
Hey Mando,

Welcome to the site!

Yes I read all the way through your post, but today is a brain fog day so I must admit I might have some things mixed up here or there, but I did read.

First I understood you to say you have had as many as 6 doctors, but none are willing to label or treat your symptoms because of proof in bloodwork, right? Well I think it may be time for you to visit yet another, because if you have been having all of this I would think more needs to be done in spite of test results. What if the boo. does not show anything, are you to continue living like this without help? There are doctors out there that will help you, you just have to fight through them to get to the right ones. Some of them are so technical to the point they are about useless! ::) ::)


Look, you come here when you need a listening ear, we do understand the madness of it all. Now I must admit I am not sure about the small lips thingie, what is that, something to do with the other disease you mentioned? Well the fact that I don't understand, means just that, somebody will come along with far better answers. We have so many well informed people here.

Another thing are you male or female, couldn't judge by your post?? You name can be taken more ways than one, know what I mean?? ::) ;) ;D

Scottietottie

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Re: Hello from new member in Wisconsin
« Reply #2 on: March 19, 2010, 10:12:51 AM »
Hi Mando  :)

Welcome to Sjogren's world.

Quite a few people in here are sero-negative but have still been dxd with Sjogren's, so there are rheumies out there that will give a dx. The main thing though is to get the symptoms treated. Have you been to an opthamologist? Have any of the rheumies tried prednisone or Plaquenil?

Many of us took a lot of years before we got a diagnoses and understand how frustrating that can be.

I hope you find the site useful.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

mando621

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Re: Hello from new member in Wisconsin
« Reply #3 on: March 19, 2010, 11:16:20 AM »
Hi back,

Nice to hear from you.  Well a little bit more about me.  I'm a 46 year old female, and I play Irish fiddle and Mandolin, thus Mando. I teach math at the university in my home town, a small rural town in south central Wisconsin. I began playing fiddle about 6 or 7 years ago, just for fun. The mandolin became a good instrument after having shoulder surgery 2 years ago. I was a computer programmer for 10 years. I've been at the math teaching for 10 years now too. I have 3 daughters all in their teens, one in college. I've been married 27 years. My hubby is currently unemployed and interviewing today.

The small mouth is scleroderma related. Stiffening or thickening of the skin is the hallmark of the disorder scleroderma.

I see an opthamologist and I guess he isn't willing to put a name to it other than Keratocongunctivitis and sicca syndrome. My GP says that regardless of blood work, the symptoms are the deciding factors, but she hasn't said it is one thing or another either as far as I know. I really need to get in and get copies of my records from her.

I saw 6 rheumatologists because my HMO had 2 that ended up leaving the plan. The first said it couldn't be Sjogren's even with positive eye tests because of the blood work. When I mentioned that only 60-70% of people have positive antibodies, he asked me if I was studying to be a doctor. And he said it quite rudely. I did see a specialist in a university hospital, only she is a Lupus specialist. She was the first to recognize a connective tissue disorder, possibly undifferentiated scleroderma.

The 2nd gastrointerologist I have seen sent me to a specialist at the university hospital since he didn't have experience with my type of hypomotility of the esophagus. The specialist said it was definitely connective tissue related, and typical of scleroderma and not actually the swallowing trouble seen in Sjogren's which is typically higher in the esophagus.

I tried taking plaquenil but it made me quite nauseated and gassy. Not good for a person standing in front of a classroom. I have a prescription for Evoxac, but I probably won't fill it until after the lip biopsy. Also, sweating is not good in a classroom where I already sweat pretty badly. My eyes are much worse than my mouth. Prednisone is not really recommended for scleroderma from what I've read. There is so much overlap of symptoms in the two disorders it is hard to know for sure what is going on, I guess that is why I've decided to go ahead with the lip biopsy. That might clarify things. 

I've been in the process of trying to figure out why I have all these issues since 2003. That is the year I finished my masters degree.

Thanks for your posts.

Mando

Pisces24

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Re: Hello from new member in Wisconsin
« Reply #4 on: March 19, 2010, 01:48:07 PM »
Welcome from a fellow Midwesterner. I am in Eastern Iowa. I am a fiddle player too though I have not picked up mine in a few years and I'm 1/8 Irish.

Have you ever had a swallowing test? Reason I ask is I have spots in my lungs they are checking but a swallowing test was suggested before they ruled that out. Do you notice that milk products tend to "coat" your throat?  Also since you are also getting the "specialist runaround" I would suggest trying a teaching hospital. That is where after 6 years I finally got diagnosed. They actually go after problems instead of ducking them like some specialists do if you don't fit the "textbook symptoms, etc." I always get 2 drs at a time and they actually LIKE to research stuff. Mine are great and go after stuff like a hound dog after a rabbit in a woodpile - don't give up. LOL  :D

The dr that asked you if you were studying to be a dr is full of himself and doesn't know but is too pompous to admit it so giving you the run around. Ditch him!

An anxiety med would help you take the edge off stuff -you don't say if you are taking one. Also talking to a physchologist or counselor just for 2-3 sessions would help too. Most insurances will at least pay for that.  Good Luck!


mando621

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Re: Hello from new member in Wisconsin
« Reply #5 on: March 20, 2010, 08:01:44 AM »
Hi Pisces24,

Too bad we can't get a virtual session going and have a good play.

Yes to the swallow study. Pretty comprehensive: 2 endoscopies, biopsies, manometry, Bravo capsule, barrium swallow study, Impedance test that found non-acid reflux which went pretty high in my esophagus.  I am seeing the GI again on Thursday to see if we need to do something again since problems seem to be getting worse.

It was interesting that my GP at the time didn't think much of my swallowing trouble. She wanted to send me for MRI of the brain and to neurologist.  After the manometry showed that the muscles of the lower esophagus were pretty much not working I received a call from the staff doing the test, "no wonder you are having trouble swallowing". My GP didn't take kindly to that information so I found a different family practitioner.

I've talked with a counselor at work and had one appointment with a counselor at a clinic. The person at work was great, but the other counselor not so much.

Mando.

lynnmarie219

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Re: Hello from new member in Wisconsin
« Reply #6 on: March 20, 2010, 09:13:13 AM »
Hi Mando and Welcome to Sjogrens World!

So glad that you found us here...I'm from Illinois so not too far from you and yes I understand the need to talk to others who understand and this is the best pace to do just that because we have all been there in one way or another.

It sure sounds like you have a lot going on even though they cant seem to nail down a specific diagnosis for you...hopefully you will get more answers with your upcoming appts.

One question on the plaquenil...how big of a dose were you taking? Sometimes people start out taking a very small dose and work up to a bigger dosage slowly....and always take with food to help with the nausea and other side effects...just a thought!

Hope you continue to read here and get information and answers to your questions....if not...just ask!

Welcome!

tmarie0183

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Re: Hello from new member in Wisconsin
« Reply #7 on: March 20, 2010, 09:58:27 AM »
I also live in Wisconsin!! What part do you live in and who is your doctor??

mando621

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Re: Hello from new member in Wisconsin
« Reply #8 on: March 20, 2010, 11:55:04 AM »
Hi tmarie,

I'm in South central Wisconsin.  My doctor is in Janesville, Dr. Jasek. The only rheumatologist in my HMO plan.

jstroble

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Re: Hello from new member in Wisconsin
« Reply #9 on: March 21, 2010, 09:28:22 AM »
Hi Mando

I second Pisces's suggestion that you consult at a university hospital.  I have several connective tisses diseases and most of them are  so rare that other rheumatologists just don't see enough to make an accurate diagnosis.  The only one I don't have is scleraderma.  It sure sounds like you have that.   Have you ever thought about Mayo Clinic? 

Warm thoughts

Joyce