New and Having Ups and Downs
Posted 18 June 2009 - 07:32 AM
Well, this is a board I never dreamed I would be a member of.
I was diagnosed with Limited Scleroderma approximately 2 weeks ago.
I am 40 years old. ( I will be 41 in August ) I am divorced and have been with my fiancÃ© for the last 12 years.
Back in 1998, I was cleaning the house when I noticed one finger was white and cold. it stayed this way all day. it puzzled me and I thought about going to the emergency room, but didn't, and it went away.
Before I knew it, that started to happen more and more, and in all of my fingers. as time went on, it also began to happen in my feet, although not in exactly the same way; my fingers would turn white, then blue, then red, while my toes would turn a dusky blue and just stay that way, ( every now and then, they would turn white, then blue, but never in the same predictable white, blue, red pattern my fingers did )
I had heard of Raynaud's syndrome years before, when a woman I used to work with always complained of being cold, and one day she showed me her white hands and said "it happens all the time, its called Raynaud's syndrome." at the time, I just thought "weird" and never thought about it again until years later when it began to happen to me.
I looked Raynaud's up on the net many, many times and it always mentioned a possible connection to Lupus. Never ever did I read anything about it being related to Scleroderma. The Lupus thing worried me, but since I am a terrible Hypochondriac to begin with, I told myself I was over reacting and not to worry about it.
Whenever I went to my regular doctor over the years, I always filled out the paperwork they give you and mentioned the Raynaud's. ( you know, the paperwork where they make you check off the boxes listing what has or hasn't been bothering you, and about what diseases run in your family, etc..) and the dr would just say "Wow, Raynaud's... OK, keep warm." she never suggested any further testing or anything.
Since about the age of 20, I also had ocular migraines, where you see the zig zags, the flashing lights, the blind spot, etc.. but usually no pain associated with this. If I ever did get the pain, it was always mild and brief. A few times, I had some scary episodes where I couldn't think straight: My brain would want to say something, but I couldn't make the words come out of my mouth, and I had difficulty distinguishing reality from dreams... for example, during one episode, I had to ask myself "did I just speak to my co-worker Mary, or was that I dream I had about Mary last night?" ( I know that sounds weird, but that's what happened, and I can't think of any other way to explain it. )
So, other than the ocular migraines and the Raynaud's, those have been my only real complaints over the years, aside from some infrequent heart palpitations.
As time went on, the Raynaud's got worse. Now, it happens on and off all day long. Winter is worse, but even in the summer, even if I am not cold, the slightest little thing sets it off. (Even if I carry a heavy grocery bag it will happen.)
Fast forward to January of last year:
I decided to have the Lap Band surgery. I went through some pre surgery testing, and everything was fine. I have been overweight all of my life and decided on the Lap Band because it was not as invasive, dangerous or risky as the gastric bypass. I did much research on the surgery before hand, and most who had it said how easy the recovery was, as it was only laparascopic. One woman even said she was out shopping the day after the surgery, so I was really looking forward to being back to work in a few days.
I had the surgery, and although the surgery itself went perfectly, I felt like I was hit by a bus. I was dizzy, light headed and nauseous. All I wanted to do was sleep, and I seemed to be in a lot of pain where they put the port under my skin. (I expected some pain, but I didn't expect the "hit by a bus" fatigue, etc.)
Otherwise, the recovery went well... no post op infections, no other problems with the band of any kind. It did take me 2 weeks to go back to work, and even then, I wasn't quite ready. I could have used another week.
That was January 2008. While this was going on, my beloved mother ( who lived in another state ) became ill. she was in and out of the hospital several times, and it began to get serious. It got serious enough that I decided to move to the state where she lived just to be closer to her and keep an eye on things. (And keep in mind, I had just recently moved in February, and less than 2 months later I packed up and moved 700 miles to be with my mom.)
All during this time, the stress was building in my life. Since 2004, things had been VERY stressful in my life. I had lost several of my beloved pet cats to old age ( they were like my babies ). I moved 3 times, I broke up with my fiancÃ© ( we have since gotten back together, but the breakup was VERY stressful ), had the lap band surgery, and then my mom got sick, so my fiancÃ© and I packed up and moved AGAIN.
We got to my mom in May, and she just got sicker and sicker, in and out of the hospital many, many times. Her health was up and down. I just started a new, high pressure job requiring long hours in front of a computer and I wasn't eating right or getting much sleep... not good.
In the midst of all of this chaos, I started having problems with my vision; I started to have double vision. I had this very infrequently in the past, and I was sure it was due to many long hours on the computer, but I didn't want to take any chances, so I went to an opthalmologist. He said he wanted to make sure everything was ok, so he sent me to have an MRI of the brain.
The MRI came back abnormal, showing 3 lesions. He referred me to a neurologist.
I saw the neuro who gave me a few tests in her office, looked at my MRI, and asked me many, many questions. ( I was concerned about the lesions being caused by MS, and the neurologist I was sent to is an MS specialist. )
She said although the lesions do look like MS lesions, she doesn't think I have MS, and doesn't think my eye problems were related to it. ( She said double vision with MS often is connected to Optic Neuritis, which I don't have, and it also comes on and stays for many hours or many days at a time, and mine didn't do that. Mine would come on only after a long day at the computer and when I was overtired, and it would go away in 5 minutes or less, after I rested my eyes. ) I have never had any other signs or symptoms of MS. I even mentioned the ocular migraines to her, as well as the times I have had that weird confusion. She said those incidences of confusion were definitely a type of migraine. She carefully studied my eyes and said they don't "track" exactly the same, that the left seems to be a bit weaker than the right. She said I may have been born with this, She also said it was possible the lesions on the brain could have been caused by these ocular migraines. Just to be safe, she had me do another MRI of the brain, as well as one of my spine.
No lesions at all on my spine, and the ones on my brain were not "active" and remained unchanged. she said its possible they could have been there for years.
She feels I definitely do not have MS, but just to be on the safe side, I am scheduled for one more brain MRI in October, just to see if there have been changes.
So, you may be asking, where does the Scleroderma come in? I'm getting to that..
Sadly, I lost my Mom. Her illness and passing was very stressful, as it was awful to see her suffer. That, combined with the new job and the long hours, as well as taking over my mom's role in keeping my step dad company ( cooking for him each night after a long day at work ) was beginning to really take its toll on me, not to mention I was still trying to adjust to the new lap band... I was just plain TIRED. No matter how much sleep I got, it was never enough. Not only that, but I began to feel dizzy a lot, and my arms always felt tired; when I would wash my hair in the shower, or blow dry it, my arms felt like they needed a rest; I thought this was weird.
Add to the mix I had a pap test come back abnormal.. can you say VERY, VERY stressful?? ( It later turned out to be fine, but I had to go through several medical procedures and tests to finally get the all clear.)
It was not only raining in my life, but POURING!! The recent move, (which was the latest in a long string of recent moves) the lap band surgery, my mom's illness and subsequent passing, the loss of several of my beloved cats, the abnormal pap test, the abnormal MRI, the new job with long hours, coming home and cooking a full meal every night for my step dad... something had to give.
I went to my new general practitioner and advised her I wasn't feeling right. I mentioned the Raynaud's, and how this worried me. I also have rosacea, and I told her I wondered if it was really rosacea, or could it be the Lupus rash?
She took me seriously and ordered blood work.
It came back with a high ANA. She sent me to a rheumatologist.
The 1st rheumatologist ordered x-rays: chest, hands, knees, as well as additional blood work. the x-rays all came back perfect, but I didn't like her, so I didn't go back for the blood work.
I found another rheumatologist who listened to what I had to say and did the nail fold test in her office. ( I can't spell it, but its where she puts a drop of oil on the nail bed near the cuticle and looks at it under a micro-scope type of thing to see if there are any abnormalities in the blood vessels there.) She said mine was "borderline" and she ordered blood work.
It took me 6 months to go back for that blood work because I am afraid of needles, but I finally had it done.
The rheumatologist called me and said "I need you to come into my office to talk about your blood work. It's not good."
When I went to see her, she told me my blood had showed anti-centromere antibodies. She diagnosed me with limited scleroderma. She spent all of 15 minutes with me (I saw her checking the clock. I am sure this is what the insurance will cover, only 15 minutes, but seeing her check the clock made me mad) and didn't tell me much about sclero at all, except that it may get worse, it may not, there is no way to tell.
Then she scheduled me for a PFT with diffusion capacity test and told me to come back in 6 weeks.
Meanwhile, I also found out that a first cousin of mine also has scleroderma, although I don't know what form he has. I suspect it's diffuse. He got it late in life and it has caused him many problems. I also have a niece who is 5 years younger than me who has Raynaud's.
I read as much about scleroderma as I could. I called every hospital in a 20 mile radius to find one that could get me in for the PFT test quickly; I had the test about a week ago. I passed with flying colors, with my PFT with Diffusion capacity scoring 124% of predicted. <whew>
I also had an upper GI done several months ago, just as a baseline for the lap band.. all is well in that department, no esophagus issues. <whew>
Also no reflux, no constipation, diarrhea, or gastro issues.
Since then, I have read anything and everything I can on Scleroderma, the different types, CREST, etc...
and I have discovered that I have the little redspots "telangiactasias"? I have a few on my fingers, palms, and about 6 tiny ones on my face, mostly on my lips. I also have 3 on the inside of my lower lip.
I also have the stiff, somewhat swollen fingers in the morning. This improves as the day goes on. (No pain, just some swelling and stiffness.)
So, for now, my symptoms of the limited Scleroderma are:
1) Raynaud's in fingers, toes and tongue
2) Somewhat swollen, stiff fingers with no pain, in the morning
3) Small amount of "telangiactasias"?
5) "Tired" upper arms, and some tingling in my hands and forearms (not all the time).
As far as the hand tingling, I think it's more carpal tunnel. The hand x-rays did show some slight narrowing. I attribute this more to many long hours on the computer with my keyboard tilted UP-- which is the perfect way to get carpal tunnel-- but its the only way I can type, as I have to look at the keyboard. (I am a 2 finger typist.)
Needless to say, I do not want to have ANY MORE symptoms or complications from this disease!
I do not want it to progress.
As a result, I have looked into some anti-inflammatory diets, and have started down that path. My blood work also showed that I am low in vitamin D, so the general practitioner put me on a prescription dose, 50,000 iu once a week for 3 months. They also put me on a b-12 supplement. I have also tried to eliminate stress from my life, and I am finding this impossible. (I am living in my late mother's home, which is going to be sold, so in 2 months, I need to move AGAIN.)
My fiancÃ© is now unhappy in this state and wants to move back to his home state. He also has health problems ( heart problems, diabetes, etc..) so I constantly worry about him.
I have another beloved cat (17 years old) who is also becoming ill.
I am trying very, very hard to mitigate the stress, eat right and get some decent sleep, but with all of this going on, it seems like a losing battle.
I am one of those people who does everything for everyone else, and I have have nothing left for myself. This has to stop.
I think I have had autoimmune issues brewing for years; after all, I got the Raynaud's in 1998; but I think the stress and upset that I have experienced since 2004 really set it in motion, and then the surgery last January, the move, my mother's illness and passing, all put the icing on the cake. that is just too much for anyone to have to endure in a short period of time.
Thanks to this site, I have found a team of sclero experts in my area who actually run some sort of Scleroderma program; that's all they do. They are located about 10 miles away so I am lucky.
They require a whole battery of tests be run before they even book an appointment to see you, so in mid July when I go back to see my rheumatologist, I am going to ask her to order all of the tests the scleroderma program requires and then to give me a referral to see them. I really dont care for my rheuaetologist to watch the clock when she tells me I have a life changing disease. I want to see the panel of experts, and I won't rest until I do.
So, that's my plan going forward...
I just wanted to introduce myself to this community and say THANK YOU for having this place, because right now I feel very alone.
I go back and forth between feeling strong, Like I am going to kick this thing, to feeling scared. I really have nobody to talk to about this. I have no support.
Thanks again for taking the time to read this long post, and I would love to hear words of wisdom and especially success stories.
If anyone ever needed a hug, it's me.
Posted 18 June 2009 - 08:28 AM
Wow, what a terrific historian you are!! Your post was so very interesting to read. I'm so happy you are here with us, and that you've already benefited from this site by finding a sclero expert to see.
I'm ever so sorry for all that you are going through. I'm glad that at this point your symptoms are not overly serious, and I love that you are an advocate for your own health.
I too get the ocular migraines. Just had one yesterday, with bright yellow/orange zig zags around the lateral side of my left eye only. Lasted only 5 minutes, then tried to come back for a few seconds and stopped.
I also have CREST and have the R, E, T, and a bit of the S.
I look forward to knowing you better, and welcome!
Posted 18 June 2009 - 10:15 AM
Here a big ((((((((((((((hug))))))))))))))))) and a warm welcome. Girl - you've been through the mill, I must say. Not only with your physical problems, but just life in general. I was especially sorry to read about your mother. Some more hugs to you on that one.
It certainly sounds like you have been doing your homework and are headed in the right direction. Seeing the sclero specialist is very important especially since your current rheumatologist is a clock watcher. My first visit with my rheumatology was an hour! I had already had blood test run and then when I walked in I handed him 3 pages of symptoms and a history of the past 9 months. (My sclero came on really fast) He did a physical exam and within 30 minutes diagnosed me than spent the next 30 minutes talking about "what's next". I hope you find a doctor that treats you the same. It's a good feeling that a doctor actually cares.
So let us know whatever you find out on the test results and doctor visits. In the meantime, join in on the conversations and let us learn more about you.
Big Hugs to you Darlin'
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 18 June 2009 - 11:05 AM
I'm sorry to hear about the passing of your mother. You've sure been through a lot lately. Hopefully, things will ease up for you soon. You have come to the right place for moral support and factual knowledge about scleroderma. A lot of stuff surfing the web can scare you to pieces... my advice there is don't do it! A good doctor is definitely key, and I have no doubt you'll end up with the right one for you.
Posted 18 June 2009 - 10:40 PM
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 19 June 2009 - 02:43 AM
I'm just chiming in with a welcome too.
I'm sending my hugs in memory of your cats. We lost ours just about the time I was diagnosed (she looked just like my avatar) and are facing the fact that our oldest border collie is slowly coming to the end. So my hugs are warm, but a little tearful. I'm sure you'll understand.
Have you had a chance to explore the site yet? We have a good section on Raynaud's and also on Emotional Adjustment and Coping Stratagies.
I had to smile when you called yourself a hypochondriac. I've just learned a new word: cyberchondriac! You just can't believe everything you read out there on the web (well, with the exception of our site, of course). You sound like you have already figured out that sometimes you have to actively pursue a correct diagnosis, check things out with the doctors, be proactive. We'll all keep our fingers crossed that you never have another symptom.
Warm hugs (again with the hugs!)
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 19 June 2009 - 05:17 AM
Thank you for taking the time and courage to tell us your story. I am sure that we can all relate to some part of it. I can sympathize with your pain of a long diagnosis, and am so sorry to hear of the loss of your family member and kittys.
I think that you have made a good start by finding a doctor that you can trust. With all of your moves, I would recommend that you keep record of all of yours test. (blood, exrays, mri's, ect.)
For me, it helps to take it one day at a time. If I have a really bad day, I just keep reminding myself that tomorrow has potential to be a good one.
Your journey with scleroderma will most definately be different that anyone elses, so stay in touch with us and ask questions. The more you talk about it with others who understand, the more you can understand how this illness effects you personaly.
I always try to keep in mind that this illness doesn't define me, but it is how I deal with it that defines me.
I look foward to hearing more about you. Take extra special care of youself.
Big gentle hugs~
Posted 20 June 2009 - 11:22 AM
Thanks to all of you for the warm welcome.. it is so very appreciated!
I hope that you dont mind if I reply to all of you in one post; it has been a long day and I could use a nap.
It will take me a while to sort all of this out, but one thing I know for sure: I am a pro-active, take charge type of person. I like to absorb everything I can ( as knowledge is power ) and question anything I dont understand. I do not put blind faith in doctors for small things, and I certainly woudlnt do that with a big thing. ( even when one of my cats gets sick, I am all over it, researching, learning, questioning the vets, etc.. )
One day at a time, I will make sure that I find something to enjoy about life, because nobody, sclerderma or not, can afford to waste a day without taking some enjoyment in it.
Again, thank you for the welcome and the support.
( Jeannie: I am going to go love up one of my kitties now.. much love and blessings to your furr babies )
Posted 20 June 2009 - 12:41 PM
Posted 21 June 2009 - 02:22 AM
Welcome and you have expressed yourself very well in your post. I have diffuse sclero and am into year 2 and as Erin said on a bad day think tomorrow will be better.
I feel for your loss of your beloved cats, I had 2 as kittens, a little girl who died at 9 and a boy who died at 17. Now my husband and I have had our present cat for 9 months, she moved herself in and is 3 years old. She's a beautiful little dumpling who loves to purr and dribble on you. You know when you have a fabulous pet that at some point they're going to break your heart but what can you do?
Look forward to hearing more from you and take care.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 23 June 2009 - 04:59 AM
Thank you so much for your kind words, though I must say a book on my life would be quite boring! I like to do quiet things like read, birdwatching, etc.. I don't know that anyone would want to read it! However, if I do ever put thoughts to paper, I will contact you.
Posted 23 June 2009 - 05:02 AM
So we share a love of cats.
I agree, when a "new furr ball of love" comes into your life, how can you resist? I just adopted 2 from a shelter.. one was about to be put down because he is partially blind in one eye.. yes, that was the reason he was almost put down! I brought him home and he is a total joy. his name is Barney.
Thank you for your encouragement. You take care, too!
Posted 23 June 2009 - 06:57 AM
BEING SO CHEERFUL KEEPS ME GOING
Posted 25 June 2009 - 05:42 AM
Welcome to Sclero Forums! And here's a whole bunch of great big (((((((((((((( hugs ))))))))))))!
I would imagine with all that stress, you're probably actually pretty good at dealing with it by now, and could teach us a few tricks on how to handle it better, which is of supreme importance with scleroderma.
What are your favorite techniques for calming down and easing the choppy waters?
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.