Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

New to Forum; Seeking Advice/Encouragement


  • Please log in to reply
14 replies to this topic

#1 LisafromMass

LisafromMass

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 07 September 2009 - 03:12 AM

Hello everyone,

First, thank you for taking the time to read my lengthy post. I've been scanning this forum for a couple of days, but was hesitant to post before now.

I'm sitting here in my home, alone on Labor Day, having spent the weekend thinking about all of the 'information' or there lackof, given to me by my primary care physician, dermatologist and rheumatologist over the past several weeks. I guess I should share my symptoms with you, first and foremost:

Intermittent discomfort in my right elbow and left knee
GERD (I was diagnosed with this years ago, and have been taking Omeprazole 20 mg 2x day, which keeps any symptoms at bay)
Telangiectasis on the palms of both hands (not a bright red, more of a pinkish tone)
Fingernails turn a slight blue when my body is cold (not sure if this is considered Raynauds - It's only my fingernails (or the skin underneath) and not the entire finger - also doesn't turn all three colors).
Stinging sensation in the tip of my right index finger (of course it has to be the mouse finger)
Strange sensation in the bottom of my feet and certain toes upon awakening (when I take a few steps first thing in the morning, it feels like a strange tingling sensation, then it goes away for the day).

How it began - I visited my primary care physician with complaints of joint discomfort. They didn't seem to take my complaints too seriously, but agreed to perform some blood tests. Turned out, I had a positive ANA 1:160 SPECKLED and an ESR of 47 (I was recently re-tested and the ANA is now 1:80 SPECKLED and my ESR was 31). The doctor mailed my blood test results to me with a note that said "ANA and ESR could be indicative of an autoimmune disorder. Likely cause is recent surgery (my gallbladder was removed in May, with subsequent ERCP in July), as neither is significantly high. We can repeat again in 1 month if joint pain continues." Well, the joint pain continued to come and go and I pressed the doctor to run some antibody subsets - scl-70, anti-centromere, RNP and Smith were all negative. At this point, they referred me to a Rheumatologist.

I visited the rheumatologist two weeks ago, at UMASS Medical Center in Worcester. She checked my nailbed capillaries with a special light and gel and said everything looked normal. Felt my joints and said things seemed fine. Asked me to return in January, to re-check hands (did not confirm or deny blue fingernails were associated with Raynauds). Only looked at one of the blood vessels in my hand and said it was fine. I followed up last week with my Dermatologist, and asked her to look at the palms of my hand. She confirmed that they were Telangiectasia and said, very matter-of-factly, that they were a symptom of Scleroderma,but mentioned that my Telangiectasia appeared to be "within normal limits." I was really confused by that statement - I thought any Telangiecatsia on the hands were a 'bad thing.' Of note: I am very fair skinned - not sure if that makes a difference. I asked her what changes I should be on the look for and she said, "well, that's difficult to put into words." Huh? I left there upset, confused and feeling defeated. Here, I have seen three different doctors, two of which are specialists...and no answers.

This has been a very trying time for me. Part of me wonders if I am blowing these symptoms out of proportion and could this be Scleroderma at all? Everything I read on-line points to Telangiectasia of the hands being associated with Scleroderma. Could they be caused by something else? The doctors do not answer my questions. They are taking a 'let's wait and see' approach. Honestly, the scenarios that run through my head frighten me more than enything else. I am most afraid of becoming disabled and being unable to work. I've needed so badly to talk with someone. I have no immediate family left and my husband, well...he's been gone all weekend. I've never reached out to strangers before but I feel after reading some of these posts, that you folks can truly understand what I am experiencing. I'm really not sure where to go from here and I'm looking for advice. I'm on the cusp of my 40th birthday and I am scared of what may be awaiting me down the road.

Thank you all for your time. I respect each of you for the struggles you are going through and I wish you all well.

#2 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 07 September 2009 - 05:30 AM

Lisa,
Welcome Darlin! You have certainly found the right place to reach out to strangers. Once you become a member of ISN, you are no longer a stranger. Some of us may be strange, but strangers we are not.smile.gif

It does sounds like you are on the right path to getting a diagnosis for whatever is causing your symptoms. As you have probably already picked up from reading the posts, scleroderma is a very difficult disease to diagnose. Some people can go years before diagnosis and others can get diagnosed pretty quickly. I have a friend for whom it took 8 years and then me - it only took 8 months from the onset of symptoms. A lot of that has to do with how fast the disease progresses and how quickly symptoms appear. Some people can have Raynaud's for years before a diagnosis but then just 5 to 20 percent of people with Raynaud's phenomenon subsequently develop scleroderma (Raynaud's ISN)

I'm certainly not a doctor nor do I have medical training, but I would guess that the fact that your fingernails turn blue with cold it a mild case of Raynaud's. BUT - since your rheumatologist didn't see any problems in the Nailfold Capillaroscopy, then maybe not. Now I'm sure you're really confused. sad.gif

The stinging sensation in your mouse finger could be caused by that being your mouse finger and a little carpel tunnel syndrome (CTS). I testing positive for CTS when I went in with tingling and numbness in my right hand's fingers. Your telangiectasia could be caused by a number of things. It doesn't seem to be limited to just being a symptom of scleroderma. If it is due to scleroderma then it could fall under CREST.

Because you are working with so many doctors already, you have already established good resources for any future or worsening symptoms. Just keep track of how you feel and if new symptoms develop or current symptoms get worse, give one of your doctors a visit. At this time, you just need to relax, take a deep breath and enjoy life. Dont' worry about disability or anything negative. I was diagnosed 6 years ago with systemic scleroderma and have many, many areas of involvement (heart, lung, GI, Raynaud's, etc); however, I have a great life, I AM NOT disabled and I still work. Stress and anxiety can only make things worse, so grab a cup of tea and a good book and enjoy your Labor Day. Personally, I think it should be called NO Labor Today. I'm certainly not going to labor today.

I'm so glad that you have reached out to us. I'm sure you'll hear from others. In the meantime, here are some ((((((((((((BIG HUGS))))))))))))).


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 LisafromMass

LisafromMass

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 6 posts

Posted 07 September 2009 - 06:52 AM

Thank you so much, Janey. I was tearing up reading your post, just because it's so good to know there are people out there who truly care. I am trying not to let this get the best of me, but boy, it's a scary proposition.

The thing is, I've never been one to take my life for granted, having lost my brother when he was 38 and I was just 21. I want to live, and live fully. I guess I just need to take things as they come.

For now, I'm going to take your advice and get that cup of tea.

Bless.

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 07 September 2009 - 09:01 AM

Hello Lisa

Welcome to the forum! Even if you never develop scleroderma you're one of us now! :D

Having symptoms and no exact cause is hard, as is being told you may/not develop an autoimmune disease such as scleroderma. With this sort of information it's hard to know how to feel and what to do so I would suggest doing the one thing you can do and that's live your life. Let what may/not develop remain in the background until such time as it declares itself which it may never do.

I have scleroderma and Raynaud's and am disabled nevertheless I have a perfectly wonderful life, it's just different to what it was. Don't worry about the disabled thing because even if you did develop scleroderma no one would be able to tell you how you'd progress as everyone is so different. Take me and Janey for instance, I am disabled and no longer work whereas she works and is not disabled.

As Janey has said you have a good network of doctors on your side should anything else develop and of course you now have all of us here either way. There are others on the forum who are in a similar situation to you with no firm diagnosis and hopefully they will chime in as well.

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#5 LisafromMass

LisafromMass

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 6 posts

Posted 07 September 2009 - 09:18 AM

Thank you so much, Amanda. I'm absorbing everything that you wonderful folks are saying to me and continuing to hope for the best.

I was thinking today how my mom used to tell me that I will not get more than I can handle. I can only hope that she was right.

#6 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 07 September 2009 - 04:06 PM

Hi Lisa,

Just want to chip in with my support. It's tough to live with uncertainty, especially without the greatest support system. For ten years I've never had a definitive diagnosis (not too surprising, considering I've never seen a rheumatologist), and that didn't bother me much until very recently. After reading your post I asked myself, well, why didn't it bother me? And I guess the biggest reason was that I didn't spend much time worrying about things that might happen in the future; maybe I was in denial, but I always thought that the worst complications could never apply to me. (And hopefully that's true!)

My advice would be to settle on a doctor you trust and then just to relax (easier said than done, I know) and try to be patient. Having a diagnostic label slapped on your chart doesn't change you and it doesn't change your medical condition. It is important to have regular screening tests for complications if you do have scleroderma, but even then it's perfectly possible to have the tests done periodically without having an actual diagnosis, which can have its downsides. This was what my primary care physician was doing with me until now. A lot of people with scleroderma live very long, healthy lives, but that's not the perception.

We don't know what the future will bring, ever, but chances are the things we worry the most about won't ever happen, or if they do won't be as bad as we thought. Your mom was right. And unexpected good things can happen, too!

Big hug,

warmheart :)

#7 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 07 September 2009 - 06:06 PM

Hi Lisa,

Just another welcome, a few more hugs, and another "don't worry, be happy." B)

There are some real advantages to not having a diagnosis in your medical records and some of them are financial. No diagnosis, no pre-existing condition. No diagnosis, all sorts of insurance premiums don't go up. My favorite? No diagnosis, I don't have it. (Little happy dance here. :lol: )

We all get frustrated, when we feel like there is something wrong and aren't getting any answers. I sure did. I've come to realize that it would be irresponsible of a doctor to give a diagnosis he isn't sure of and to start treatment without it being warranted. Watchful waiting is probably the safest course for you. Even with a diagnosis, there is an awful lot of that!

I'm glad you found your way here - we'll wait with you, OK? You've got a whole bunch of new friends who are here for you.

Warm hugs again,
Jeannie McClelland
(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

#8 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 07 September 2009 - 11:15 PM

Hi Lisa

Just wanted to say hello to you. I felt a bit like you when I first came to the site because I'd never joined this type of forum before but I have made lots of new & understanding friends.
It is difficult when your doctor seems to sit on the fence, my own Rheumatologist is very much like that and tends to wait & see which is not always easy to accept. But gradually has time has gone on he is beginning to listen to what I say and takes action.
Like the others have said getting on with things & trying not to worry about the what ifs is important but not easily done. sharing things with others does help.

Take Care

Jensue

#9 LisafromMass

LisafromMass

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 6 posts

Posted 08 September 2009 - 12:31 AM

Many thanks to all of you for your kind words and hugs. I can't express how much it means to be able to reach out to you folks. I've needed to hear (or read) those words. It's keeping me strong. You are all correct - I cannot predict what the future will bring. I do know that the idea of having any disease has opened my eyes to trying to live each day to the fullest. I just can't let whatever this is bring a halt to my life. I'm going to keep pushing forward and will try to do this group proud!

I'm hoping to talk to my rheumatologist again this week. I had some pretty terrific joint pain last night. I'll keep everyone posted.

Hugs back to all of you!

#10 Kamlesh

Kamlesh

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 315 posts
  • Location:Dublin, CA

Posted 08 September 2009 - 10:34 AM

Hi Lisa,

You are behaving right way. Scleroderma is so much damaging disease that I rather be more pro-active than reactive. One key thing in managing scleroderma is to treat aggressively as soon as possible. Scleroderma, if untreated, can have significantly damaging effects on various organs including lungs and digestive tract.

If necessary, I would take second opinion and not wait till January.

Take care!
Kind regards,

Kamlesh


#11 Deb1million

Deb1million

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 08 September 2009 - 10:39 AM

hello Lisa
Im glad to see from reading your posts, that you are already feeling more positive now than you were at the beginning. Im so glad you founbd us all, I felt the same when I stumbled accross this site after a surprise diagnosis of systemic scleroderma last December. I also have long term type 1 diabetes, lupus. kidney failure, sarcoidosis, autoimmune hepatitis and a raft of complications and unrelated things such as a cyst in my spinal cord. And guess what - Im so active nobody can keep up with me! Im sure its due to refusing to allow stress into the equation. A positive state of mind is the key, and I think you have that, and you will be fine. I know it can be worrying and frustrating, but I like Jeannie's advice about the benefits of no diagnosis. :lol:

Stay with us and keep posting, its a welcoming place

Debs B

#12 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 08 September 2009 - 01:06 PM

Hi Lisa

Welcome...be sure not to read up on everything on the internet...we've all been there, done that, not going back. ;)

You've come to the right place, you can be certain of that! You'll find excellent moral support and even more importantly, factual knowledge here. Someone always understands what you're going through and can always seem to help answer our questions.

Raynauds does not always have to turn colours, oddly enough. Sometimes, fingers/feet only turn white, not white/blue/red, etc. No clue as to why, just that's the way it can be...still on my list to try to discover whether or not it has an bearing upon severity but not looking like it so far. I can't help answer your question about your nails turning either, sorry, no clue whether or not that could be Raynauds either? Others will chime in.

I know it's easier said than done, but do try really hard not to overstress yourself. When our minds run away on us, everything compounds and compounds...not good for anybody, not matter what ails them, or not, as the case may be.

Hope you enjoyed your tea yesterday...and had an even better one today!
Sending good wishes your way!

#13 Vee

Vee

    Silver Member

  • Members
  • PipPipPipPip
  • 215 posts

Posted 09 September 2009 - 01:51 AM

Hi Lisa,

My name is Venessa and I live in Michigan. I am now 47. about 12 years ago I started having issues with breathing. It was very slight, and the only way I could explain it to my doctor was that it felt like I had to yawn, but I couldn't get enough air to satisfy the yawn. So he did a mini PFT (pulmonary function test) and decided that I had exercise induced asthma and put me on asthma medication. Just about the same time, my mother was diagnosed with scleroderma. Her first signs were blue fingers. About a year later, I noticed a blueness to my fingers when my body got cold, (I AM my mothers clone!) So, I took it upon myself to go to a rheumatologist and ask her to test me for sclero. She was reluctant to do so, BECAUSE my mother had sclero. She said it was very rare for it to happen to two people in the same family.
Well, lo and behold, yes I did indeed have sclero. I think she took the news worse than me! :blink: I knew deep in my heart that I had it, I just wanted it on paper so that my doctor's would take me serious about my lungs and the stiffness that I was starting to notice. My greatest fear at the time was also that I would have to quit working, I am a mother of 3 beautiful daughters, one of which will be wed this Saturday! Yipee!

But anyhow, to make this shorter, and it's been a very long road, that rheumatologist was humble enough to tell me that she knew almost nothing about sclero and said that she would refer me to the best that she knew, which was Dr. Maureen Mayes! I can never thank her enough for sending me to her. But Dr. Mayes soon moved to Texas on me and I was left once again searching for the perfect doctor for me. Since then I have chewed up and spit out many. I guess what I'm trying to tell you, is to never give up on that search. Even if they have a reputation for being a "great" doctor. If you don't click with your doctor, you're just never satisfied. You have to find a doctor that wants to work WITH you for your health. One that is open to YOUR suggestions as well as you being open to theirs.

Nobody knows what your body feels but you, so the doctor can't just assume that because you have knee pain, it's the same pain as the patient that he just saw 5 minutes ago. Get a doctor that REALLY listens to you, not standing there with their hand on the door. And I have had that exact thing happen to me. Needless to say, that was my last visit to that office, and that person was considered one of the best! Oh well. Sorry, I'm rambling. So to end this up, a lot has happened since then, but here I am, 11 years after my diagnosis, still working, I'm a hairdresser.

My fingers have definitely changed, but I have just changed the way I do things now. I'm slower, so I add more time to my bookings. Yes there are things that I can't do that I used to do. But I'm still here! Enjoying life. When I was first diagnosed, almost everything I read told me I was going to be dead in 5 years. Well that put me on a road to depression and woe. So after that 5 year mark, I realized that I was still here and I wasn't going anywhere. It was like an ice bucket got thrown on me. I realized I was bringing everyone else around me down with my self pity, so I decided I don't have time for this sclero.

From then on, it would take backseat to my living. Oh it's still there, but it comes along with me everyday to do with me what I have to get accomplished, not me riding on the back of IT, letting it guide my way into doing nothing with my time. I still garden and I have picked up my old love of drawing. It has actually made me realize that there are some very important things in life to take notice of and to slow down and, yes, smell the roses, which I do every time I see one!

I'm sorry this is so long, but I'm just trying to give you some hind sight of this. No you won't have the same story as me, but you WILL have your own story. And it's up to you how that story unfolds. Yes you may have issues to deal with along the way, but the best thing I can say to you is to stay positive as best you can. Find something in everyday that makes you smile, and for goodness sake, watch or read something funny EVERY DAY!

I have my bad days, and my pity parties sometimes still, but I don't let them last long. If I feel like crying, and I have many times over something like not being able to open my homemade strawberry jam jar, but then I get over it and move on. Always keep in mind that no matter how bad it is, there is always someone worse off. This is a roller coaster that we are all on, it can be scary, but it has its' high moments. I think I've actually become a better person due to this disease. It's a love hate relationship, but it's mine so I take care of it. I wish the very best of life for you. And many happy times to come. Please don't waste it worrying about the "what if's". Just take one day at a time and just be you.
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#14 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 12 September 2009 - 03:42 AM

Good old Systemic Sclerosis sine Scleroderma is what brought me to this Forum in the first place. The doctor who finally diagnosed me (long may he prosper)had a special interest in this type of scleroderma. I think the first hit on my first web search for information was an article he wrote stating he felt this form was much more common than previously believed and the hardest to diagnose. Isn't it nice to be 'special'? ;)

Warm hugs,
Jeannie McClelland
(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

#15 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 12 September 2009 - 04:34 AM

Welcome to the forum. This is the place I came to right after I was diagnosed. Now to further confirm to you that you are not alone in your struggle to get diagnosed. It took me a year of going from doctor to doctor to doctor to finally get a diagnosis. I knew something was wrong and kept going to different ones until I finally got in front of a neurologist who took me seriously.

Where you and I are similar is that my first symptom was that my feet and hands tingled like they had fallen asleep. Then it changed to where they went numb. Then from there it went to sharp pains that would hit randomly in my legs and arms. It felt like I was being stabbed from the inside/out. Well I let my fingers do the walking on the web and searched peripheral neuropathy, as that's what it's called when your feet and hands tingle and then go numb. I sent out an email for help in finding a doctor and the head of the Peripheral Neuropathy association from New York called me and gave me the name of the best neurologist whose specialty was this in my state. He is the one who saved my life. He listened to me; he believed me in what I was telling him; and he took me seriously. He treats the neuropathy, which has now damaged my muscles up to my knees.

Well the neurologist wasn't happy with the "puzzle pieces" and was sure other things were going on. So he had me see a rheumatologist. She immediately diagnosed Sjogren's (did a lip biopsy to confirm); Raynaud's, Systemic Sclero (confirmed with blood work and a biopsy of my ankle); Polymyositis, and Hypothyroid.


The moral of the story is DON'T GIVE UP. Keep going to a doctor until you get in front of one who takes you seriously and also is very versed in scleroderma. Just because they are a rheumatologist doesn't mean they know much about this disease. Get in front of one who knows all about it. Also only deal with other doctors (cardiologist; pulmonologists; oncologists; etc) who also know about the disease or it's simply a waste of time. This disease affects so many different areas of our bodies we eventually have a team of doctors that we see depending on what organ is involved. Make sure these doctors know what they're doing as sclero is usually the reason the other organs are compromised.

I wish you luck and hope that you can see a doctor who knows what they are doing. Depending on where you live I'm sure through this forum you can get the names of doctors in your area that would be good.

Please keep us posted on how you are doing.

Warm hugs,
Peggy