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Different symptoms crossover diseases


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#1 Lucy H

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Posted 30 November 2009 - 11:40 AM

I just read my last post from about 10 months ago. Reading it is a bit scary since it is clear that symptoms are progressing. Some days I am convinced that I am really sick, other days I just try to ignore it all. Try is the operative word. Maybe one of you who have gone through this too can help shed some light.

Okay, here goes, I am 49. This all started a year ago and has slowly been worsening. My mother's twin had mixed connective tissue disease, so the genetic factor is there. My blood shows an ANA of 1:over 5000. All other blood work is normal. I have Raynaud's in hands and now feet; muscles in thighs and upper arms are really weak-no stamina. After I rest a few minutes I am okay but still strength stamina is very low. Thighs and sometimes fingers/toes ache- nothing else, when I get into bed in evening. Fingers swell all of the time (grew from a ring size 5 to 7). Now I have noticed a pinkish blotchy area on the front and back of my thighs(not hard or stiff- just clearly discolored pinky/purple).

Lastly, a very small stark white round hard bump next to the nail on one of my fingers. My doctor says no to scleroderma, no lupus, no myositis. He said that it's a wait and see. That's frustrating. I don't want to medicate, I guess I just want a label so that I can know what I have and maybe then it will be easier to move on.

#2 Peggy

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Posted 30 November 2009 - 12:40 PM

Wow, when I read what you are dealing with it sure sounds to me (although please keep in mind that I'm not a doctor, I have no medical training) a little bit similar to sclero or polymyositis.

I have terrible muscle pain in my legs and arms which are really bad at night too and wake me up. I also have peripheral neuropathy, where my hands and feet go numb and this numbness goes up to my knees and because of it has caused permanent muscle damage. Whether this will continue to move up I don't know.

Is there a possibility of getting a second opinion? It took me a year of going from doctor to doctor to finally get my diagnosis. I now have 6 differen autoimmune diseases.......systemic scleroderma, sjogrens, raynauds, peripheral neuropathy, polymyosits, and hypothyroid.

What I learned the most during that year going from doctor to doctor and getting one wrong diagnosis after another was that I knew something was wrong and I wasn't going to give up until I got some answers. I finally got in front of a neurologist who was bound and determined to help me and actually listened to me. Some of the doctors I saw would look at me like they didn't believe me.

Keep seeing different doctors until you get answers. Something is going on and you know it because you're living it.

Warm hugs,
Peggy

#3 Shelley Ensz

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Posted 30 November 2009 - 01:18 PM

Hi Lucy,

I'm sorry you are experiencing symptoms and have no definite diagnosis. I know how hard that is to deal with.

You mention "my doctor". Are you seeing a rheumatologist? If so, have you thought about getting a second opinion?
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#4 kaykay

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Posted 29 December 2009 - 10:30 AM

Hi Lucy -
sorry you are so frustrated - and maybe I'm off base on this, but I think that the longer it takes to get a diagnosis the more likely it will be a mild case of what ever. I mean if you have severe obvious symptoms right away, sure you know what you got, but... well, you got it. So maybe take heart in that. You got something, no doubt, let's just hope it's mild and ultimatley containable.

#5 debonair susie

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Posted 01 February 2010 - 11:26 AM

Hi Lucy,

The empathy is definitely something we all have for you in your present state.

When feeling "put off/discounted" by a dr one who is supposed to KNOW more than what they indicate, we certainly understand why you feel as you do!

Shelley asked if you have possibly entertained a second opinion. If the option is there ie: other rheumatologists in your area and you don't have confidence in the dr(s) you've seen, you might just give it a try!

Many of us on this forum, have had to change doctors, in order to "find the perfect fit". It's important for you, the patient, to feel comfortable with your (knowledgable) doctor and feel you are with one who will treat your symptoms...and you, sincerely.

As your own advocate, please don't feel that you don't have any recourse. You can either give this (these) doctors another (honest) try and hopefully you will feel better satisfaction with the next visit, or you can move on. Just don't settle, as you ARE important and deserve the best possible treatment you are able to get.

In the meantime, keep us posted on how you are doing?
Special Hugs,

Susie Kraft
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#6 pawndy

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Posted 26 February 2010 - 04:56 PM

I understand how hard it is not having a diagnosis. I too just wanted a name to put with how I felt. Now I have too many names. It took some time and several doctors before I had a diagnosis. Most doctors would just say it was my weight or I was just depressed. I was not taken seriously until I was hospitalized because I could not breathe.

I hope you find the right doctor for you; you get the right diagnosis; get the right treatment soon.

Your Friend
Pawndy
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#7 agilitygirl

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Posted 27 February 2010 - 07:29 AM

I am a new member, but I have to agree with the possibility of getting a second opinion. I feel really fortunate. I have had a great experience with three of my doctors - an opthamoligist, my general practitioner and my new rheumatologist. They are really working well together. I did go to another opthamoligist who was very curt with me - I never went back. So if you can, try another doctor. They are human too, so one person might really fit for you while another will not. The type of relationship we have with our doctors makes a lot of difference. Ever notice how easy it is for you to ask questions with certain people and not so easy with others. I think it works the same way with doctors.

Hope you find some answers soon.

#8 Lucy H

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Posted 15 March 2010 - 08:59 AM

Just want to thank all of you who responded to my post. Finally got my diagnosis- limited scleroderma, severe vitamin D deficiency which may be adding to muscle pain. Anyway, I actually do feel better now that I know what I am dealing with. I can now do my research and partner with my doctor to see what may be beneficial in terms of treating current symptoms and future treatments if needed. I believe that in an effort to minimize fear and uncertainty many doctors wait too long to actually verbalize a diagnosis to patients.

It is true that these rheumatologic diseases are difficult to pinpoint but many times the symptoms are clearly indicative of a specific condition. I also believe that most patients would appreciate candor from their physicians that these diseases have blurry lines and are difficult to definitively label with a sharing of what the doctor suspects the ultimate diagnosis will be.

Patients are similar to students walking into an exam, if you know the subject matter that you will be tested on, the fear of the unknown is allayed and you can concentrate on studying. If we have a diagnosis or a strongly suspected "label", we can stop wondering what our symptoms might be, we can cease searching the internet for answers that may scare us needlessly and we may actually be able to spend our time and energy aquiring helpful information and support. This forum is an example of that.

Thanks,

Lucy

#9 Lynnie

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Posted 16 March 2010 - 01:28 PM

Hi Lucy,

I've only just read your post. I too am fairly new to being diagnosed with the same form as you, finding out and finding this brilliant place for all the info and support you need makes our world alot easier to live in, as, with the nature of scleroderma it casts so many shadows to the medical teams that try to find out what is actually wrong with us, one thing I feel is very important like Peggy and the others have said to have a good relationship with your rheumatologist and family doctor to be able to be open and free and most of all be understood! Keep posting as we all will try to help the best we can and we are a family of sorts on this site take care and smile its makes all the difference :emoticons-yes: :emoticons-yes:

#10 Amanda Thorpe

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Posted 17 March 2010 - 03:19 AM

Hello Lucy

I've just read your last post and you're clearly an excellent advocate for yourself which has really reaped rewards for you! I am glad you finally have a diagnosis even if it one of scleroderma because as you say you now know what you are dealing with and you can get on with it.

Take care and keep posting.
Amanda Thorpe
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