Jump to content


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


Photo

Blah with a side of blah and some questions on top

scleroderma

  • Please log in to reply
4 replies to this topic

#1 Thoughtpets

Thoughtpets

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 18 December 2014 - 07:27 AM

I hate this disease. I know it could be worse. I know it's better than being 6 feet under. But I still hate it. It's confusing, overwhelming, effects too many areas, hard to figure out.

Outside of that, I do have some decent news. I finally was accepted in to the office of Dr. Maureen Mayes. I have an apt. end of March. I have my first pulmonary apt January 29th. They ordered a high res CT scan, pulmonary function test. I had already supplied a CT angiogram that the hospital did when I went in for other heart/chest pain issue. That CT angiogram showed 6 nodes (all 4mm and under), but just 9 months earlier I had CT angio scan that only showed one node (4mm). I am not sure what to think about those developments, but my primary practice doctor assured me it was fine and probably nothing out of the ordinary (said maybe I inhaled something and that CT's show every little detail).

Couple of questions:

When I sleep heavy (most nights), I wake up and take a few deep breaths and feel this low deep rumble. Then it clears up after I take those initial deep breaths. But I have had what I think is random pleurisy type pains come and go over a long period of time. I also started having reflux problem this past 6 months (thank you limited systemic scleroderma). I have had a few bad colds and notice that the drainage has made me do this weird cough choke thing sometimes. Like I am unable to cough up the quick drainage so I kind of start choking on it? Does that seem weird or familiar to anyone else? Maybe even feeling like I aspirate as I am trying to cough up stuff. I feel like this all seems weird and it's just me, nothing related to scleroderma.

I continue to have crazy strong Raynaud's on full hands and feet. I started taking amlodipine for the irregular heart stuff, but it's supposed to take edge off Raynaud's. Don't even know what to think about the heart issues. I see a cardiologist now but I was fine over a year ago, and now I have a tiny LBBB and a small leaky valve. I get very slow heart rates (down to the 40's-50's, not the least bit athletic) and sometimes very pronounced heart beats. Like my whole upper body feels such heavy pound with each beat, but not like a palpitation - more like a slow motion. Dumb, I know - but it's annoying and no clue why it does this. I get short of breath going up any hill or stairs, with legs that burn. Attribute that to just feeling out of shape, even though I am in my 30's and not overweight or underweight.

When I swallow sometimes I feel each drink and bite of food pass by a sore spot on the right side of my lower esophagus. It's always the same spot , but so far it happens on random days for the full day. I had an Upper GI a while back and nothing showed up except a Telangiectasia looking red spot. Can that maybe be what causes pain? Anyone have one in their esophagus that can tell me more about it?

I am down to one meal a day because I feel like I can't fit any more in than that. Between the gas, reflux, digestive slowness - eating once a day seems to help me feel better.

Skin seems to be okay so far, but very dry (but it's always been pretty dry). I don't hardly ever drink water so I feel like it's probably a dehydration type of dryness. I can say my scars and random freckles are getting darker, but that is about it.

I get my kids colds and sickness easier and it hits me harder. I pushed a heavy vacuum the other day and felt SUPER sore and tired for 2 days after like I had done 4 hours of aerobics or something . I HATE THAT. I feel so tired in general. I am going to ask Dr. Mayes if there is anything at all I can do for the energy. I started working from home and have 3 young kids in school, I can't be without energy. My dad has MS and takes a providgil, anyone here take that for scleroderma? does it help?

Current Autoimmune Meds: Amlodipine lowest dose, plaquinel 200mg 2 times a day. My current rheumy doesn't know anything about scleroderma and is only willing to say I have Connective Tissue Disease. Based on my research, and hoping Dr. Mayes can help me with this, I have limited systemic scleroderma. Primarily based on my symptoms blood test results:

Component Standard Range Your Value
ANA TITER LT 1:160 >1:2560
ANA PATTERN Centromere

Component Standard Range Your Value
SCL-70 AB <1.0 (Negative) U <0.2

Not sure what to expect from my apt with Dr. Mayes, but trying to think of everything ahead of time and get prepared. Any ideas? I just wish this was a more understood disease. It's hard going through these weird things and then feeling alone in the weirdness. Now I need to go find some silver lining and change my attitude and count my blessings!



#2 quiltfairy

quiltfairy

    Silver Member

  • Members
  • PipPipPipPip
  • 165 posts
  • Location:mapleton , Iowa

Posted 19 December 2014 - 04:46 PM

Welcome to the forum Thoughtpets.

First off my Sclero dr. told me to drink plenty of water. I have a glass by my bedside as I wake in the night thirsty. Dehydration could be part of your heart problems. I also drink plenty of other liquids, it does seem to help.

Second, you sound just like I did when I first got my diagnosis. I had a panic attack over every little thing. I learned from this site to stop panicking and to talk to my doctor.

I have a dry cough, it feels like I want to bring up some phlegm but there is none that comes up. My Sclero dr. said I have lung involvement but not to worry about it as I am breathing ok for right now.

I am no expert, I just have Scleroderma just like you, mine is Systemic Diffuse Scleroderma.

I really hope you can relax and enjoy the holiday season.

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 19 December 2014 - 11:24 PM

Hi Thoughtpets,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering so many unpleasant symptoms due to Scleroderma.

 

In order to give you some more information, I've included a link to our medical pages, which I hope you'll find helpful and interesting.

 

It's certainly beneficial to be seen by a Scleroderma expert such as  Dr. Mayes and I hope that your appointment with her will be successful.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 22 December 2014 - 08:26 AM

Hi Thoughpets,

 

Welcome to Sclero Forums! 

 

I'm sure you'll get a thorough evaluation by Dr. Mayes.  As you know, she is a top world scleroderma expert. 

 

Just keep in mind that there are many similar diseases and it is often very hard to sort them out. I try to caution people to keep their expectations very low regarding scleroderma diagnosis, because it is very difficult and often takes years, and about 50% of people with some symptoms of connective tissue disease NEVER get a more specific diagnosis.  So please review our page on Difficult Diagnosis, which also includes another video by Amanda Thorpe.

 

Please keep in mind that I'm not a doctor, in fact I have no medical training at all, and verify everything  I say with a reliable medical source.  Its my understanding that many small nodules, less than 5mm, are very likely caused by infection of some sort (rather than cancer). So be sure to follow through with all your lung tests.  Of course, it is possible to have more than one ailment at a time, and not all of our symptoms are necessarily related to the same underlying cause.

 

Good luck to you as you undergo the tests and exams.  We all know that is not an easy process, and it can drag on for a long time, too.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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.

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 23 December 2014 - 12:39 PM

Hello Thoughtpets

 

Welcome to the forums.

 

In addition to the information you have already been given you might find interesting our articles about   aspiration  which is...pus in the lungs...and is very serious.

 

Autoimmune diseases are diseases in which the immune system is overactive rather than under active and that being the case, scleroderma does not automatically make us prone to illness or infection, however, any immunosuppressant medication can.

 

Shelley makes a good point, they feed all dogs dog food a strange thing to say I know but basically there's no treatment especially for scleroderma so there's nothing to gain by naming it. An autoimmune disease is an autoimmune disease with all receiving the same treatment. Now as a patient I understand the need for a specific diagnosis as will most patients but the medical establishment can be another thing!

 

I hope this helps and take care.


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)





Also tagged with one or more of these keywords: scleroderma