Sign in to follow this  
Followers 0
notlettingo

Just Learning about the Disease

35 posts in this topic

Um nope. I'm definitely talking about Mixed Connective Tissue Disease. Yes, this is an overlap disease as you have stated, carrying traits of both Scleroderma and Lupus, plus some other disease that I couldn't remember. So, from what I can tell, I could have parts of anything. This apparently was concluded by my test results.

Share this post


Link to post
Share on other sites

Hi Notlettinggo,

 

Mixed Connective Tissue Disease is definitely not any sort of a catch-all (often called "garbage can" diagnosis). It clearly indicates the co-existence of two (or more) connective tissue diseases and even has it's own antibody requirements, to boot. So your doctors are definitely taking your illness seriously and you have reached a stage of what is now, at long last probably, a definitive diagnosis that is going to last long term.

 

If it's any consolation, you're probably "more sicker" than folks with "just" scleroderma or lupus. However, given the similarity between the general term of connective tissue disease, and the diagnosis of undifferentiated connective tissue disease, and the fact that many people use the term mixed connective tissue disease when they really mean undifferentiated connective tissue disease, you're going to face your own battle explaining (like here) that you really DO mean MCTD. And then, there's the whole thing of few people understanding any of the words such as lupus, scleroderma or MCTD!

 

When I realize that I'm just getting a glazed stare over any of our more obscure disease terms, I simply explain that I have a very severe form of arthritis. Then people smile in recognition -- as in, whew, at long last, she has resorted to English as her primary language!

 

I'm sorry you have MCTD, Notlettinggo. But it is a very real diagnosis and not just a catch-all. In fact, it is "one-up" from most of us.


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.

Share this post


Link to post
Share on other sites

Thank you for your info. and kind words. As I mentioned maybe in my first post, I am still in the angry phase, but hearing the kind words people (that can actually relate) have for me is really helpful to me. Of course its helpful to everyone.

 

Thank you for pointing out that what I have is a real disease. Yes, I have been suffering unmercifully for years and I keep getting told everything is normal - til now! And now that I have a diagnosis, I want to learn what I can, but I still know nothing. I made an appointment to see the rheumatologist again. I have to be able to ask him questions and where am I at with this disease? I just brought home a bunch of meds he is putting me on and now I want to figure out if they are what other people are taking. I still find it hard to believe that I am not being swept under the carpet as I have been all my life! But to be truthful - nothing really makes sense right now!

Share this post


Link to post
Share on other sites

Hi Notlettingo

 

I'm a little late on this thread but for what it's worth, my doctor told me that Lupus is a 'very close cousin' to scleroderma and often overlaps with it (but not always of course). Therefore, it would not necessarily be uncommon to have symptoms of both diseases and/or more than those two (ie, MCTD). He includes a panel in my bloodwork for lupus too, always checking. Sounds like your doctor is very good that way too.

 

No wonder you feel confused! It is quite understandable how that can scare you and make you sad and/or angry at the same time, especially with having so many emotions to face all at once. Maybe think of the MCTD as bits and pieces only of each illness (and not all 3 fully blown diseases) that have symptoms which need to be treated separately in order to help make you feel better. It's kinda like looking at a blemish on an apple, the whole apple isn't rotten (meaning sick) right (only a little piece of it is)...not that I'm comparing you to an apple in any way, shape, or form of course :) .

 

I am glad you made another rheumatologist appointment, I remember I couldn't get to mine fast enough! I had so many questions rolling around in my head, morning, noon, and night! Don't forget to take some paper and a pen and to go in with all your questions handy or even better, take someone with you to write everything down for you. I found in the beginning my head was spinning and I always forgot to ask this or ask that...only to think about it all the way home again...and once again came the anxiety of not knowing all over again. I know it's hard to believe but things will eventually settle down for you, once you get a better understanding of what is going on. It will also likely help when you know what each medication is for, why you're taking it, and how it's going to help you. I agree with the others, I don't think you are being swept under the carpet this time either. Take care and I hope you keep us updated.


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Thank you all for your posts - your kind words and suggestions. I really appreciate being able to come to this 'site'. I have already felt the comfort one feels when you can share your feelings with someone and know that they can relate and they too need comfort so they know I need comfort! Thank you and yes, I will keep posting and reading posts!

Share this post


Link to post
Share on other sites

I really need some help here! My daughter is trying to convince me to go raw/vegan. Any thoughts on this subject would be greatly appreciated.

 

Thanks in advance.

Share this post


Link to post
Share on other sites

Hi notletinggo,

 

With the anger situation, I was diagnosed in 2007 with scleroderma and then just kind of left to the care of my g.p. I now have a referral to a specialist some years later again so am awaiting a date now. But I too still feel very angry quite often. I think you get too much to take in at once and the brain is just unable to process it and then although you have all this information, it all seems so useless because you just can't get your head around it.

 

I have given up trying to analyze this illness and worrying about what may or may not happen to me in the future as I realised I was just wasting too much of my valuable time wrapped up in 'what if' all the time. Now I try to take each day as it comes good or bad and process and deal with the symptoms from day to day rather than over the long term as it just seemed to keep me angry whereas now I can enjoy some of the nice times I have in between the sleep all day times and the unable to move painful days or the depressed days and unable to breathe days.

 

So my best advice to you is to try and just take each day as it comes, symptoms and all, and try not to focus too much on what symptoms may or may not come in the future as these diseases are so different from person to person.

 

About becoming a vegan that choice would have to be yours alone and I would say unless you have stomach symptoms then I don't see why you would need to change your diet but then I am no expert. But I am sure your daughter is only trying to get you to change out of love and concern. I know how frustrating it can be as well. Sorry I am unable to offer you any better advice on the subject but I hope you are able to come to an agreement with your daughter about what it is that you want.

 

hugs and loves :emoticon-hug:

Queenie.

Share this post


Link to post
Share on other sites

Hi notletinggo

 

Well I have been dieting for a bit now and have cut down on a lot of my meats, but I love my chicken and bacon too much I think to give them up completely. For me personally if I eat a lot of raw veg, I get terrible cramping and gas and then suffer from horrible bouts of diarrhea but this doesn't mean you will do the same. But it is not just meat you give up to go Vegan, you have to give up anything that was produced by animals. Also you will need to look at a lot of the products you use to make sure there are no animal by products in them. The only advice I would give is what I would tell anyone, you have to do what you feel is right for you and not what others think is best, so if you feel you will be better off going Vegan/Raw and it is something you want, then do it. If it is not something you want then don't do it. At the end of the day if it isn't something you really want you will be miserable and not succeed at it very well.

 

Best of luck in your decision!

 

Cheers

Jean

Share this post


Link to post
Share on other sites

Hi NLG,

 

I'd recommend you look at Diet and Systemic Sclerosis and talk to your doctor about it. A referral to talk to a nutritionist would be good too. A quote for the page I've given you the link to says: "In general, most doctors recommend that scleroderma patients follow a normal, well-balanced diet , without the addition of any herbs, vitamins, or minerals. Do not cut out any food groups from your diet, nor go on any "cleansing" diets, since this may accelerate the disease process."

 

What Jean told you about the Vegan diet is accurate. I'd add that you really have to know what you are doing or you will soon run into difficulty getting the variety and amount of proteins that are crucial to good health. As far as the 'raw' diet goes, if you have any dysmotility issues in your GI system, too much fiber can really cause problems. And again, could you be sure that you are getting the proper nutrients in the right balance?

 

There is no diet that is a cure for scleroderma, unfortunately. :(


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

Share this post


Link to post
Share on other sites

Unfortunately for most of us with autoimmune disease, it becomes necessary to do our own research. There are many horror stories of the diagnoses that so many have been through. These diseases are 1. too rare and ; 2. too unique to the individual for simple understanding. The doctors just aren't always aware.

 

Thus, I would advise you to become familiar with test values, etc. You need to (sort of) become something of your own doctor regarding your illness.

 

On another topic: You mentioned that you like to eat raw egg. I may be wrong, but I've heard that this can be a bad idea because eggs often contain bacteria that is killed by cooking.

 

Craig

Share this post


Link to post
Share on other sites

Thank you for your reply Craig -

 

I think I understand what you mean by becoming my own doctor. My rheumatologist just called me to explain my test results. But he didn't really explain them just reinforced that yes I do have MCTD. But I think you might have misunderstood something somewhere - um, I hate raw eggs! Uuugh! Actually when I read that, I think I threw up in my mouth a little bit. LOL But, no, my daughter wants me to go raw vegan, which of course would not include eggs, raw or otherwise. So, ya, thanks, I will be careful.

 

As far as being my own doctor though, I'm so tired and I don't want to face any of this. Right now as I type even, my fingers are sooo incredibly painful - they are frozen, white and the ends keep splitting. I don't know how to stop this splitting or the Raynaud's, I don't know how to make myself better and I don't know how to be happy about this. I don't know how to put a positive spin. The doctor ticked that I don't have depression - well, if I don't present with the classic signs of depression - then truly, there must be no such thing as depression, because man, I'm down there on the totem pole of sadness! But anyway, when I'm looking at everything for MCTD, I just want to go to bed. I don't want to see it, I don't want to believe it, and I don't want to feel it anymore either! :emoticon-dont-know: :crying:

Share this post


Link to post
Share on other sites

NLG,

 

Take a deep breath and relax for a minute. Then take one thing at a time. The more upset you get the harder it will be to control your symptoms. Yes, all of this is scary and overwhelming, but at some point you have to stop being overwhelmed and take back your life.

 

I would start with some daily relaxation exercises - just close your eyes and breath and clear your mind. Then focus on warming up your fingers. I do that by keeping my core warm and by always having gloves and those chemical heat packs (I also have a secretary who is an absolute furnace so she is always willing to hold my hands to give me a shot of heat). Keep your hands and fingers gooped up frequently. When you get a split slather whatever works on it and keep it covered and dry (as in not letting water get to it).

 

If you are feeling depressed get in to see a psychiatrist and then a therapist. There are things you can do, and by doing them you will feel much better. Focusing on how overwhelmed you feel will result in just that - feeling overwhelmed. You will get through this and be okay and the way you will do that is by getting up everyday and finding the things you can do that will make you happy. Another person on this forum once told me about laying in bed, after a long stay in the hospital, and seeing a red tail hawk sitting in a tree outside her window. She was moved by that moment and it stays with her still to this day. Those moments are there, you just have to find them and focus on them.

 

Jill

Share this post


Link to post
Share on other sites

Hi,

 

Sorry about the egg confusion.

 

Are you taking anything for the Raynauds's? There are many different medications that might help - calcium channel blockers (nifedipine), Revatio (a smaller formulation of sildenifil - the same drug as viagra), nitroglycerine cream.

 

Craig

Share this post


Link to post
Share on other sites

:emoticons-yes: Wow, I just had an amazing realization, I am grateful for the Raynaud's, and for my face going numb. For almost all my life I have suffered such cruel pain. Had to work through it - sometimes bringing me to tears, lack of proper sleep, I could go on. But, as Jill says, I have to go on. I have to get through this just like I have gotten through every other obstacle in my life! But, back to the being grateful to the Raynaud's and numb face, before that, for years, I was back and forth to doctors always being told it's in my head, it's not that bad, and always end up calling everything fibromyalgia. Twice, in past years, I was told by physicians that I have the body of an 80 year old. I am now 45. Now, the doctors have a diagnosis, they actually realize, yes, the pain is real - I have finally been diagnosed with Mixed Connective Tissue Disease - as I've said before. But before now, I have been so angry and upset. Don't get me wrong, I'm still angry, I'm still sad. But, I do have to keep going, if for no other reason, but for my daughter! She just turned 23 and without her, wow, my life, would have been so empty. I somehow realized tonight, that I am grateful, because now, I can get the help I need to deal with the pain etc. Thanks everyone, your kind words are amazing. I had no idea a month ago that any of this even existed. Life has an interesting way of getting our attention! :thank-you: Now, I will try to look at ways of being positive. I will try. I will try not to tune out. So, here's to what ever the future holds! :nervous: :unsure: :)

Share this post


Link to post
Share on other sites

Hey, no worries about the egg Craig.

 

It's all good. Anyway in response to your question about med, I have been started on flexeril, novo chloroquine and Adalat XL. The Doctor told me it could take anywhere between 1 and 3 months to see any improvement. I also take tylenol 4 or pain medication and lyrica. I find it extremely difficult to find any relief, but somehow, someway, I will get through this and I will be better for it! I always wonder when life circumstances take a spin - what exactly I am supposed to learn or know. I just know that these are always lessons, either for now or later, they are often things that make us stronger for what lies ahead. At least that's the stuff I try to tell myself! LOL

 

Anyway, as I said earlier, I will try!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0