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Biomarker for Diffuse Scleroderma skin has been discovered!


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New Member Vic


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#1 Vic

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Posted 09 August 2008 - 09:05 AM

Good afternoon. I am new to this forum as of today. So many questions!

First of all, it is my husband that has been diagnosed with limited Scleroderma. He has cResT. He has had Raynaud's for a few years now, but has had such discomfort with tingling and prickly feelings in his hands, face, eyes and feet and numb spots all over his body. After blood work and visit to rheumatologist, she diagnosed Limited Scleroderma, and said the numbness and tingling had nothing to do with this. As for the "T" portion, she looked very closely under his eye and found the blood vessels. Mine are bigger than his! She did do a lung function test, and he was borderline. He plays raquetball for hours. This diagnosis has been very strange and quite disturbing to my husband who just wants to forget about. Our life insurance policies just needed renewal, and he was declined because of this disease.

I am still having difficulties understanding a disease that turns your fingers white and also affects your lungs. Could it be that at 52 years old he is just being diagnosed or has he had this from the onset of the Raynaud's. Can you just have the Raynaud's and not be bothered by anything else?

I don't want to ramble. I have read through some web-sites to try and understand this better, and really need to understand this for the life insurance issue also. Can anyone shed a little light on this?

Thank you so much.

#2 janey

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Posted 09 August 2008 - 09:27 AM

Welcome to the ISN Forums!

I'm sorry to read about your husband's diagnosis of cResT. You mention the tingling and numbness which many of us have experienced. Mine was due to carpal then the Raynaud's. What were the results of bloodwork? Just curious.

You ask if you can have Raynaud's without scleroderma. I'm no doctor, but from the information on this site and other, the answer is YES. There is primary and secondary Raynaud's. Secondary Raynaud's is usually due to a connective tissue disease such as sclerdoerma. I've provided a link to our Raynaud's page that will explain the difference.

Due to the life insurance issue that you are experiencing, I would definitely have the rheumatologist strongly justify the diagnosis. I don't know for sure, but I wouldn't think that primary Raynaud's would flag a life insurance policy - of course I may be way off base.

I'm glad that you have joined us. I'm sure others have had similar experiences so maybe you'll get better advice from them.

Big Hugs to you and your hubby,
Janey Willis
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#3 Sheryl

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Posted 09 August 2008 - 09:50 AM

Welcome Vic and Vic's wife. Raynaud's can precede Scleroderma by many years. Many of us have issues with Carpal Tunnel and had surgeries on one or both hands. Prickly face can also be from different types of neuralgias. You will learn so much from this great group of people. Scleroderma is a progressive disease. It can progress slowly or come on hard and furious. Diffuse is faster at onset. Limited can take its time and can spend a lot of time internally. Many of us were diagnosed in our 50's. Most doctors just take care of each issue as it develops. The most important thing is to find a Rhumatologist who specializes in Scleroderma. I am not sure how insurance policies work. If you had a preexisting policy and had it for several years then it doesn't seem like you could be cancelled by just getting this diagnosis. But insurance companies are in the business to make a living. So, I guess they could/will cut any one out that isn't healthy. Ask whatever questions you need some answers to. We will do our best to give you an informed opinion or tell you something about how Scleroderma is affecting us.
Strength and Warmth,
Sheryl

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#4 truman

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Posted 09 August 2008 - 09:55 AM

Hi Vic:

Sheryl has said everything I would have said to you. The most important point is that if you had the pre-existing insurance policy, I don't see how they could even consider canceling you unless they want to give you all your premium money back from past years.

Let us know how you make out.
Tru

It is what it is...........

#5 Snowbird

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Posted 09 August 2008 - 04:19 PM

Welcome Vic and Vic's wife

I'm with the others. I don't see how they can cut you off of life insurance either but maybe they can and perhaps I'm way off base too?? I didn't realize your life insurance policies needed renewing...is that how they work in the USA? My thoughts are the same as the others.....for example, if you've been paying for 30 years, then you have done so and one would think that would be a binding contract no matter what happens later because no one would have any way of knowing when they were going to get sick nor would anyone ever have any way of knowing when/how they would die for that matter....so how could a life insurance company cut anyone off just because they got sick and get away with that legally?? If it were me, I'de be really looking into that one too, good for you! I could be wrong also, but it's my understanding that once you have been diagnosed with certain illnesses like Scleroderma/Crest, etc, it will affect you when trying to buy any new insurance...as in they will turn you down flat....like Sheryl said, they are in business only to make money.

From what I've learned, I hope this can help to answer your question about Limited Scleroderma somewhat? Scleroderma seems to strike mostly between 30-60 years of age from articles I have read (some also said 30-50 years). Of course, sometimes you can be younger as well because there are no hard and fast guidelines as to when someone might get sick. I also understood that this disease can take between 10-20 years before it manifests (reveals) itself. Some types of Scleroderma are systemic which is how they can affect people both internally and externally (like the lungs internally and the hands externally/raynauds). For example, I think morphea scleroderma only affects the skin externally (not any internal organs). Read up on the types on this site (I suggest you do not read everything everywhere on the internet, did that, too scary, definitely not a good thing to do!)....this site is factual, stick with it for your information!

A diagnosis of this disease is very difficult to absorb, to say the least. That's likely why your husband says he just wants to forget about it as you said. He probably just needs time to sort things out in his own way, some people need more time than others to do that. It's so good that you are looking into his illness. It will give you a good insight and I'm sure you will be of great support to him when he's ready to talk to you more about it (because you will understand it too).

I'm also curious to know what the bloodwork revealed? Does he have any other symptoms of scleroderma? I agree with Janey too, she has a good point, do you know if the rheumatologist can strongly justify this diagnosis for sure?

Keep posting and ask all the questions you need to. You will find that there are a lot of supportive and knowledgeable people on this site and there is always someone that can help.

Take care.
Sending good wishes your way!

#6 Sweet

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Posted 10 August 2008 - 11:05 AM

Hello! Welcome to the sclero forums. I'm so glad you've joined us. You will find a wealth of information, support and good ole friendship here. I'm really sorry to hear your husband was just diagnosed with limited sclero. I see that you've received some excellent information thus far, so for now I will just say welcome!
Warm and gentle hugs,

Pamela
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#7 Peggy

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Posted 10 August 2008 - 01:08 PM

Sorry to hear about your husband's diagnosis. You have come to the right place for information and for kind and caring people to lend advice and good wishes. There are so many on here with a wealth of background that someone usually knows what you are dealing with and can give advice.

With regards to the insurance issue................when a person takes out a policy they sign up for a 5, 10, 15, 20 year level -which means the pollicy is in force for that many years. Then at the end of that time period usually most policies give you the right to convert the policy to another policy WITHOUT having to prove medical eligibility again. So check our your policy before you let it expire or cancel.

Good luck to you and warm hugs,

Peggy

#8 Nina

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Posted 10 August 2008 - 03:48 PM

Welcome Vic ~ and please tell your husband "welcome" as well. I'm sure you will find that this forum is full of the most current information that could be possible. You have certainly come to the right place.
The insurance issue sound a little strange to me as well. I would ask more questions and speak with someone about a "refund." This just doesn't sound right ~
Read up on as much as possible, and tell your husband to join in when he is ready.
Much love,
Nina (DE)

#9 Sam

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Posted 11 August 2008 - 09:07 AM

Welcome!!!! Everyone had basically said what I would say to you. Sam
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#10 CraigR

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Posted 14 August 2008 - 10:22 AM

Since there is obviously a question regarding diagnosis, you probably need to get into greater detail regarding the blood and lung work information, if you haven't already.

As others have mentioned, it is possible to have Raynaud's without sclero. However, a major issue about the diagnosis is whether or not the rheumatologist found specific auto-antibodies in the test work. These are the specific antibodies that are attacking the body. They are different for different conditions, and the tests can show different at different times (?).

So, if the testing shows antibodies for sclero, lupus, Sjogren's or whatever (especially when repeated after a period of time), there is a higher likelihood. If there are none of these antibodies, the likelihood is greatly reduced. None of this is necessarily absolute - there many different ways that people test. These are some very strange diseases, and lab work can be far from perfect.

The test for telangiectasia seems somewhat suspect. For most of us, these are obvious red dots, especially on the face.

Lung can't be too bad if he plays racquetball for hours. But you would also benefit from a complete pulmonary function test, and get the results so you can check them out yourself. Be sure that they do a "diffusion" test.

My father had Raynaud's probably starting in his late twenties - when I was a child, we were told that he just had cold hands because he smoked. It wasn't until his fifties that he had onset of kidney and lung problems.

I first had Raynauds at 22 - 31 years ago. Other symptoms came a little bit earlier, but haven't gotten worse (now 53). As others have mentioned, the progression of the disease varies widely. It's almost as if each patient has his/her own version.

I am not a doctor.

Good luck,

Craig