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#1 ozzy69

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Posted 21 September 2008 - 02:59 AM

Hi,
I was just diagnosed with Sclero last Wednesday. My rheumatologist thinks diffuse scleroderma,
But said it might be limited. I have an appointment for gastro doctor next week.
I had test done for lungs, barium swallow, echo, ct scan. Most of them look good, except for reflux, trouble swallowing pill, and lung was a little off. My symptoms are:
High Ana with titer .
Skin thicken on hands , face , feet.
Severe raynauds.
Swallowing problems.
Numbness of arms, mostly at night.
Losing hair.
Joint pain & bone pain.
IC of the bladder.
IBS
I have a few questions.
What is good for your skin on your face? I have always used face creams. Is there
things I should not use?
What is good for hair loss? It just seems to be thinning all over. A little more at
the top of my head. Should I try Rogaine for women.
For the last two years I have had pain in the area of my kidneys. It will be on
One side or the other, never both sides at the same time. It feels like a dull ache,
Sometimes or sharp pain like a fist is tighten up in that area. I have been to doctors in the past that just said it was from my Fibro, but my rheumatologist now believes I never had fibro. Has anyone else had this problem? I went to a kidney doctor a year ago, because my ana was negative he just said it was fibro.

Thanks for any ideas.
Nina Lynn

#2 Peggy

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Posted 21 September 2008 - 06:52 AM

Sorry to hear of your diagnosis. It sounds like your appointment was a thorough one which is great. Your symptoms seem to mirror mine. My sclero is the systemic and I also have 5 other autoimmune diseases with it. I would make sure to mention your kidney pain to your doctor as sclero can affect the kidneys. From what I've heard we are to watch our blood pressure on a monthly basis as renal failure can occur quickly with us. As far as the thin hair, I don't know about the Rogaine. My hair got really think and almost looked like I was going to go bald. This was when I was on the cyclophosphamide. Now that I'm on cellcept it has come back to the way it was. Hopefully that will happen with you too. I too also have the pain in my legs and hips. How has your fatigue been? That is the thing that is really bad with me and it doesn't seem to get better. You just get used to taking lots of naps. Please keep us posted on how you are doing. You may find out at your next appointment you may want to take another set of ears with you. They throw a lot of information at you and it's hard to remember everything. I also write any questions I have down before hand so I remember to ask all of them.

Warm hugs,

Peggy



#3 Amanda Thorpe

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Posted 21 September 2008 - 10:06 AM

Hello Nina Lynn

I am sorry your diagnosis is now definatley scleroderma but at least you now know what you are dealing with.

As Peggy said you had a thorough working up which is always a good thing.

I don't know about the hair loss as I never had that symptom. I can relate to the numbness at night although I get it in the hands and feet, most annoying as it's already hard enough to sleep in anything near comfort.

Sorry I don't have any suggestions because that's what you have actually asked for! :unsure:

Keep us informed and take care.

Amanda
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#4 smac0719

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Posted 21 September 2008 - 11:50 AM

Hello Ozzy69,

I had skin tightening on my face and still have it on my arms, legs and feet. I think the methotrexate improved the tightening on my face. I would just stay away from face creams with collagen. I have tried everything under the sun for my arms and legs including a couple of prescription lotions. I have found that the vasoline cocoa butter vitalizing gel body oil and the cocoa butter smoothing body butter helps me keep moisture in my arms and legs.
I may have Scleroderma, but Scleroderma doesn't have me!

#5 ozzy69

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Posted 21 September 2008 - 12:41 PM

Thanks for everyones reply,

Peggy,

My feet only get numb when I have been sitting too long. My arms drive me crazy at night. I can so much relate. I have to keep switching positions to get them better. It really disrupts my sleep. I also have hot to cold symotons all night. I never seem to have high blood pressure. It is low most of the time. I am hoping the gastro doctor can shed so light on my pain on my sides. I too have pain in my legs and hips. I was told two years ago that I had bursitis if the left hip. I went through physical therapy for it. It has gotten better but never went away. I also have terrible fatigue. I have had it for years. I take 5mg to 10mg of Dextroamephetamine for my bladder and that also helps my fatigue. My rheumatologist does not like that because of the raynauds but before I was on it I had to take 12 pills a day for my bladder. Thanks for the tips.

Amanda,

We do have the same problems with the arms. Did anyone ever give you reason for it? I know before you stated you have IC, did you ever get any pain in your kidney area? My uro thinks the Kidney pain is referred pain from my bladder. All these theories form doctors were when they only thought I had IC & Fibro, not Sclero.


smac0719,

Thanks for the tips. I did buy some body butter yesterday, and seems to be working good.


Again everyone, thanks for your replies. I have been reading so much that it seems so much to take

in. I really like hearing how other cope.

#6 Amanda Thorpe

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Posted 22 September 2008 - 12:30 PM

Hello Nina Lynn,

I never had kidney pain with the interstitial cystitis (IC) and it being a breech in the GAG lining of the bladder as opposed to an infection like standard cystitis I don't know how it could effect the kidneys. Your kidney pain was attributed to this initially but with systemic sclerosis (SSc) now in the mix it's worth making sure this was a correct diagnosis as SSc can effect the kidneys.

With the arm problem I have not spoken to the rheumatologist about it yet as it has come up in between appointments, I see him again end of November and will discuss it then if it is still an issue. If he comes up with anything specific I'll be sure to pass it on.

Take care.

Amanda
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#7 debonair susie

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Posted 25 September 2008 - 07:10 AM

ozzy69,

I am so sorry you are going through all of this...it can't be easy for you.

However, you are a trooper and have come to the right place in an attempt to get an idea of what you are dealing with.

In regard to the hair loss: How long have you been experiencing this?

I lost 2/3 of my hair over a period of a year. But, then...it started filling back in. I never actually knew what actually caused my hair loss.
I DO have Psoriasis/Psoriatic Arthritis, so I was using Methotrexate...for 13 years...to control it. I couldn't correlate, in regard to time...what may have happened.

Yet, prior to being diagnosed with Scleroderma (BTW, by a gastro), was when I had the hair loss. I'm thinking that I was in a major flare and the Sclero and Psoriasis were in battle!

I wonder if your kdney issues might be part of the cause of your hair loss?

Please, let us know how the appointment with the gastro goes?
I'm thinking it will be a very informative time...for you.

Hugs,
Susie
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#8 canon

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Posted 25 September 2008 - 03:44 PM

Hi Nina Lynn,

So sorry you have been diagnosed with scleroderma. Is your rheumatologist a specialist or do you live in one of those areas where it is a long drive to see one?

The time I had flank pain with + protein in my urine the rheumatologist sent me to a nephrologist. He told me I was having a lupus flare and to always check my BP; that was when they told me I had lupus and now it is scleroderma. All of those initial symptoms before a concrete diagnosis was made responded well to plaquenil and methotrexate for me especially the skin issues, well the joint pain too. The methotrexate dose is continually going up as other things happen. I use lubriderm for sensitive skin without any fragrance, everywhere. Oil of olay butter soap works well. It has been plaquenil and methotrexate no matter what the diagnosis has been. If it works no need to change. They have added other medications but not usually for long term use.

Take care and hope you start feeling better soon.

Judy
A happy heart is good medicine.

#9 razz

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Posted 25 September 2008 - 07:25 PM

Hi Nina Lynn,

Sorry to hear you've been diagnosed with scleroderma. Early on my hair got dry, brittle and thinner. Even my eyebrows seemed to fall off. My most recent rheumatologist said it was okay to use Woman's Rogaine. He said I could even rub some rogaine on the eyebrow area. I didn't try it and instead pencil in eyebrows. This year my hair has improved some and I'm noticing it more now especially since I'm taking Cellcept and, after reading the comments here, realized it wasn't the shampoo that made my hair look thicker and shinier. I would give the rogaine a try.

I have tried all kinds of creams and right now I like one particular body lotion, it's not too greasy. I have another face lotion. It's also not greasy, affordable and a good quality cream. There are many on the market to choose from and a selection is really a personal matter.

I hope you are doing well. Do keep us posted.


Hugs,
Razz
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#10 ozzy69

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Posted 26 September 2008 - 07:48 AM

Hi,

Thanks so much for your post.

Susie,

I have been losing hair for about 4 months now. Had my appointment with the gastro today. We just went over information from the past and she ordered more blood work and stress test for right now. Then she wants to do a upper scope. She confused me some. We were talking about my chest pains and she said that you don't feel esp. spasms which is not what I have heard from different people. She will email my results and I go back to my rheumatologist on nov. 13th to see how we are going to treat the sclero. I left without any answers and feeling blah. I mention the IBS and kindney pain and she stated all of it may have nothing to do with the sclero. :blink:

Razz,

Thanks for the information. I have to pencil my eyebrows in too. I envy people with nice full eyebrows :lol: My hair has always been thick until the last 4 months. Maybe the women rogaine will help.

Judy,
Thanks for the information. I have had protein in my urine off & on for about two years. When I went to the nephrologist he said it was do to my IC of the bladder and fibro. I guess that will be the next doctor I need to go back to.

Thanks so much,
Hugs,
Nina Lynn

#11 canon

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Posted 27 September 2008 - 06:24 PM

Hi Nina,

The comments from your Gastro send up a few red flags. If it were me and as much as I hate change, those comments would make me look for another gastro. Good gastroenterologists are hard to find too. Confusion is not an option with this disease. There are a couple types of esophageal spasms, one is called diffuse esophageal spasm and the other is called the nutcracker. One causes severe chest pain and the other causes chest pain too but to a lesser degree. Anyway I got worried about you after reading what she told you.

Keep looking for the correct answers and take care of yourself. Look everything up to see if it makes sense and current.

Judy
A happy heart is good medicine.

#12 debonair susie

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Posted 28 September 2008 - 02:15 PM

Hi Nina Lynn,

I'm in agreement with Judy. I'm really sorry your gastro appoinmtent didn't go as you had hoped.

AS far as the esophageal spasms are concerned...it's obvious she hasn't experienced them :o

It really makes me wonder how much she actually knows about Scleroderma. Maybe she has "other ideas" about what may be going on with you, but she should not have left you hanging.

As folks with these sorts of problems, we need more specific answers...if a dr cannot answer our questions, then they should admit they don't know and make a referral to another dr.

Keep you rchin up...you'll get answers if you pursevere!

Special Hugs,
Susie
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#13 Member

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Posted 11 October 2008 - 02:44 AM

Hi, Nina! I agree with the others. If your GI thinks esophageal spasms are painless, you may want to consider 2 things: try someone else, or try to educate your doctor. I have found that my doctors like it when I come in with "new knowledge" from reading reputable journals (fortunately I am in an allied health field and have access to a teaching hospital with a great library) and, having discovered this website this week, I will take info from this as well. I go in with the attitude of, "I read this and it makes me want to ask these questions" or "What do you think about this?" or "I read this. Does this apply in my case?" and they are always willing to have a discussion. Finding a doctor who understands SSc can be difficult. I educate my family and friends about it, so why not help educate the doctors too!

I also kept a journal of my esophageal spasms (what time it started/what time it resolved/pain level (on their beloved 1-10 scale!)/what I was doing when it started/how long after last eating it occurred. Doctors like data! My GI is a great listener. He gave me nitroglycerine (sublingual) that I keep with me at all times. It's a very tiny pill, and the bottle is very small (you can keep it in a wallet) so I can use it discretely. In addition, I take Imdur (generic: Isosorb) every morning (my Internist came up with that idea; she is also a great listener and, since we have the same tastes in reading material, we always discuss the latest books we have read) and it has reduced my frequency of spasms from 8-9 wk to 1-2/wk. You may want to ask your doctor(s) if that would be something worth exploring in your case.

I hope the spasms lighten up -- I have found dealing with them (before getting the meds) can be difficult and scary since they mimic the symptoms of a heart attack.

Soaring Eagle