Scleroderma, Limited

Posted by dycota13 @dycota13, Aug 18, 2019

I have Morton’s neuromas bilateral feet. I had them removed seven years ago but they are back. Since their first removal, I was diagnosed with scleroderma. I’m wondering if this diagnosis will affect the recovery process as last time, it was horrible. I have severe Raynauds only at this point in my disease.

Hello @dycota13, Welcome to Connect. There is a video Q & A by Dr. Leroy Griffing that talks about scleroderma that you may be interested in watching and reading through the questions and answers. Here is the direct link — https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

Did you get a chance to discuss your concerns with your doctor? I'm wondering if they are able to share some suggestions for helping the recovery process.

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Hi. I have seen this video but thank you. I was dx at mayo and now am starting with new scleroderma team at UCSF. I will be asking about my neuromas then. This disease sucks.

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@dycota13 There are a few other discussion where you can find other members discussing similar treatments. You might want to post questions to see if someone can share their experience or helpful information.

> Groups > Autoimmune Diseases > Raynaud's Syndrome
https://connect.mayoclinic.org/discussion/raynauds-syndrome/
> Groups > Autoimmune Diseases> Scleroderma and Raynauds
https://connect.mayoclinic.org/discussion/scleroderma-and-raynauds/
> Groups > Bones, Joints & Muscles > Morton's Neuroma
https://connect.mayoclinic.org/discussion/mortons-neuroma-209f16/

Another seach tool I use that can be helpful for finding medical research types of information is Google Scholar — https://scholar.google.com/. It allows you to sort the links by year so that you can find the latest information easier.

Hope you find some answers and can give us an update after you meet with your new scleroderma team at UCSF.

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hi I have scleroderma and have had symptoms for 12 years. I was officially diagnosed one year ago. My mouth has gotten considerably smaller but not physically noticeable yet from outsiders. I am very anxious about this & wonder if this will get worse with time? I also have raynaud's disease, chronic fatigue, Scleroderma esophagus, dry eyes, dry mouth, depression, anxiety, etc. Any info about the mouth issue or anything else related to Scleroderma is greatly appreciated.

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Just wondering if you have tried physical therapy for the neuromas. I had a flare up last year.. turns out a new small neuroma. I did physical therapy and things are much better. Still pain, but bearable and I can walk or stand for 30-40 minutes. My therapist used needles similar to acupuncture with a tens machine and a few other things… but the needles with the tens machine helped the most. You may have to ask around as to who does physical therapy on feet. First person I got knew very little, but knew someone who knew a lot about it. Acupuncture might be an option for you. We do not have one in my town.., well there is one for dogs, but that doesn't help me. I will take this over having surgery again. It was a six month recovery for me in 2012.

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@modelmiche

hi I have scleroderma and have had symptoms for 12 years. I was officially diagnosed one year ago. My mouth has gotten considerably smaller but not physically noticeable yet from outsiders. I am very anxious about this & wonder if this will get worse with time? I also have raynaud's disease, chronic fatigue, Scleroderma esophagus, dry eyes, dry mouth, depression, anxiety, etc. Any info about the mouth issue or anything else related to Scleroderma is greatly appreciated.

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Hello, you could always try mouth exercises /stretching. It helps a little. Facial massages are also a good tool. Borage oil helps the skin. Gotu kola is also one of my essentials. You could take them orally or topically. I've had scleroderma since I was about 12. Keep your esophagus protected. I wish I would've taken medicine sooner for my reflux. My lungs are terribly damaged now. I feel I could've prevented this if I would've known what I know now. Try to stay positive and exercise. Diet and exercise are so important. May I ask how old you are?

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@modelmiche

hi I have scleroderma and have had symptoms for 12 years. I was officially diagnosed one year ago. My mouth has gotten considerably smaller but not physically noticeable yet from outsiders. I am very anxious about this & wonder if this will get worse with time? I also have raynaud's disease, chronic fatigue, Scleroderma esophagus, dry eyes, dry mouth, depression, anxiety, etc. Any info about the mouth issue or anything else related to Scleroderma is greatly appreciated.

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One more thing,,, i feel the change won't get worse with your mouth. Do the exercises,,and believe me no one notices change but you!! We are our worst critics! Xo

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@fracturedd

One more thing,,, i feel the change won't get worse with your mouth. Do the exercises,,and believe me no one notices change but you!! We are our worst critics! Xo

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Thank you so much for that, we are definitely our worst critics:)

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@fracturedd

Hello, you could always try mouth exercises /stretching. It helps a little. Facial massages are also a good tool. Borage oil helps the skin. Gotu kola is also one of my essentials. You could take them orally or topically. I've had scleroderma since I was about 12. Keep your esophagus protected. I wish I would've taken medicine sooner for my reflux. My lungs are terribly damaged now. I feel I could've prevented this if I would've known what I know now. Try to stay positive and exercise. Diet and exercise are so important. May I ask how old you are?

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I take dexilant for esophageal dysmobility & it helps immensely with my gerd. What kind of foods specifically do you recommend?

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Hello, I also have Scloderma & Raynoids, & T1D for 49years, hypothyroid, RA, esophagitis, gastroparesis, and digestive problems. The Raynaud’s started around 1998-1999, with a sore one my index finger that took over 6 months to heal. By 2007 I was diagnosed with HERS 2 breast Cancer , after a year of Chemo, Herceptin, I was cancer Free 👍 in December of 2019 I was hospitalized at first I was admitted for a low hemoglobin 6.8, my Right are was very swollen and Hard . All the doctors were very confused about it , called an infectious Disease doctor. Well I was then told I had cellulitis . After weeks of receiving IV treatments of antibiotics & myself researching , I came up with: it was Scloderma, at the next visit w/ the infectious Disease doctor I had asked “ could this be Scloderma? The Doctor then asked how long have u had this ? Since before 2008 . He the discharged me from his care & sent me to a rheumatologist, this doctor then set me up with an appointment w/ the Scleroderma Foundation @ Northwestern Hospital in Chicago. My Arm is still very tight $ a bit swollen. I can no longer straighten it ! I very hopefully I’ll get answers tomorrow 🤞🏻🤞🏻👍

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@sickirishlass

Hello, I also have Scloderma & Raynoids, & T1D for 49years, hypothyroid, RA, esophagitis, gastroparesis, and digestive problems. The Raynaud’s started around 1998-1999, with a sore one my index finger that took over 6 months to heal. By 2007 I was diagnosed with HERS 2 breast Cancer , after a year of Chemo, Herceptin, I was cancer Free 👍 in December of 2019 I was hospitalized at first I was admitted for a low hemoglobin 6.8, my Right are was very swollen and Hard . All the doctors were very confused about it , called an infectious Disease doctor. Well I was then told I had cellulitis . After weeks of receiving IV treatments of antibiotics & myself researching , I came up with: it was Scloderma, at the next visit w/ the infectious Disease doctor I had asked “ could this be Scloderma? The Doctor then asked how long have u had this ? Since before 2008 . He the discharged me from his care & sent me to a rheumatologist, this doctor then set me up with an appointment w/ the Scleroderma Foundation @ Northwestern Hospital in Chicago. My Arm is still very tight $ a bit swollen. I can no longer straighten it ! I very hopefully I’ll get answers tomorrow 🤞🏻🤞🏻👍

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@sickirishlass, I, too, hope you get answers. Please post an update.

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@modelmiche

hi I have scleroderma and have had symptoms for 12 years. I was officially diagnosed one year ago. My mouth has gotten considerably smaller but not physically noticeable yet from outsiders. I am very anxious about this & wonder if this will get worse with time? I also have raynaud's disease, chronic fatigue, Scleroderma esophagus, dry eyes, dry mouth, depression, anxiety, etc. Any info about the mouth issue or anything else related to Scleroderma is greatly appreciated.

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Look into TMJ issues if you are unable to open your mouth wide…

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@johnbishop

@dycota13 There are a few other discussion where you can find other members discussing similar treatments. You might want to post questions to see if someone can share their experience or helpful information.

> Groups > Autoimmune Diseases > Raynaud's Syndrome
https://connect.mayoclinic.org/discussion/raynauds-syndrome/
> Groups > Autoimmune Diseases> Scleroderma and Raynauds
https://connect.mayoclinic.org/discussion/scleroderma-and-raynauds/
> Groups > Bones, Joints & Muscles > Morton's Neuroma
https://connect.mayoclinic.org/discussion/mortons-neuroma-209f16/

Another seach tool I use that can be helpful for finding medical research types of information is Google Scholar — https://scholar.google.com/. It allows you to sort the links by year so that you can find the latest information easier.

Hope you find some answers and can give us an update after you meet with your new scleroderma team at UCSF.

Jump to this post

Ty, John for all the Groups listed, I’m very anxious, to read them all, I too have Raynaud’s & Scleraderma plus Barrett’s esophagitis, T1D(49yrs) Hypothyroidism, RA, severe anemia, Post HERS2 Breast Cancer W/Chemo & radiation & 2 sarcoma removed All right breast.
I’ve had phone call visits from Northwestern/ Scloderma Clinc (Chicago) I finally get to see one of these Doctors on July 28th, in the mean time they started me on Mycophenolate Mofetil , have you heard of this being used on Scleraderma patients ?

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@sickirishlass

Ty, John for all the Groups listed, I’m very anxious, to read them all, I too have Raynaud’s & Scleraderma plus Barrett’s esophagitis, T1D(49yrs) Hypothyroidism, RA, severe anemia, Post HERS2 Breast Cancer W/Chemo & radiation & 2 sarcoma removed All right breast.
I’ve had phone call visits from Northwestern/ Scloderma Clinc (Chicago) I finally get to see one of these Doctors on July 28th, in the mean time they started me on Mycophenolate Mofetil , have you heard of this being used on Scleraderma patients ?

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Hello @sickirishlass, That's great news that you get to see the doctor July 28th. I am not familiar with CellCept (or mycophenolate mofetil) but found an article that discusses the use for Scleroderma patients.

How Can CellCept Help Scleroderma Patients?: https://sclerodermanews.com/2017/06/14/what-is-cellcept-and-how-could-it-help-scleroderma-patients/

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@sickirishlass

Ty, John for all the Groups listed, I’m very anxious, to read them all, I too have Raynaud’s & Scleraderma plus Barrett’s esophagitis, T1D(49yrs) Hypothyroidism, RA, severe anemia, Post HERS2 Breast Cancer W/Chemo & radiation & 2 sarcoma removed All right breast.
I’ve had phone call visits from Northwestern/ Scloderma Clinc (Chicago) I finally get to see one of these Doctors on July 28th, in the mean time they started me on Mycophenolate Mofetil , have you heard of this being used on Scleraderma patients ?

Jump to this post

Hi, @sickirishlass . I was put on CellCept several years ago. It was supposed to act like prednisone without the bad side effects . I slowly tapered off the prednisone and then had a big crash because CellCept wasn’t doing it’s job. Now I’m getting rituxan infusions and it’s doing a great job. I know that CellCept works for some autoimmune diseases and I just hope that yours is one of them

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