Romy Braunstein
Forum Replies Created
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YEA! Gimme some!
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Cookie Heaven. Thanks for sharing.
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Love it!! Thanks tons!!
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The good news is that you got a diagnosis. Depression is a huge challenge in the rare disease world. I continue to take the high road, because I have no choice. I do struggle with my Dermatomyositis symptoms as my skin burns and itches all day and all night. I do get some symptom relief here and there, but its not a solution. I was approved for a clinical trial for my DM and I was just told they are not going to get me on the expanded access, due to another trial that was unsuccessful. I am going to continue to work on getting on the expanded access and not take NO as an answer.
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Invisible symptoms, people brush symptoms off, LEMS is grossly undiagnosed
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HI Ashley,
If anyone has ANY issues with getting IVIG or any financial aid….you can give out Sharon’s name from BioTek reMEdys Patient Service Director, she can help patients get IVIG infusion in the comfort of their own home and all insurance needs 877-246-9104 ex: 4061. I have noticed on some rare disease sites that patients are canceling their infusions due to the FEAR of going into an infusion center. Have no fear! Sharon is here!! Hope this helps some patients. BioTek reMedys is national and I know them personally. You can direct message me if you have any additional questions. Sharing is caring!! Romy
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You are rocking the mask, I must say! I need a bandana.
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I wear a mask inside anywhere, that is not my house. It is so hard to breath and it is very uncomfortable. So with that being said….I don’t go out much!
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Smores!!
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I found several since 2001. But, I found the LEMS clinical trial on google in 2011. Google did not exist when I was first diagnosed. I was diagnosed in 2001, but the local neurologist in my home town was not interested in treating a LEMS patient.
The Doctor in Phoenix at St. Joseph’s Hospital Barrows Brain Institute put me on a clinical trial as their only patient.
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Hi Ashley,
I had to have heart ablation surgery and after I was on the blood thinner for a few weeks I got the worst skin reaction that I had to cut the blood thinner out two weeks early.Since then, I was diagnosed with Amyopathic Dermatomyositis (very rare skin autoimmune disease). I am current on a very strong immune suppressant, Cellcept, to keep my skin from breaking out in a full rash. I do NOT have 100% symptom relief from the medication, but have improved a lot over the past two years.
And I am still on a prednisone, but just 5mgs a day…for the next 60 days that I will be off. The prednisone happens when I travel. I last traveled in January, but still am tapering down from 20 mg to 5mg to off and hopefully now flair up.
Also, from what I understand, if you have one rare disease, you can get more!!! Do it does not surprise me that you have a few things going on and I hope you are handing your symptoms.
All the best!
Romy -
Be careful!! I have heard both positive and negative reactions to the infusion. However, the one common thing they had in common is that they all had their symptoms simmer down.
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Hi Price,
I really hope you did not get the virus!! Please say well and safe!! -
Thanks for sharing!!
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I sound like William Hung! LOL
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My house is looking pretty good right now! Thanks for sending the guidelines!
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Don’t put your work before your health!!!
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Good Luck Chase!! Quality of life matters!!
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Philadelphia!
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That nobody knows from my outside appearance
that I am disabled!! -
How many people are living their life in SILENT pain with a rare autoimmune disease? And how many rare disease patients can walk without assistance? With my 6’2 frame, I tend to get unsolicited stares from strangers. Usually, eyes get transfixed from my shoes and slowly move up. I coined this phrase “elevator eyes.”
From the outside i look normal, my pain is invisible. Just because I don’t use a walker or wheelchair anymore does not mean I don’t have my share of internal pain and discrimination. If I am having a bad day, due to high humidity. I tend to stager a bit.
and concerned citizens have called the police on me for “staggering” to my car.
if I was on a walker or wheelchair, would the same concerned Citizens call the police?
ar
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Slurred speech, too
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muscle weakness, fatigue and unexpected falls!
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No. but I appreciate the information!