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Eosinophilic Fasciitis: Looking to connect with others

Autoimmune Diseases | Last Active: Aug 8, 2023 | Replies (34)
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@mmr65

Hi Roberta,
I am sorry to hear that you are going through the same misery as me.
I do have groove signs in my forearms, thighs. I am reluctant to go any more medications that may or may not help. I feel that I have improved quite a bit from 2 months ago where I couldn't even bend down to pick something up of the floor.
You are mentioning IVIG Infusion, I am not familiar with this.

Have your symptoms improved at all?
I am going for a CT scan tomorrow to see if the tightness in the abdominal area is in the wall or if there is something else going on.
Did you have a biopsy done?

Thank you for reaching out to me. I really appreciate it.
You are absolutely correct that it is a lonely journey.

Take care,
Maria

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Replies to "Hi Roberta, I am sorry to hear that you are going through the same misery as..."
duran24 | @duran24 | Jan 10, 2023

Hi Maria,

Yes, I had a biopsy to confirm EF. I also went to Mayo in August and based on the slides sent to them from the pathologist, they confirmed the diagnosis.

Since the onset of acute symptoms, yes, thankfully I have improved. My range of motion is better, balance has improved, I can grasp things easier, can walk up and down stairs and step off a curb easier, and have made most process in the trunk area. I have most issues in my legs, arms and with fatigue. Although, the fatigue isn't as intense as it use to be.

I hope everything with your CT turned out ok. Please reach out if you need anything.

Roberta

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