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Tagged: scleroderma, AP
- This topic has 7 replies, 5 voices, and was last updated 6 years, 4 months ago by medic1025.
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July 22, 2018 at 11:44 pm #462553medic1025Participant
Hello. My wife is currently seeing doctors in order to determine if she has scleroderma but several things point in that direction so we are trying to get ahead of things.
She has a negative ANA but got Raynaud’s at 45 and has painful, swollen fingers and painful knees and elbows. Her fingers also stayed extremely swollen for almost 3 months. She also had a bout of almost non-stop itching all over her body for 3 months about 6 months ago and all the hair fell off her arms. The skin on her hands seems thinner and her forearms seem slightly tighter. Her PFT, chest CT (not HRCT..
Doctor didn’t know), EKG, etc were all normal. Her swallow test showed mild slowing but nothing highly concerning I guess.I was hoping someone with experience would be willing to message me with information on Dr. F in California and/or Dr. C in Mississippi. I am trying to find out how much the initial consult was and your thoughts on your visit.
I’m not sure either of these docs will see us without a diagnosis but sitting around and waiting for things to get worse doesn’t seem like a good plan.
Thanks!!
July 23, 2018 at 3:19 pm #462559whaleharborKeymasterI have not seen either doctor personally, but you can request their contact info by following the instructions at the link below. From there, you can call their offices to get more information and answers to your questions.
https://www.roadback.org/resources/doctor-search/
Of course, other patients on here may have personal feedback to give you as well. I just wanted to make sure you knew how to get their info in case you didn’t have it.
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
July 23, 2018 at 3:58 pm #462562medic1025ParticipantThank you so much for your reply. I have their contact info but their offices are unable to give me a cost until they see her and both are a long way without an idea of how much each will charge for a complete work up. I would also really like to have some feedback on experiences at either doctor.
Thanks again in for your reply.
July 23, 2018 at 4:55 pm #462564MazKeymasterIt tends to be a little quieter on the forum, during summer and holiday periods, Medic, but if you don’t get any responses in the next few days, let me know and I’ll put you in touch with one of the foundation directors, who has been to see Dr. F. for a family member who had scleroderma but is now in sustained remission from AP!
July 23, 2018 at 6:20 pm #462565medic1025ParticipantMaz..thank you so much!!
July 24, 2018 at 1:11 am #462566PeachyParticipantHi Medic, we have been going to Dr. F in California and he is awesome
And knowledgeable AP doctor.July 24, 2018 at 8:28 am #462569richieParticipantIt shouldnt be much of a decision –as long as you are willing to travel –Dr. F should be a strong consideration —-Call his office for cost etc –Maz would give you the info
July 24, 2018 at 8:48 am #462570medic1025ParticipantThanks Peachy! I sent you a pm.
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