Making an appointment with Mayo for Lupus.

Posted by dorrielee @dorrielee, Sep 17, 2020

Does anyone know how I go about making a appointment with someone for my lupus. I’m not having much luck in mason city I’m with only 1 specialist here. Do I need a referral?

If you go to a Mayo site about an illness or other condition you will see a box saying Make an Appointment or something close to that. Click that and you should be on your way. Give it a try.

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@dorrielee — Here's the Mayo Clinic – Lupus page. You can click the Request an Appointment button on the page or you can call Mayo Clinic. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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Hi @dorrielee, you may also be interested in reviewing the discussions in the Group called Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

In particular, see this discussion that @sadie168 started
– So many questions. Seeing Rheumatology and GI at Mayo JAX https://connect.mayoclinic.org/discussion/so-many-questions/

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Hello I’m 25 I’m from Houston. I was diagnosed three years ago with lupus and since then it’s been a down hill battle I’ve fought. I’ve tried what feels like so many medications and nothing has worked. Currently on the iv infusion of benlysta every three weeks and at first it worked. But now my numbers for labs are worse than before and I just feel terrible 24/7 I’m lost. I’m looking into becoming a patient with the Mayo Clinic. I travel with no issues because my parents work for the airlines which is a blessing. I’m just wanting to see if this is something they can help me figure out since my current doctor isn’t. How long would I need to plan to stay? Would they do everything they needed to while I was there? Meaning tests scans appointments etc. or would I have to be coming back every week like I do at my doctor here. I have a 4 year old son so it is alittle hard but willing to travel if it means getting answers I’ve longed for.

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@laurenavery22

Hello I’m 25 I’m from Houston. I was diagnosed three years ago with lupus and since then it’s been a down hill battle I’ve fought. I’ve tried what feels like so many medications and nothing has worked. Currently on the iv infusion of benlysta every three weeks and at first it worked. But now my numbers for labs are worse than before and I just feel terrible 24/7 I’m lost. I’m looking into becoming a patient with the Mayo Clinic. I travel with no issues because my parents work for the airlines which is a blessing. I’m just wanting to see if this is something they can help me figure out since my current doctor isn’t. How long would I need to plan to stay? Would they do everything they needed to while I was there? Meaning tests scans appointments etc. or would I have to be coming back every week like I do at my doctor here. I have a 4 year old son so it is alittle hard but willing to travel if it means getting answers I’ve longed for.

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Hi @laurenavery22 and welcome to Mayo Clinic Connect. So glad you could join the group. feeling terrible 24/7 sounds unbearable. You will see that I moved your comment to a conversation where members are discussing lupus and getting an appointment at Mayo. I did this so you could connect with them and share your experiences. Every person's medical care is individualized at Mayo and it really depends on the specialties that you need to see and the department's availability. I would recommend a doctor's referral as Rheumatology tends to have a waiting list.

May I ask what your physician has offered for relief of your symptoms?

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@laurenavery22

Hello I’m 25 I’m from Houston. I was diagnosed three years ago with lupus and since then it’s been a down hill battle I’ve fought. I’ve tried what feels like so many medications and nothing has worked. Currently on the iv infusion of benlysta every three weeks and at first it worked. But now my numbers for labs are worse than before and I just feel terrible 24/7 I’m lost. I’m looking into becoming a patient with the Mayo Clinic. I travel with no issues because my parents work for the airlines which is a blessing. I’m just wanting to see if this is something they can help me figure out since my current doctor isn’t. How long would I need to plan to stay? Would they do everything they needed to while I was there? Meaning tests scans appointments etc. or would I have to be coming back every week like I do at my doctor here. I have a 4 year old son so it is alittle hard but willing to travel if it means getting answers I’ve longed for.

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You are very wise to seek help with the best specialists you can find for Lupus. My sister went undiagnosed and misdiagnosed for a long time because she also has other autoimmune diseases whose symptoms overlay those of Lupus. When she finally was correctly diagnosed, she, nor I, really understood the seriousness of Lupus and how devastating it can be. This lack of knowledge caused her to reject treatment that was recommended, which was a course of chemotherapy, it just seemed too extreme to her. Because this treatment was not done, she nearly lost her life to Lupus and now has life-long disability caused by many strokes due to cerebral vasculitis. I understand that cerebral vasculitis is a rare occurrence in Lupus, more commonly it affects lungs and kidneys. She has since had the chemotherapy and her Lupus has stabilized. Please, when treatment is recommended, no matter how distasteful it seems, do your research so you understand the ramifications when making your decision. Best of luck.

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My lupus doctor here I only see every three months so I called him today to tell him about everything new going on. He sent me to get more labs drawn and for a specialist to go see. I got labs back today as well from last week that showed low vitamin d levels which I’ve never had before and all my bilirubin levels total, direct and indirect all being 2x higher than they should be and they have been that way for 3 months now. No one seems to be worried about it. I also had low platelet count. I was bawling this morning because I know something is wrong and it’s like no one can figure it out. I’m exhausted. Physically and mentally. I’m tired of the unknown answers and feeling like this. But it seems like no one else is worried except me. I know I’m not a doctor but I also know my body and know this isn’t normal to feel this bad.

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@laurenavery22. I am with you there… I feel like I am being poisoned through my body and something is not right; possibly obviously not easily detected OR something so simple it's being missed. Am even thinking of our tap water; a mix up in one of my medications (they can look so similar but be far different) … even my newish pillows .. my breathing in contaminants…sounds odd but I feel like you "has to be something". I even suspect my eyedrops etc.

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@laurenavery22

My lupus doctor here I only see every three months so I called him today to tell him about everything new going on. He sent me to get more labs drawn and for a specialist to go see. I got labs back today as well from last week that showed low vitamin d levels which I’ve never had before and all my bilirubin levels total, direct and indirect all being 2x higher than they should be and they have been that way for 3 months now. No one seems to be worried about it. I also had low platelet count. I was bawling this morning because I know something is wrong and it’s like no one can figure it out. I’m exhausted. Physically and mentally. I’m tired of the unknown answers and feeling like this. But it seems like no one else is worried except me. I know I’m not a doctor but I also know my body and know this isn’t normal to feel this bad.

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@laurenavery22, if you wish to pursue a second opinion at Mayo Clinic, here is the contact information to request an appointment at any of the 3 locations: AZ, FL or MN http://mayocl.in/1mtmR63

You are the expert in you. It is important to find doctors who include you as part of the team.

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