I think I have FSGS instead of MCD

So I went to see my nephrologist today and it did not go so well. After upping my cellcept an extra 500 mg, my protein levels did not move. I went in a few days before to do lab and my neph did not have anything filled out.

When I saw her today she said she thinks I have FSGS, but doesn't want to call me that. She asked me if we have checked my cholesterol in a while? I don't know I'm not the doctor. Then she was beating around the bush about remission/kids, etc. I asked her about another biopsy since these two diseases are often misdiagnosed. She did not think I needed that then basically told me I should come back in between 8-9 weeks. What???

I went and had a second opinion about a month ago and I really liked him. He was very matter of fact about things, which is what I need.

I guess my question is Am I going crazy thinking my original neph is not being proactive about my situation? Am I right to think I am not receiving good treatment? How many of you were misdiagnosed or had a second biopsy?

Thank you for your time and thoughts. I appreciate you all.

Vanessa

By kym1489
Posted May 6, 2008 at 1:33 am

Actually, the last time i saw my neph, about 1 week ago, he also told me that may be i am not MCD but FSGS, i ask him either i need to do again the biospy, i done twice 3 years ago, recently relapse, havent done any biospy yet, and he told me may be later on, he need to observe for another few month first. So now actually what i do now, is follow dr instruction, whatever medicine he gave me i just ate and wait for improvement, and i am not sure what actually i ahd with me, MCD or FSGS????

I also thinking of going for another neph to heard other opinion, but i know no matter where i go, first thing must be done is the biospy, then after that still the same medicine given or may be change a bit the dose...haha.so i just stick with the original neph, other neph, may be, one day i will go for it.

So actually is our own health, if you think that its time for you to change your dr, ask for others opinion, you should go for it, may be you will get a better one or may be you will get a worse one. I been go for a worst one before, almost cause my kidney kill cause of the medicine he gave, so i had some bad experience changging dr.

Bless you.

By jlinsanjose
Posted May 6, 2008 at 4:25 am

How much experience does your doctor have with diagnosing and treating patients with FSGS? From my 8 years of experience working with a nephrologist, a lot of communications during your appointments, by phone or by email helps tremendously with your treatment plan. The doctor should always be available to address your concerns and work with you on your therapy plans. If not, it's time to find a nephrologist with experience treating patients with nephrotic syndrome-MCD-FSGS.

US News publishes the top 50 hospitals in treating kidney diseases. It may be a good start...

By Riverdude
Posted May 6, 2008 at 8:07 am

Vanessa:

The medical service industry is no different than any other service industry. If you think your automechanic isn't doing a good job you find a different one.

You shouldn't have any reservations about finding a doctor that fits for you.

jlinsanjose is right on target in asking what experience your current Neph has with FSGS. Many Nephs have no experience or little experience with the disease.

You owe it to yourself and your family to get the best medical care. It is out there. You have to find. It may not be as convenient, but we are talking about your life. So make the effort.

Trust your instincts.

Good luck, Erich

By amelieMA
Posted May 6, 2008 at 5:50 pm

My gut feeling is to get a second opinion if you are not comfortable with your doctor. There is a reluctance to do more biopsies because you can get problems with those so don't ask for one if it is not indicated. With these diseases you need to be patient; it takes a lot of time to get better or at least go into remission it seems.

By hope4health
Posted May 6, 2008 at 10:47 pm

Trust your gut in terms of which doctor is a good fit for you.

I had a second biopsy confirming MCD. Everyone thought I had FSGS because I've been resistant to treatment (no response to prednisone or cyclosporine. I'm on cellcept now which might be working) and because my kidney function appeared to be rapidly deteriorating (My creatinine level tripled from 1.2 to 3.4 in a relatively short period.) Turns out I was going through steroid withdrawal symptoms. I guess I was in some kind of adrenal shock and my kidneys were reacting to that.) I'm back on prednisone and am slowly tapering again. My creatinine level is back down to 1.2

All the best,

By AmosB
Posted May 8, 2008 at 8:18 am

Trust how you are feeling with your doc. We actually moved our daughter from a children's hospital to a teaching hospital based on how the new nephrologist communicated. We had been in and out at the children's hospital for months with as short as 24 hours between admits when we went for a third opinion. It wasn't that we were hearing anything different in her treatment of her fsgs, it was that he was willing to work with us!! We have a great relationship with him and his staff because we all work together!!!!
One hard thing that we had to learn is that the doc's don't have the answers to any of our situations. We always felt like if you went to the doc with symptoms they would fix it.....
Good luck-
a

By Beemac
Posted May 9, 2008 at 10:25 pm

It is imperative that you trust your doctor and get a second, third, or how many opinions it takes for you to be comfortable. If you don't have communication with your neph and don't get aggressive about your own body, you'll lose out. I went to the Mayo Clinic for a second opinion and he confirmed what my neph diagnosed. I see my neph every 3 months unless something comes up. I have a notebook that I jot down all the questions I need to ask for the next visit. I also have a journal that I write down daily, what meds I'm on, if anything changed and how I generally feel. It is so helpful in learning about this disease. I write down all the answers and statements the neph tells me and I take my sister with me so, if I miss something, she'll remember. You have to stay up on your own disease. It's time consuming, but FSGS is a life-threatening disease.
Thanks.....

By smk
Posted May 10, 2008 at 7:44 pm

Here in Ontario, Canada, I am lucky to have a docor who is a nephr. intern at a local teaching hospital. She is right up there with the most recent developments, and sofar I feel I am in really good hands with my MCD. My family doctor was slow in responding to my protein spillage and swollen feet so I went to the city where the teaching hospital is located, and had myself admitted to emergency. They kept me for two nights and three days because my blood pressure had soared to 180/130 which at age 71 is not a good thing. So, if anyone thinks that their doctor is slow to act, remember the emergency hospital route, and make sure they have a nephrology department, which many teaching hospitals do.

By fsgsblahs
Posted July 8, 2008 at 7:12 am

Vanessa-

I kind of feel the same way as you, wondering if I have truly been diagnosed correctly. My biopsy says that I show signs of FSGS, except for about 5 other pathological symptoms...what??? So, what about all of those other things then?? My new family doc says that it is possible that I may have something else.

I am confused a lot as well, but what can we really do? I am going for my 3rd opinion at a teaching hospital also and I have since e-mailed a neph at one of the 'ivy league' hospitals and he is also taking a look at my records. I don't know that I will hear anything different, but I definitely think it is worth hearing what others say. I have heard of a lot of mis-diagnosis issues concerning FSGS.

I know I would feel much better, if a neph would just be a little empathetic and not get upset about taking time to answer questions. I would also like for them to take the time to fully explain 'why' to any of my questions. No, I don't ask why I have this, but why don't we treat and several other medical questions. I will continue to search for a neph who will treat me as a person and not just another number with a co-pay!

By vanessakb
Posted July 8, 2008 at 1:09 pm

I agree 110%. It is their job to answer your questions and it is there job to treat you the way you wish to be treated. I would write a letter to the hospital board if you continue to feel that way. I am so done dealing with people like that. And the copay thing is exactly right. At least we are paying our copays and have insurance. GRRRR.

I go and see my second opinion tomorrow. Don't know where my protein levels are. And it has been kind of relieving not worrying about it!!

By Aweson-son
Posted July 8, 2008 at 1:22 pm

I had a second biopsy, that also came back MCD, but they still think I have FSGS because of the way my body acts. They may order a third one, but I am waiting to find out. My neph told me that after two biopsies that if they didn't find it from those, chances are they won't because it is too deep? So, I trust her in that and they are going to treat me as if I have FSGS instead of MCD. Like I have said many times on here, she is sending me to her teacher to find out what he thinks. I am excited for that, and hope he has answers. I think a lot of people go thru this where they feel like they are left in the dark. My first Neph, just didn't care.... period. I am on my second, going to see a third, but remaining under the care of my second. I like her, but... I guess I will never be satisfied. I have become to HATE doctors. Hope that helps. I would go with the guy you like.

By fsgsblahs
Posted July 8, 2008 at 8:43 pm

I will post this in my journal, but I had the 'day from hell' at today's neph appt.!!!!!!!!! Including drive time, I was gone for 7 hours!! It's only 40 minutes away and nooooo, I wasn't in with the doc either! I am going to speak to the medical dirctor about it, because this is the second time it has happened in my only 2 visits! ARE YOU SERIOUS!!??!?!?!? Sorry, but I don;t literally have all day! If they can't correct this situation, I will inform them that I will not return.

Aweson-

I feel your pain. It seems weird that they can't find out which one you have! And then to just treat you for a guess and see what happens?? How odd and I might be a little skeptical about all of that....see what 'ole teach has to say first!

I would go to a thrid opinion too....matter of fact, my 3rd opinion is in just 2 weeks. This place is great and they are usually waiting for you to get there, vs. you waiting for hours.....they have just got it going on! Today's visit was with the 2nd opinion and by the time I sit and wait for 4 hours, I am too pissed to even care what he has to say. It's not his fault, but the rest of the staff/ nurses just suck!

I don't trust many of them either, but I think it is more to do with their treatment and condescending attitudes. I can say, however, that Mr. 2nd opinion was much more thorough today since he had his little intern in the room....whatever. In april it was too late to do anything for me, as far as treatemtn, but suddenly today it is Cellcept and prednisone. Are these people high or something? lol I have the script, but I am not doing anything until I go to IU or Columbia e-mails me back.

By Jenny1
Posted July 10, 2008 at 10:01 am

Aweson - what kind of biopsies have you had? Were they all needle biopsies? When I got sick way back when, they were struggling to figure out what was wrong with me because my needle biopsies were coming up healthy. They said it was MCD, but thought it was something more because I was steroid resistant for a year. After the third needle biopsy came up clean, they decided that it would be best to do an open biopsy. It sucked, but they were able to determine it was FSGS from that. I don't want to recommend having a big surgery like that, but if your doctor really does think it may be FSGS, that may be the only way you can confirm it. Basically what I was told was that I was at the beginning stages of the disease and I had more healthy tissue then scarred tissue. And if that's the case, it's difficult to get a sample of the scarred tissue through needle biopsy. Just something to think about...

By vanessakb
Posted July 13, 2008 at 12:33 am

Well its official. I do have FSGS...a little bummed, but was expecting it. The good thing is I get to stop taking Cellcept and he said to go ahead and try to have kids...ASAP. He told me the clock is ticking. He also told me I was the healthiest patient he has (i would hope so I'm only 28). So I will wait AT LEAST six weeks to start trying for babies to get this nasty medicine out of my system and then he wants me to go to a high risk OB!!!

Thank you to everyone for your thoughts and advice!!!

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