Frustrated and tired

[knnucci]

Hi I am new to this forum and I have been reading many of the stories on this forum. It seems like almost everyone is going through what I have been going through. In Sept/Oct of 2009 at the age of 18, I started getting symptoms of GM. At the time I had no idea what was going on and had just moved into my dorm for college so I didn't have a parent or anyone to question about it. About a month later I started getting really bad fevers in the night but at the time I thought I was just waking up with night sweats. I had a lump at the time and was just keeping an eye on it because I didn't know what to do. The week before Thanksgiving I went into my family doctor and she diagnosed me with regular mastitis and put me on an antibiotic. Eleven days later I was still having sweats, was in more pain than before and completely at a loss as to what to do. Went into the ER that night and they still thought it was mastitis so they started me on three different antibiotics and I went throught two more by the time my two weeks there were finished. Had a biopsy, two utrasounds, and a mamo done while in the hospital. They thought that the antibiotics were helping so they sent me home with another antibiotic (seventh since starting treatment) and told me that if it wasn't getting better to come back. Over the next two weeks I was still having major fevers and not any difference. On new years day I had a fever of 103 for four to five hours and thats when we decided I was going to go to the University Hospital in Denver. When we got there they started me on another antibiotic and admitted me. Over the two weeks that I was in the University Hospital I was on another four antibiotics (one that I was alergic to) and had two utrasounds and a biopsy done. With anywhere from fifteen to twenty doctors looking at my case in Denver there was a surgeon that found information on GM. They started me on prednisone and that next day I felt amazing, better than I had in months. I was on prednisone for five months and it seemed like the GM had gone away when a week ago I found a lump again and that next day went in to see my doctor. Confirmed that it was back and we are now once again in the abyss of the unknown and I think that is why I am so frustrated and tired. After missing my first semester finals week and then my whole second semster of college, I don't want to be put behind any more. I haven't seen any posts by anyone my age and I was wondering if anyone out there is as young as me and is dealing with this and school. I am happy that I have found other women with the same diagnosis as me because being out of the loop is very frustrating and I am happy to have people to talk to.
--Thank you--

[JoJo45]

I really hope that you don't go mastectomy route just yet - some of us don't have to do that and it goes away so please don't lose hope yet.  I am really hoping for you to have this burn out (it does do this), and I think maybe the fact that you have not given birth or breastfed may help you with having a less complicated course of disease.

I had all of the tests for TB and the weird types of fungus too, makes you feel really great, special - but most of the women here have had these tests too and I am sure they will be negative.

One thing I learned early on - don't check out everything you hear that you might have on the internet - that just leads to nightmares.  Now I only check out things once I have them :)

I hope you do get a rheumy closer.  Is it a possiblity to have your slides of your biopsies sent somewhere else for a second opinion?  To a centre that has seen more cases?  When I was first diagnosed I had a work program that allowed for second opinions and all of my actual cultures and slides were sent to Harvard for retesting - so I think they keep these things in the lab and they could be retested if they don't want to go back in to disturb your breast.  You need a pathologist who has seen this before.  Seems like they have not seem very many cases in Denver given what you had to go through before anyone even brought this forward as a possiblility.  I am sure you would feel much better to have a definitive diagnosis, even though it is a diagnosis of a 'mystery disease'...I often wonder why this has happened to me - I am sure you have too - GM is a real experience.

Do you think your doctor would be open to having a second opinion - not sure what your insurance system in the US allows?  

I really wish we could establish one center where all of the slides were sent and they could start creating a centre of expertise.

I feel for you because I know how all of the uncertainty affected me as a grown woman and you are really too young to have to be dealing with this - there are other women on the forum in their early twenties, so you are not alone in that respect.

Please don't give up on the treatments yet.

Jo

[knnucci]

They have tested for TB and yesterday they did another biopsy of the breast. They are making sure it is not some crazy fungus that they haven't ruled out. My doctor is reluctant to put me on methotrexate because of how harsh it is. She is looking into finding me a rheumatologist here in my home town so I don't have to drive two hours for my appointment and she said if he knows more about the methotrexate she may be willing to put me on it. She wants someone close to watch the side effects of it. The prednisone I was on for about five months and it was about eight and a half months before I had a lump again. So it was a little before the flare up but not as long as I had hoped. At the end I may consider the mastectomy if that seems to be the only diffinitive cure for it. I'm still on the fence for that thought.

Thanks
K

[JoJo45]

Hi - sorry (I am not very sharp these days) just read on your other post that your biopsies are not definitive.  Did they test your for breast tuberculosis?  I am sure they have, but I know it can rarely be a cause.

Cheers, JO

[JoJo45]

Hi there

So sorry to hear about all of your troubles - you are so young and just away at school and it doesn't seem fair that you have this pain to deal with

I read somewhere that the youngest case every diagnosed was 11 - the vast majority of women with GM are of childbearing age and have had children and breastfed within the past 4-6 years before they are diagnosed.  Some cases are like me though (I was 43 when diagnosed and I have never had children.  I don't think we have every had anyone your age on the forum before.  But we do have other young women so I hope you find some comfort with people you can relate to here.

Did they ever actually find GM cells on biopsy?  or is yours a diagnosis of exclusion.  I am so sorry that you seem to be starting the cycle again, but I have found each cycle is different and in the cases where GM does 'burn itself out', this happens in time and with susquent bouts, each is lesser in symptoms and length, etc., so I sure hope that you have that experience.

It seems like you have written that you did well on the predisone, and then have discontinued this after five months and now have the new lump (not sure of the time frame between discontinuation of the drug and the new lump).  One of the reasons prednisone or other corticosteriod therapy, on its own, has fallen in to a bit of disfavour, is it is very common to have relapse of the disease once the prednisone is stopped - sometimes methotrexate is used in conjunction with prednisone to assist in this cycle - it seems to prevent relapse.  Methotrexate is also being used on its own now.

I am sorry because you are so young, it is tough to have to consider these strong drugs for you -- I am sure that this is a big consideration of your doctor.

I wish you well - let us all know any questions and how you are doing,

Jo