Visited myositis.org---OMG

[Tinker]

I thought the fibromyalgia, Sjogren's,  Hashimoto's, and breast cancer was bad.  Since the neuro wanted me to have the muscle biopsy, I'm obviously concerned about the possibility of having polymyositis.

Polymyositis can be pretty devastating.  Many of those patients overlap with Sjogren's and/or other AI problems.  I'm overwhelmed but what I've read. 

I know, I know...... too much info without enough facts can lead to unnecessary worry.  But, I've always been inquisitive and the nurse in me believes that knowledge is power.

As slow as the docs are moving on this, I"D BETTER HAVE A HANDLE ON WHAT'S GOING ON WITH ME!!! I first saw the neuro back in August.....it's now Nov. 10th and I still don't have a diagnosis or a treatment plan.

Whatever it is, I'd like to get on with it.  Thanks for listening.                                           Tinker

[Lowell]

Hi Tinker!

Sorry to hear this is going on! What stress you must be under! Have you had the muscle biopsy yet? If not, can your doctor order it soon? I know all about searching online and reading scary stuff. Before I was diagnosed, I would google my symptoms and think I had all sorts of diseases. One of my symptoms is swollen lymph nodes (in my neck, under my arms, groin) so my doctor sent me for an ultrasound because he though I might have lymphoma. And the ultrasound was abnormal so I had a biopsy done in July. Thankfully it came back negative. And then I was diagnosed with SjS in Aug. But before the biopsy results came back I spent hours online reading about lymphoma. To sum up- I know why we shouldn't read those websites but completely understand the need to do so.

Last week I found a lump in my left breast so I'm having a mammogram and ultrasound done tomorrow. After freaking myself out over the possible lymphoma diagnosis, this week I really tried to not freak out and just wait till I have the test results (easier said than done though). I keep telling myself that it's just a cyst and that I'm too young (22) to have breast cancer.

I really hope that you find answers soon! I too hate the unknown! Feel better!

All my best,
Lowell

[Tinker]

Hi Lowell,
You are only 22!  Sure hope you have no problems with the breast lump. That's gotta be scary especially after the lymphoma scare.  What did they say caused the lymph nodes to enlarge?

Yes, I already had the biopsy 4 wks ago.  Still waiting as the neuro wants to examine the slides personally.  The written report and pics that were sent to her showed inflammation, atrophy, ragged muscle fibers, atrophy.  Not certain, but none of that sounds encouraging. 

I've been watching Mystery Diagnosis today and so many of those stories are solved by the patients themselves....getting on the net and figuring out what the heck is wrong.  It's a sad state of affairs when we have to tell the doc what test to run.

I've been there before. Thanks for your reply...much appreciated. Keep us posted as to your mammo results. Prayers coming your way.

[kelene]

I love that site.. It has helped me out so much.. I hope it helps you too

[Victoria05202000]

Tinker,

It is scary as Heck to try and diagnose yourself.  I too believe that you must take your own health in your hands and help health professionals.  I hope that everything comes out negative for you.  The waiting is the hardest part for me.....when I am waiting to get a procedure done or waiting on test results or answers.  I be thinking about you.

Take Care!
Vicky

[Tinker]

Thanks , Victoria.  Yes, waiting is always the hardest.

Kelene, that site was wonderful and full of information. But, it is scary to see what can happen.  Guess I am just overwhelmed.  The thought of being paralyzed is scary.  Why, oh why didn't we take out long term care insurance?

Too late now.  Couldn't afford it anyway.                                   Tinker

[kelene]

it is overwhelming... but try to remember that DM /PM are usually bery responsive to treatment.. so once you know exactly what you are dealing with hopefully you'll get the right treatment

take care

[Lowell]

Hi Tinker,

Got the mamo and ultrasound results and everything is fine! YAY! The dr thinks it's just a fat deposit. As for my swollen lymph nodes, my rhuemy thinks that they are swollen because of SS.
Also, I watch Mystery Diagnosis too! I absolutely love that show! I found that show before I found this site and it was so nice to know that other people waited so long for the proper diagnosis and that I wasn't alone!

How are you doing? Any word from your doctor. Sending good thoughts and prayers your way!

All my best,
Lowell

[Tinker]

Hi Lowell,
I have had breast cancer and have heard many stories about GP's and GYN's telling women to wait, or it's only a fat deposit.  I don't mean to scare you , but I think you should see a breast oncologist to check your breast.  It's a little insurance policy for your life. 

It may be nothing, but since you have other swollen lymph nodes, I'd see a specialist FOR SURE!

I'm doing great and thank you for asking.  I went to a wedding this wkend .  My son was in the wedding but it was very stressful.  I drove 4 hrs. with the groom's mother who has a hoarding problem....she's difficult to get organized and get anywhere.   She arrived an hr. late to the rehearsal, and was almost late to the wedding.  I had to be forceful with her at times.  Wish I knew what to do to help her.  Researching the web today to see what can be done. 

It's fabulous to be HOME!                                         Tinker

[irish]

Lowell, Just a note to let you know that for many years I have had swelling of tissue under my left arm and in my left breast. I could never feel any swollen lymph nodes, but I would be really sore in both these areas. The last mammogram showed something that had shown up before. I had to have an ultra sound and they checked me really good. Turns out it is a swollen lymph node in my breast. It gets sore and swells up and then it goes away. I had this for many years and this is only the second time it showed up on the mammogram.

It doesn't hurt to get a second opinion though. I plan to get mine checked again down the road. If it continues to cause issues I may insist on a biopsy. Good luck Irish

[Lowell]

Tinker- Glad to hear that you're doing well!!! I forgot to mention that when my GP got the negative results from the mammogram and ultrasound last week, he sent me to a breast oncologist who aspirated the mass and sent it off to the lab. The results came in today- it was negative! Thank you for your concern & advice! I love weddings! They are so wonderful! Sorry to hear that it was so stressful though- weddings should just be about eating good food and dancing! Oh and about love! I'm not famililar with hoarding but I hope she gets help.

I want to search this site and see if other people have had problems with swollen lymph nodes.  My doctors assure me everything is ok but I still worry. Before I got the SS diagnosis the doctors thought I had lymphoma and I had a PET Scan done. The oncologist I saw said it was normal. The official results said that there was "very faint activity in the upper anterior mediastinum" and "2 or 3 very faint lymph nodes in the right axilla and supraclavical areas." The doctor explained to me that if I had cancer the scan would have had really bright activity, not faint activity like mine.  Also, the biopsy that was done came back negative for lymphoma but the lymph nodes were "reactive". Which I was told was consistent with SS.

Needless to say that I'm not only happy I don't have lymphoma but I'm so happy that the breast mass aspiration came back negative! I have to go for a MRI of my rib cage soon- as the lower part of my left ribs stick out and seem to be expanding outward. I know that sounds really weird (but it looks even weirder). I just have had so many tests and scans done that I don't want anymore! I wish things didn't keep going wrong- especially because I feel like a crazy person.

Irish- that's interesting.  My lymph nodes are hard and swollen but not sore or painful. Get a 2nd opinion if you want! The biopsy wasn't that bad either! Thanks for sharing your experience!

All my best,
Lowell

[Tinker]

Hi Lowell,
So glad your FNA was neg and also your PET scan.  I've never had a PET but I'd like to have one.  I'm not sure what I will find out on Thurs. (the muscle biopsy) and if it is positive, I am going to have some tests done to rule out cancer.  The two seem to go together.  ....get rid of the cancer and the myositis goes away, too. 

Good luck with your rib MRI.  How peculiar that they are protruding???  I'm senidng you healing vibes that all goes well!

                                               Tinker