[Evonne]

I am going to try and keep this short and sweet. The new MDS said that he would not look at me the way that I presented today and come to the conclusion that I have Parkinson's Disease. He did take into account that I am still carrying meds on board and I might be different when they all wear off and completely leave my system. Another thing that he commented on was that my tremor is too fast for PD. I didn't take my meds this morning, so I was my usual shaky self and that was evident throughout the exam. This doctor has a different philosophy than my previous doctor. He doesn't believe in just trying a medication to see how a person responds. He said that that is not the way to find the answer and he said that it is possible to have other things that actually do respond to Mirapex because of similarities. This doctor prefers to be the scientist first and try and figure out what is going on , then try medications. I am certainly with him on that one! He wants me to go off of the Mirapex and he gave me a step down plan to follow and I am supposed to keep him updated on how I am doing. I am a little nervous, but I am going to do it and see what happens.


This is where it gets interesting. I am a type one diabetic. This was determined by a GAD Antibody test that was performed about seven years ago. I also had the same exact test repeated in April of this year. My GAD level was 2.0 and that is above normal. Apparently, GAD antibodies can indicate other diseases. There is something called Stiff Person Syndrome, or SPS, that my MDS is concerned about. He was in disbelief that this information about my elevated GAD levels was right in my chart and three doctors saw it and just dismissed it. Well, he is looking into it. He ordered an EMG and a bunch of very specific blood work. In addition to Stiff Person Syndrome, he is also looking into/ruling out the possibility of Thyroiditis as well as something called Paraneoplastic Syndrome. I had already read up a little about SPS, but not the other things that he is considering/trying to rule out. I am not too c oncerned about the Thyroiditis, it seems like it would be simple enough to fix. However, I am concerned about the Paraneoplastic Syndrome. If you are interested, read up on it. The Mayo website has some really good info. I am going to copy and past this from their site. I am not sure if this is okay or not, but here goes! If this is not okay, then sorry :-( Do what you have to do and delete it.

Here it is:

What are Paraneoplastic Syndromes?
Paraneoplastic syndromes are a group of rare degenerative disorders that are triggered by a person's immune system response to a neoplasm, or cancerous tumor. Neurologic paraneoplastic syndromes are believed to occur when cancer-fighting antibodies or white blood cells known as T cells mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older persons and are most common in persons with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to tumor detection, which can complicate diagnosis. These symptoms may include difficulty in walking and/or swallowing, loss of muscle tone, loss of fine motor coordination, slurred speech, memory loss, vision problems, sleep disturbances, dementia, seizures, sensory loss in the limbs, and vertigo. Neurologic paraneoplastic syndromes include Lambert-Eaton myas thenic syndrome, stiff-person syndrome, encephalomyelitis (inflammation of the brain and spinal cord), myasthenia gravis, cerebellar degeneration, limbic and/or brainstem encephalitis, neuromyotonia, and opsoclonus (involving eye movement) and sensory neuropathy.

Okay, now you have a general idea. I think that the reason that the doctor might be concerned with this is because I found a lump in my right breast two years ago. The doctors have been following it and have told me that it is a Fibroadenoma...not cancerous. Apparently, with this Syndrome you can have symptoms before you actually develop cancer. Yep...that is a little SCARY!!! The doctor asked if I had ever had a needle biopsy or a PET scan. I have not. I have only had x-ray, mammogram and ultrasound. I need to go in for a follow up and get this all checked out again.

Obviously, I have a bunch of stuff running through my head right now and I am not sure what to think about any of it. My doctor is going to call me after he receives the results from my EMG and blood work. He is going to forward it on to another doctor that he knows at the Mayo Clinic. He speculated that it might be a little more than two weeks before I hear anything from him. I am just going to focus on today for now. Tomorrow will take care of itself. I will post more as I have more information.

Thanks for all of your support!

Evonne

[ZucchiniFlower]

Hey, Evonne, I like your new MDS and it seems you do too!

There are antibody tests to check for paraneoplastic syndromes. My neuro refused to test for them, five years ago. He said to have the regular cancer screenings instead. I've always been vigilant about my mammograms, but didn't know at that time that I did in fact already have breast cancer, because it didn't show up in the mammogram because my breasts are very dense.

So, I hope you have had digital mammograms and MRIs to follow your lump. One of my lumps was a benign fibroadenoma and I did have three biopsies at the same time, only one was cancer.

Why did you not have a biopsy?

Sometimes people have that syndrome and they never find the actual cancer that is causing it!
Did you have any blood drawn for antibody testing?

I hope you fare well getting off your meds. Maybe some nutritional support, as discussed in threads here, would help.

~Zucchini

[MKane]

Evonne.

I too think you hit the jack pot with your new MDS. He seems to focus on the patient and acutally think. So few of them do. My concern regarding your post is the mammograms and biopsies. A PET scan would be more accurate and less invasive and dangerous. If you know that you have dense breasts and a growth of some sort why oh why smash it and radiate it? Mammograms are known to miss so much, why count on them?

Good luck.

Mary

[Evonne]

Originally Posted by ZucchiniFlower

Hey, Evonne, I like your new MDS and it seems you do too!

There are antibody tests to check for paraneoplastic syndromes. My neuro refused to test for them, five years ago. He said to have the regular cancer screenings instead. I've always been vigilant about my mammograms, but didn't know at that time that I did in fact already have breast cancer, because it didn't show up in the mammogram because my breasts are very dense.

So, I hope you have had digital mammograms and MRIs to follow your lump. One of my lumps was a benign fibroadenoma and I did have three biopsies at the same time, only one was cancer.

Why did you not have a biopsy?

Sometimes people have that syndrome and they never find the actual cancer that is causing it!
Did you have any blood drawn for antibody testing?

I hope you fare well getting off your meds. Maybe some nutritional support, as discussed in threads here, would help.

~Zucchini

Yes, I have a lot of confidence in this doctor. I think he is going to figure me all out. Yes, he did run the blood tests for paraneoplastic syndromes...and a bunch of other rare things. Seriously, I think I waited about 10-15 minutes at the lab while they were busily looking things up to make sure that they ran the right tests. Apparently, these tests are not things that get run on people every day.

I didn't have a biopsy on my lump because the surgeon that I saw said that because my lump was so small and hard it would probably be easier to remove it than to biopsy it and he seemed fairly confident that it was just a non cancerous fibroadenoma. I have had so much going on that my breast lump isn't something that I have put a whole lot of time and energy into thinking about...probably not smart of me. Although a lumpectomy is a simple procedure, I dislike the thought of anesthesia again. I never do well with it. I am going to wait for the test results, then I will go from there. Obviously if I have paraneoplastic syndrome, the lump will be coming out and we will be looking at everything throughout my body. What makes me nervous is that back in April my body hurt so bad that I seriously felt like I had to be dying of something. I am not esaggerating. My body ached and hurt so bad all over that I was beyond miserable. I just hope that it turns out to be okay.

Thanks for your concern and support.

Love,

Evonne

[Evonne]

Originally Posted by MKane

Evonne.

I too think you hit the jack pot with your new MDS. He seems to focus on the patient and acutally think. So few of them do. My concern regarding your post is the mammograms and biopsies. A PET scan would be more accurate and less invasive and dangerous. If you know that you have dense breasts and a growth of some sort why oh why smash it and radiate it? Mammograms are known to miss so much, why count on them?

Good luck.

Mary

Mary,

I think the new MDS is awesome. I get your point about mammograms...kind of crazy, huh? I am going to see how the blood tests turn out and then approach this whole thing differently. As far as coming off of the Mirapex, I can hardly wait to have the swelling issue resolve, without taking water pills a couple of times a week.

Thanks for your concern and comments.

Love,

Evonne

[olsen]

as my favorite oncologist replies when individuals tell him their LMD said he/she was going to watch the lump found in one's breast: "watch it do what?" He feels Lumps that are not demonstrated to be cysts via ultrasound (and aspiration) are to be biopsied.

[libra]

souinds like this Dr. Santiago is very good. I am going to call him again in early january to see if I can get in. It's a shame at this point he can't take anymore patients. I am glad you saw him and he is being deligent in getting your symptoms diagnosed. A little scarey tho knowing the other things it could possibly be, parkinsons is almost better. Keep us posted.