My last post about the urgent care DR etc, was kind of the catalyst for the next few updates- I am smooshing a few posts from my other blog into this one, to get the info out there,so if this is scattered, that is why...
Because my previous primary had been brushing me off for so long, its been like working double time to get stuff done before we trip to CA-
SO first things first- Appt with the new primary DR was ammmaaaazzzing!!! She was everything I have been looking for in a DR and then some...Too bad I am leaving in less than 2 weeks from here, But she will advocate for me from afar if need be and I already have a new patient primary appt set in CA with a family medicine internist.
So we ( the primary in NY) went over family history and some of the test results they did in Urgent care last week...She then drew even more blood...
The plan for now: I will see a gastro specialist ASAP (been having random vomiting about 3 to 4 times a week now, for the last 6 months, which, whatever is causing that, could have caused the inflamed lymph in my abdominal wall) The earliest sppt I could get, which was a miracle anyway, was June 17trh....Then, once in cali, I nee to see a Rheumatologist (My White blood cells are still elevated for no reason, and lymph swelling randomly, and bone pain). Then, A Neuro, to rule out MS (I have random tingling and numbness, and double vision etc that comes an goes, they wanted me to have a MRI for that a year ago, but my deductible was 10 grand, and there was NO way I could afford that- I also, admittedly hoped if I ignored it, things would get better). And, finally the OBGYN to do the biopsy for the thing in my uterus (went friday for that, update below)...Whew...I think, at the end of this, I will have seen every specialist in modern medicine there is, and hopefully, we have some answers for everything....
Friday (6/6/14)I went to to see the OBGYN about the mass in my uterus that was found a couple weeks ago at the urgent care visit and was mentioned above-
I really don't feel like going into all the nitty gritty details, like how every pregnant and newborn that could have been in the office, was there...So Ill keep this short
The OBGYN said the mass/growth is a combo of endo and Adenomyosis, that has considerably embedded in between the posterior uterine muscle/wall. It does not "look" cancerous in nature, but there is NO way to biopsy it due to the location, size etc, and a Hysterectomy is suggested for the future....If it grows at all or change by next can, it won't be a "recommendation" ...OUCH..What a hit...NOt what I expected to hear...
Obviously I dont have to do this, right NOW, but soon..... Once we get set up with DR's out there, I need a re scan of the area and a second opinion. (The OBGYN appt yesterday was already the 3rd opinion at this point if you count the ER doc's). Of course, it does NOT take a rocket scientist to figure out that a Hysterectomy would be the utter worst thing for me right now , emotionally speaking, having lost SO much, so many babies, the chance to just choose to have more children like most of the world..soooo much has been lost.....Not to mention, the issues that can arise with prolapse after taking out that MUCH of your insides...I do NOT want my bladder falling into my vagina! Not now, not ever....
my OBGYN did say, the mass is the LEAST of my issues, and they should be biopsying the lymphs that randomly swell with no rhyme or reason for the last 6 + months, and figuring out the source of the Bone pain and elevated WBC's etc...:::sigh::: every DR I see wants to point a finger at another DR and say "they should be doing this or that"...Meanwhile I am stuck in between, and believe me when I say, I am NOT new to being my own advocate, but when you are dealing with THIS MANY different specialists and DR's...OMG!!!!!! Brain is fried!!
While updating this blog on draft yesterday, with the above info, I get a call back from my primary I saw last wed here in NY- and some of the blood work is back- the celiac test will be back in a couple more days, but, white blood cells are still elevated for no reason (they can't understand right now anyway) and now, for the first time ever, my ANA came back positive...(here is a link about ANA)
I have been tested for ANA many times, specifically after our 19 week loss, but most recently in Feb last year with a reproductive DR (braverman) after a loss, and even this last fall when they were trying to find the source of my passing out issues - and then many times in the past after other losses etc- It was always neg before- even though we know I have some auto immune issues already (Hashimoto's) the tests have never come up positive outside of the tests braverman has done- This time, it was not, it came back positive... I did not ask for the numbers or the pattern, because one, It freaked me out the DR called me personally, and I honestly I am burnt out on googling everything...I just want this nightmare to be over with my health....I want to MOVE to CALI, and start a new chapter...Can I some how get a new body too?? LOL...
So that is about it for this week and my health. we will know more once I get established with the many specialists in Cali. It will probably be late this fall before I even get an official diagnosis....
Thats it for now.
Because my previous primary had been brushing me off for so long, its been like working double time to get stuff done before we trip to CA-
SO first things first- Appt with the new primary DR was ammmaaaazzzing!!! She was everything I have been looking for in a DR and then some...Too bad I am leaving in less than 2 weeks from here, But she will advocate for me from afar if need be and I already have a new patient primary appt set in CA with a family medicine internist.
So we ( the primary in NY) went over family history and some of the test results they did in Urgent care last week...She then drew even more blood...
The plan for now: I will see a gastro specialist ASAP (been having random vomiting about 3 to 4 times a week now, for the last 6 months, which, whatever is causing that, could have caused the inflamed lymph in my abdominal wall) The earliest sppt I could get, which was a miracle anyway, was June 17trh....Then, once in cali, I nee to see a Rheumatologist (My White blood cells are still elevated for no reason, and lymph swelling randomly, and bone pain). Then, A Neuro, to rule out MS (I have random tingling and numbness, and double vision etc that comes an goes, they wanted me to have a MRI for that a year ago, but my deductible was 10 grand, and there was NO way I could afford that- I also, admittedly hoped if I ignored it, things would get better). And, finally the OBGYN to do the biopsy for the thing in my uterus (went friday for that, update below)...Whew...I think, at the end of this, I will have seen every specialist in modern medicine there is, and hopefully, we have some answers for everything....
Friday (6/6/14)I went to to see the OBGYN about the mass in my uterus that was found a couple weeks ago at the urgent care visit and was mentioned above-
I really don't feel like going into all the nitty gritty details, like how every pregnant and newborn that could have been in the office, was there...So Ill keep this short
The OBGYN said the mass/growth is a combo of endo and Adenomyosis, that has considerably embedded in between the posterior uterine muscle/wall. It does not "look" cancerous in nature, but there is NO way to biopsy it due to the location, size etc, and a Hysterectomy is suggested for the future....If it grows at all or change by next can, it won't be a "recommendation" ...OUCH..What a hit...NOt what I expected to hear...
Obviously I dont have to do this, right NOW, but soon..... Once we get set up with DR's out there, I need a re scan of the area and a second opinion. (The OBGYN appt yesterday was already the 3rd opinion at this point if you count the ER doc's). Of course, it does NOT take a rocket scientist to figure out that a Hysterectomy would be the utter worst thing for me right now , emotionally speaking, having lost SO much, so many babies, the chance to just choose to have more children like most of the world..soooo much has been lost.....Not to mention, the issues that can arise with prolapse after taking out that MUCH of your insides...I do NOT want my bladder falling into my vagina! Not now, not ever....
my OBGYN did say, the mass is the LEAST of my issues, and they should be biopsying the lymphs that randomly swell with no rhyme or reason for the last 6 + months, and figuring out the source of the Bone pain and elevated WBC's etc...:::sigh::: every DR I see wants to point a finger at another DR and say "they should be doing this or that"...Meanwhile I am stuck in between, and believe me when I say, I am NOT new to being my own advocate, but when you are dealing with THIS MANY different specialists and DR's...OMG!!!!!! Brain is fried!!
While updating this blog on draft yesterday, with the above info, I get a call back from my primary I saw last wed here in NY- and some of the blood work is back- the celiac test will be back in a couple more days, but, white blood cells are still elevated for no reason (they can't understand right now anyway) and now, for the first time ever, my ANA came back positive...(here is a link about ANA)
I have been tested for ANA many times, specifically after our 19 week loss, but most recently in Feb last year with a reproductive DR (braverman) after a loss, and even this last fall when they were trying to find the source of my passing out issues - and then many times in the past after other losses etc- It was always neg before- even though we know I have some auto immune issues already (Hashimoto's) the tests have never come up positive outside of the tests braverman has done- This time, it was not, it came back positive... I did not ask for the numbers or the pattern, because one, It freaked me out the DR called me personally, and I honestly I am burnt out on googling everything...I just want this nightmare to be over with my health....I want to MOVE to CALI, and start a new chapter...Can I some how get a new body too?? LOL...
So that is about it for this week and my health. we will know more once I get established with the many specialists in Cali. It will probably be late this fall before I even get an official diagnosis....
Thats it for now.
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