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bizi 07-28-2018 08:45 PM

That is a very good suggestion donna.
bizi

Mari 07-29-2018 10:06 AM

Sending lots of good thoughts for you, Kay.


The BR issues can freak me out sometimes too.

Magnesium stopped working for me.
Of course ice cream or nutella or anything with fat seems to work until they don't.
++++++++++
Prune juice worked well recently.
I have found that prunes work for now. I take 6 a day & drink water.

Lots of good energy being sent your way.
:Grin-Nod:


M

mymorgy 07-29-2018 10:23 AM

I found out a lot of chocolate really works

Mari 07-30-2018 06:38 AM

Quote:

Originally Posted by mymorgy (Post 1265900)
I found out a lot of chocolate really works


Chocolate works great!:):):)

Mari 07-30-2018 06:39 AM

Thinking about you, Kay.


Hope things are o.k. Sending good thoughts.:):):)



M

bizi 07-30-2018 08:01 AM

kay, I hope you had a good weekend.
((((HUGS))))
bizi

Dmom3005 07-30-2018 09:25 AM

Chiming in with all others. Hoping all went great this weekend.

Donna :hug::grouphug:

OhKay 07-30-2018 10:36 AM

Thank you ladies (((HUGS)))

Donna, you are right.

He should have known that I have a neurologist because I have MS, but if he was unsure, he could have easily found out that I do, who he is, and given him a call/sent him a note.

Instead, he thought he knew better, and made a WHOPPER of a mistake...

In short: The radiologist compared my recent MRI with the one I had back in February of this year and found no significant changes (which is good, and why I take Tysabri). But he mentioned that there were no significant changes to the two huge lesions I've had since 2008 (which is where my PCP got confused).

He came to the utterly ridiculous conclusion that there were no significant changes AT ALL since my diagnosis in 2008, so he was questioning my diagnosis and wanted me to be re-evaluated in Boston...
So the arrogant SOB must think that all the doctors I've seen over the last 10yrs (including 2 at prominent MS centers in Boston) must be incompetent, and I must be bat s- crazy :rolleyes:
So, I sent another message through the patient portal saying that *I think* he read the radiology report incorrectly, explained what it actually said, and suggested he contact my neurologist if he has any questions/concerns.
I can't wait to see what kind of reply I get... if I even get one, but I think I am owed an apology.

Since he couldn't take the time to properly read the radiology report, somehow I doubt he will read my nephrologist's notes carefully enough to catch that my BP was 102/33 in his office.


As far as the rest of it, the practice is too busy. They have taken on more patients than they can properly care for...
I think the main problem is that I've never even been properly examined, and nobody has taken the time to sit down and actually listen to everything that's been going on, and ask me relevant questions.
I've seen the NP two or three times, but my PCP is booked until November, so I've been relying on messaging him/his RN, and obviously that's not working out very well for me.
I would like to make a change, but I need continuity of care because of all the referrals I need for specialists. I will see how the appointment with the surgeon goes, and will decide where to go from there.

In the past, my pdoc has been very helpful with advice in handling some of these types of situations, so I look forward to seeing her on Wednesday...

bizi 07-30-2018 07:51 PM

sorry for the mess up.
will see if he responds to your portal post.
yes you need him for your referrals.
unfortunately....
bizi

OhKay 07-31-2018 08:36 AM

I got a message back saying that my PCP had "read my note" and wanted to know what my neurologist recommended...
I wrote back that he had no light to shed on my current situation, except he mentioned that I'm on a lot of medications. And as far as my MS in general, he wants me to continue with my Tysabri treatments. I said that I was doing pool PT because of a relapse several months ago, but missed 2 out of the last 3 sessions because of dizziness/lightheadedness, and was unsure if I would continue because my BP in the nephrologist's office was so low, which scared me.

I just finished a 24 hour urine for my nephrologist, and I have to send a sample back to a private lab via FedEx. There's a spout on the collection container so you can empty some urine into the vial, but it wouldn't close back up on me, and I got pee all over the BR floor. Not a great way to start the day, especially since I have OCD.

Tomorrow I have a Tysabri infusion at 8am, followed by a pdoc appointment at 11... I'm going to be run ragged, but I had no choice but to schedule the appointments or the same day.

I'm doing okay, but I may be MIA for a little while. I will be busy, which means I'll probably need more time for myself. I will check my PM's in case anyone wants/needs me.


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