posted
I went to a cardio doc for checkup Just something I felt needed done because being so sick for so many years.
He odered some test to make sure I haven't had an event in the middle of all this.
I Was able to get MRI quickly, but many notations on there ,I don't know.
I'M very nervious the back doctor got the results by mistake and cancelled the NONSTEROID shot I was to get Tuesday. wanted me to see big neurological group. several miles away.
I called rhe CARDIOLOGIST that ordered the scan ,his medical asst. said don't panic. we'll talk to dr. when he's back from surgery and call you.
They did and said ha DIDN'T know what to make of it a reffered me to someone in his building.
I left message it's GOING to be a very long weekend.
I came home and slupped in couch that I've been stuck on for two months.
I had started feeling the light come back a had a lot of dental work done. I came back that nigh sat on recliner in couch ,been there since.
It like I DON'T want to get stuck in my bedroom for another year.
It's terrible, I look like a couch horder, meds ,blankets couple of gifts ,tons of paper work from a bad hack of my information from BlueCross ordeal, millions were hit.
I lots some ground that had been in me 2-3months ago. I really thought I was on the mend. I could use Christian prayer.
posted
sorry I didn't re-read post hope you understand
Posts: 66 | From Colorado | Registered: May 2016
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What kind of "NONSTEROID shot [you were] to get Tuesday"?
Cancelling that could be a good thing if it's a "biologic" as those can be very similar to immune suppression as steroids. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As for getting through until you find out more, it's all a waiting game so I hope you can find some nice diversion in the mean time.
You have these days so don't let worry or dread of what might be darken these days. Don't let that invisible force take you over. You have control over how these days can play out (even if some restrictions due to health realities).
Allow into your life & your home as much fresh air, light and cheer as you can. Find some beauty in arts, music, words, travel films, poetry, nature, comics, etc.
Nourish yourself with flavorful good foods, some new kind of tea, perhaps. Or lemons / limes to make your own ade with stevia and sprig of mint.
You can set the tone from very calm to a bit rambunctious (even if just for a short time). Go a little wild & crazy just to try in on, eh? Pretend to write a comedy routine or make up a skit. Let your inner child have a some fun. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- check to see what that non-steroidal shot was to be.
posted
Keebler, I asked the doctors assistant for actual ingredients, He could olny guess.
That did make me nervous. I never heard of this other thing to watch out for with back shots.
one more big iffy along with this MRI deal I'm pretty nervous about that. Tovsay the least.
Posts: 66 | From Colorado | Registered: May 2016
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Most MRIs aren't totally normal. Whatever there is going on there is a good explanation for. Even things like "white matter changes" etc are not only considered normal but often even things that are abnormal are reversible.
Your brain knows how to fix itself if something's wrong.
Don't worry. They'll tell you and it will make sense.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
posted
I have prayed for you,you will find your way, have faith in the lord Jesus. You are on a life journey that is meant to shape you into the one you were meant to be. The blessings of disease is that you will grow through adversity and the result will be a better you. You can get well,I am ,been at it for many years but now have found a good place through the guidance of a physician who cares and the good graces of many answered prayers.
Posts: 342 | From northern california | Registered: Dec 2010
| IP: Logged |
posted
Kebler, I will write the words and fax them if I have to to get an answer.
This doctor may know a lit and is quick to tell you he does.
When I asked what could be done about my back, as in surgery, or laser etc. He said he had a few tricks in his bag.
At first it was great someone that is listening and is pro-active.
Now because of him getting the brain reading instead of just the neck area .
I'm getting strong, you better do this or I'M referring you now call today.
So of course I try to Google these words on the report. It gives you just enough info to scare yourself silly. After all the years and doctor's it took to find out what I was fighting, I should know better. I'm sure the Lord is like please chill.
thank you ,one and all for prayer, ideas ,guidance.
My home situation is difficult to say the least so I have few places to vent. Makaka
Posts: 66 | From Colorado | Registered: May 2016
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Praying for you makaka...hypoperfusion of t1 and t2 flair with white matter is common in lyme ..be grateful they did not say it was ms lesions and try to suppress your immune sx.
Jordand is right brain can heal or repattern ..i am counting on it too...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- makaka,
Ditto to what bluelyme says about "hypoperfusion" and "white matter" issues are very common for those with lyme. And it can get better with proper treatment, as Jordana explains. Healing can happen. Absolutely, it can. It has for others and it can for you, too.
About the injectable drug, you don't need them to tell you a list of each ingredient or any complicated fax or even discussion, really.
First, you just need from even someone on staff who can check your chart. Make it clear that it's just routine and that you just have not yet made note of it - so that you can better understand. Ask:
exact name of the drug, be clear as to if it's it the brand name or a generic. Take your time with the correct spelling of this.
the manufacturer,
dose history - and what's suggested if you are to continue it
Is that combined with any other drug or solution before it's injected?
That's all you need from them on that point.
and then you can go directly to the manufacturer's website for your first stop.
then, search out more detail from others - just be sure they are top authors on the topic.
study it a little bit so you know what is you have been given in the past.
Since they are not going to do this as planned this week, you have some time to study it before the next time (if they want you to continue it).
However, about any Rx - anything you take . . . for someone with lyme, it is extremely important that their LLMD is first involved in discussion / decision about the full range of whatever you take. It's absolutely vital for many reasons.
Looking at your posting history, it appears that you do have a LLMD. They should be the one to guide you as to if you need to see any other specialists or not -- and, if so, they can best suggest the specific ones to go to who might be more knowledgeable about what lyme does to a body.
As for the MRI, I hope bluelyme has put your mind at ease and I hope you can find out more this week -- and also still manage to keep your canoe steady in the water, so to speak.
No matter what questions, possibilities or "facts" (that may or may not hold true in the future) . . . you are still who you are and there is always time to just shift your gaze a bit to something of beauty. Beauty - in many forms - exists alongside of reality. It helps.
Well, really, beauty is ALSO reality. It's often the reality we don't see when other "realities" capture our attention. Just shift focus. Breathe.
Good luck as you learn more. And be sure your LLMD is the top guide in how you proceed. -
[ 05-30-2016, 06:25 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I'm so spacy I forget my spaces ,as above, SORRY Posts: 66 | From Colorado | Registered: May 2016
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Hmm sounds like neuro doc will take your money to tell you he either wants to tinker with noggin or script meds that may or may not help or do more harm (not hippocratic oath) ok
Ok the 1.3 cm hemmorage doesnt sounf good but ask why and how and what to do about it ...blood vessels break when endothelial lining become comprimised and what infection (s) would likely cause that ..? Cpn bartonella borrelia ...
so if he says cauterize or exploratory or radioacrive dye pet scan to get a better view then what ? Praying for you wisdom and discernment from these butchers ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
posted
that's the way I feel right now . It was so difficult to get the appointment right. I almost felt like in a third world going to second,country . They did the MRA.
I WASVTOLD THAT MEANT MRI W ,CONTRAST, SO THAT WAS WHY MY APPOINTMENT WAS MOVED THREE TIMES.
I GET THERE AND WAS TOLD NO CONTRAST TODAY THAT IT WAS AN MRA WITH OUT IT AND THATS WHATTHE READING MD. WANTED .
Posts: 66 | From Colorado | Registered: May 2016
| IP: Logged |
posted
WOW BLUE I STARTED ALL THIS BECAUSE I HAD A PHYSICAL EVENT A MONTH AGO. DIZZY, BABBLE, WAS TOLD SOME FOAM AT MOUTH, TODAY HUSBAND SAID THAT NEVER HAPPENED. BUT TEN YEARS SICK AND OVER FIVE 95%homebound.
We've seen some major herxs here. plus lack of movement, I thought lymph glands were backed up. Please don't say bath with epsons . I haven't had a bath for years and a shower for weeks. Not safe to do by myself , nor can I keep my arms up long enoughto wash hair.
I do have a chlorine filter on shower hose and a cair that buckls if I shift wrong. you'd think after 30 plus doctor's I could get help with the shower thing, any time adoctor tries and only two bothered, they said three was the limit and twice I was to sick to move or keep awake for them.
That is something happening lately I fall asleep with sweats in afternoon. that started after the little bit of change in fight happened.
I don't know if it because I try to do more, but can't excersize yet. I get somekind of ache in my muscle that feels chemically induced.
Posts: 66 | From Colorado | Registered: May 2016
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Is your hubby helping is he on the level? Have you had any diagnosis or treatment thus far? Sounds like quality of life is pretty bad ..
.are you willing to self treat if you cannot afford llmd? Regular docs will not be if much good except fir diagnostics...i did get some abx at first with the good ol h.pylori bit but that inly a few weeks worth...
There is many ways to treat .i am praying still for you ..send a message if you need a llmd name or ideas or just to vent..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
posted
I have LLMD. That's what I meant above, doesn't have time for any of this.
I saw neurological doctor, He was very sedate, no emotion, I appologized for talking fast and giving a big back ground .
He said no problem that he was running late , anyway. He was very late for mine.
Well I guess information was a problem it's almost the first thing he wrote on his write up of appointment.
age, female presents complex history..I had to redirect her a few times as she went off on tangents about being ill for several years with cronic infection.
Being debilitating along with chronic pain . States sick for long time and talked of being on couch for severalweeks.
Well, NOW I DO FEEL LIKE A TOTAL TERD.
My blood pressure was very high yesterday and today . She States blood pressure is up and down depending on pain levels and howILL SHE FEELS AT THE TIME.
States I was in wheelchair so Rhomberg test was not done . I never said I couldn't get out of chair, only walking very far has me bent over in pain, looking at side walk.
He tolded me that I had a slight stroke at some time and a small vessel bleed, On a scale of 1 to ten, for somebody my age was a high nine. No ajor issue ,but to keep a watch on things. ALSO A herniated disk, pinching nerve at 4-5 vertebra. She needs to be on a lipid lower agent because of suspected ischemic stroke.
Does That mean Chanell blockers are not ok?
Posts: 66 | From Colorado | Registered: May 2016
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The waiting is the hardest. The inability of doctors you've waited to see to ease your mind and pain is also a problem.
Praying for some peace of mind and comfort to come to you. Please let us know how you are doing.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[bonk]](graemlins/bonk.gif)
Printer-friendly view of this topic