Posts Tagged With: Neurologist

I can LIVE. I can FUNCTION. I can DO.

Posted on November 5, 2012 by Nahleen

A week ago today I was in the ER TRYING to get some answers about why I felt digestively HORRIBLE!

TODAY: I feel sooooooo much better!

AMAZING!  I am truly grateful.  It means so much to me to be feeling better.  Sure, I keep waiting for the other shoe to drop (you know, that infamous shoe that is always hovering and just waiting with baited breath to drop) but it hasn’t happened yet.

I definitely still have recovering to do BUT I can eat.  I can LIVE.  I can FUNCTION.  I can DO.

ACTUALLY:

Despite the absolutely miserable week I had last week until about Friday, I have received 3 VERY GOOD PIECES OF HEALTH NEWS that I feel I MUST pass on to you.

1. I heard from my Rheumatologist that all of my bloodwork came back really great and stable and that she firmly believes my lupus has gone into REMISSION.  It doesn’t mean I won’t have symptoms BUT it does mean that all of my organs are healthy and I am stable.  There is definitely no sign of a FLARE of any kind.  I’ll take it for as long as I can!

2. I had an appointment with my MS Specialist Neurologist today and he told me he felt like my MS was under control and that despite all of the crap I had been through in the past week (or even in the past 2 months digestively overall) that I am doing extremely well and my physical well being according to an MS standpoint is BETTER than it was in July!  He’s very happy with my progress.  Now this is with having a VERY early appointment this morning, hardly having time to shower, and rushing to eat (and thank goodness I could even do any of that–not sure how I would’ve gotten there had I felt any worse but I digress and think about things I don’t need to), and being half asleep the whole time.  WOW!  It usually takes me about 4 hours every day to really feel like maybe I can get through a day.  It’s just the way it is.

3. And now it seems that getting a 2nd opinion from a different Gastroenterologist paid off for me.  It’s all about new input and different experiences.  My 1st Gastroenterologist has been really integral in getting my health where it was until about a few months ago.  I do believe it’s time for a change.  This new guy might just be my choice.  He saw things a bit differently, approached it on a different path and convinced me to JUST TRY (he really emphasized that because I was so against more medications) this new medication treatment and see what I thought.  If it didn’t work, then he’d try something else.  Come to find out, my Primary Care Physician’s newer Physician Assistant knew of this specific specialist and was pleased to hear I was seeing him.  She said her experience is that he is VERY GOOD and an expert with what I’m dealing with.  Well OK then.  Guess it was the right choice.

4. BONUS: I just had to add this because my goodness, I just brought up all these titles of medical professionals in 3 paragraphs.  I think I need to get some credit for being able to come up with their names when my head is so tired.  Phew!  Rheumatologist (and how on earth would anyone know how to spell this if they hadn’t seen it written out tons of times?), MS Specialist Neurologist (so specific), Gastroenterologist (took me forever to figure out there was an “e” there and not an “i”–not sure why there isn’t an “i” but anyway), Primary Care Physician, Physician Assistant…WHOA!  I AM TRULY GRATEFUL TO HAVE ACCESS TO SUCH TALENTED PROFESSIONALS IN THEIR FIELDS who are so proactive with my health and were completely available for me in just 1 week!  In fact, if you count my first Gastroenterologist, he was also available to me, I just didn’t agree with what he was thinking about my health situation at the time…

So all very very good things are finally happening.  It is about time.  I’m going to cherish them as long as I can because as we all know, everything can change in an instant.  Now about cures…  You know, I stopped expecting cures for anything I’m going through a long time ago.  I’m really just looking for relief and to feel better with a much more improved quality of life.  Waiting for a cure would make me STOP living and I am doing everything I can to LIVE.

IT IS ONE HARD JOB TO LIVE BUT I’M DETERMINED TO DO IT!!

P.S.  I’ve been quite reflective lately about all I have been through.  I think a lot of it has to do with my 10 year MS diagnosis Anniversary coming up.  10 YEARS…I think that speaks for itself.  I feel a very personal Blog Post coming in the very near future.  Stay tuned.  Right now it’s all still processing.  It will be direct from my heart.

LOVE TO ALL!!!

*And special thoughts go out to those affected by Crazy Storm Sandy.  Wishing for peace and relief for all of you!

 

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I GOT OUT!

Posted on October 2, 2012 by Nahleen

I did I did! I got out, had lunch with a friend and I didn’t have to cancel! Yippee!!!!

Yes it was 100 degrees today and yes my MS was still upset with crazy heat fatigue, BUT other symptoms seemed to have calmed down. I was able to get up earlier and stay up, pull myself together, get out into the hot car and hot sun and make it to lunch!

The lunch was yummy at BJ’s Restaurant and Brewery (and the tables were freezing–never had that before), the conversation was fun and the friend was so easy to talk to and be with (as usual–you know who you are wink wink). It was lovely! We ate from the lunch specials and got to save some money, we dealt with an overeager and very bored waitress (who hounded us about what we were going to order and did we have any questions and and and and…she was really like that), I had a refreshing berry limeade drink thingie and then we walked around the mall right next to the restaurant. The mall was quiet and relaxed, we overwhelmed our noses with fragrant fall candles at Bath and Body Works (some crappy–I swear a whole table was set up just with crappy ones….some wonderful–I swear a whole table was set up with wonderfully accurate fragrances of fall like “leaves”), looked at shiny things, giggled about gummy bear shaped earrings (totally cute) and about how the ’80s are so back in style with fashion accessories (can you say Madonna gloves from “Like a Virgin”?) and gabbed, gabbed and gabbed.

Then sadly she had to leave. I’m not sure where the time went. I stayed at the mall and walked around some more, poking, looking and trying oh so hard not to buy anything. I was a good girl. I didn’t buy one item. It was hard. Some of the sales were really great. Then again, it was so hot I doubt I’d be able to be comfortable trying on clothes anyway so it worked out. Before I left, I sat for a bit and just took in the ambiance. I haven’t had that much fun in a mall in a long time.

It was so nice to get out, see my friend and to be able to do ANYTHING in this dang heat. Sure, I’ll need to recover now but my mind/soul are happier. And my Neurologist would be thrilled to find out that I had some fun. His orders a couple of months ago were to have more fun. OK. I did.

And now I need to make my Rheumatologist happy and get some rest.

My body will be happy with that idea too.

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You’ve Come A LONG Way

Posted on July 30, 2012 by Nahleen

Helloooooo!!!!

First of all before I forget, I want to welcome all of my new followers!  Thank you thank you thank you for joining me on this crazy journey of life with chronic illness.  It means so much!

Hope you all are starting your week off alright.  I got to start my Monday first thing with a “Fasting” appointment with my Primary Care Physician’s Physician Assistant this morning.  I tell ya.  The fun I have.

These “fasting” appointments always get me extra tense because well, who wants to go to a doctor appointment and not eat when they’re body is yelling for food?  Aren’t we told to eat 3 healthy meals a day and to be sure to eat breakfast?  Well, we can’t eat breakfast when we go to a morning “fasting” appointment now can we?  These doctors want accurate blood test readings for cholesterol and blood sugars levels and such.  Yeah, well, tell that to my body who decided to wake up this morning and be INCREDIBLY hungry!  Isn’t that always the way?

Sure I’m pleased that my body was hungry because 2 years ago at this time I was trying to teach my body how to eat and ACCEPT food again after being so severely ill I had to start on a basic diet of chicken broth and then build to applesauce and go from there.  BUT when I “fast” I can’t take my morning medications with an empty stomach so that waits too and my whole body gets screwed up.  And it was 2 years ago in June when my body started going into a huge shock of what we all believe (NOW) was part of a major lupus flare (had no idea at the time) that all started with a basic “fasting” appointment for an appointment with who was my NEW doctor at the time so he could get BASE levels of bloodwork for me.  Well, that “fasting” and then running to work and then running through the rest of the day was too much for my body to take and I became severely ill with vomiting, etc.  So of course I still take that baggage of memories with me to my appointments now.  I’m working on letting that go but it is VERY SLOW.

So anyway, back to the appointment this morning.  Sorry for the tangent.  I was able to see the original Physician Assistant who is now back in the office after being on her own Medical Leave of sorts that included Maternity Leave for what seemed like FOREVER, and it was really great to see her.  How cool is that?  It was felt really good to see a medical professional again.  I really think she is THE ONLY MEDICAL PROFESSIONAL I currently see who DOES NOT make me NERVOUS.  I put those words in caps because that is how nervous I still get around almost all medical peeps.

This woman is probably younger than me (hmm, seems to be happening A LOT lately and I’m not THAT OLD) and has been so caring, supportive, compassionate, has always listened to me, been calming, loving, has always paid attention to detail, is really smart and knowledgeable, has a great memory, and has ALWAYS made it a point to ask me so thoughtfully how I’m doing when she walks in the room and I know she means it.  What I remember most along this very slow and at times VERY DARK 2 year journey with her is how she ends each appointment with me telling me how far I’ve come and really making sure I understand that and give myself credit.  I can remember one appointment when she was telling me how happy she was that I was “feeling better” and even though I may have a long way to go to hopefully feel “good” one day, that I have come so very far and she was starting to cry.  I was pretty much in disbelief.  I almost wondered why she was crying and then I realized she was crying about me!  She REALLY connects.

So the appointment today went really well.  And wouldn’t you know my blood pressure was “normal”.  CRAZY.  It has not been normal lately ESPECIALLY when I have been to see my Rheumatologist for lupus and my Neurologist for MS.  It has been quite high.  I have known for quite a long time that I have “white coat syndrome” but this just proves it to me.  I saw the one medical professional I feel the most comfortable with and my blood pressure was normal.  I was nervous but not anxious around her.  There is a direct connection.  So now if she could be with me wherever I go that would be great.  Do you think she’d go for that?  To be my constant moral support everywhere?

To be honest, I’ve considered changing to a different Primary Care Physician than the one I’m seeing now (this lovely PA I speak of currently works in his office) because I don’t know that he’s a good fit for me anymore.  He’s not a bad doctor at all.  In fact, he has helped me immensely.  There have just been some issues that I have with his medical care that I don’t necessarily like and it may be time for a change.  However, after seeing this PA today I’m not so sure.  I see her every other appointment and I have to see him all the other times.  Is it worth it to stay with this office (really GREAT office staff!) and deal with the Doctor I don’t exactly like in order to see her half the time?  Not really sure so I guess that means it’s not the right time to make that decision yet.

Only time with tell what decision I make.  Luckily I don’t have to know that answer right now.

So just for today, I am satisfied with the appointment with a medical professional who really “gets it” who sent me on my way at the end of the appointment today with, “You’ve come a LONG way, Nahleen.  I’m very proud of you for all the work you’ve done.  You deserve to feel better.  I hope you give yourself credit for that.”–and AGAIN, I know she means it.  It’s not just part of her script.

Oh and by the way, it’s currently 6pm (Monday) and I’m doing okay.  Nothing horrible has happened because I “fasted” this morning.  Sure it messed up my body’s schedule, but thankfully my body can take it today.

 

…Guess I HAVE come a long way.

 

 

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Smartypants

Posted on July 25, 2012 by Nahleen

Guess what??

I saw my cute Neurologist today annnnddddd:

My multiple sclerosis is STABLE!

Great news!!! Turns out the lesions I have are the lesions I’ve had FOR-LIKE-EVER and they’re not active! No new ones to speak of. Just the ones that seem to have taken permanent residence on my brain–you know–for kicks and memories I guess. I won’t lie. I sure would like those old lesions to get the heck on out of my brain, BUT I’ll take what I can get.

As my doctor says, “Guess what? You have a beautiful brain!”. Hmm. Thanks…I think?

He’s also pretty darn thrilled with my physical improvement since I first met him almost 2 years ago and he gives me and the oral MS medication, Gilenya, A LOT of credit for that. As for Gilenya, there was a time earlier this year that he was worried about the reports of deaths while on it. Turns out, none of those deaths look like they are connected to Gilenya AT ALL (so sorry these people died BUT so relieved to hear it wasn’t Gilenya) and if there’s even a hint of a connection, they have nothing to do with my clinical make up and he is VERY HAPPY to keep me on it! Well OK then!!!

This Neurologist continues to be my favorite Neurologist so far which is saying A LOT since I have had crappy luck with these specialists in the past and I think he’s my 9th Neurologist in 10 years. It’s not just because he’s cute either. REALLY. No really. He’s knowledgeable, patient, compassionate, takes the time to talk to me, answers ANY and ALL of my questions, asks me about ALL of my health issues because he believes his MS patients can’t be truly healthy without taking care of the WHOLE body, his Assistant rocks it in the Assistant Department (and could give classes about how to handle Patient and Doctor demands), he responds very quickly to phone calls, he’s personable and quite humorous, pays attention to detail, he was very understanding when I had to cancel an appointment due to being sick, he’s proactive, and apparently he’s one of the top MS Specialist Experts in the country. You’d never know that from him. He doesn’t talk about that at all. I hear it from his colleagues (all the other doctors I see who work with him). Oh and did I mention he used to be a JAZZ MUSICIAN in a past life??? How crazy is that? How does that happen?–First a Jazz Musician, then a Doctor, then a Neurologist, then an MS Specialist??? When I asked him about the connection, he said, “I’m a Nerd.”

My clinical neurological tests during the exam went okay. I think I had some issues. He knows I’ve done those tests a bazillion times so he tries to trick me and ask me what I ate a week ago (not last night or this morning but a week ago). He tries to pull questions out of thin air and ask me what I don’t expect. When I answered the spelling of “orange” correctly (kinda hard to spell with your eyes closed–you should try it), he said, “OK Smartypants. Let’s see what else you can do”–and after he had me do a few more tests he told me to spell “orange” backwards…and then giggled about it. Yeah ha ha. Thank goodness I’ve always been a good speller and visualizer. Now you try spelling orange backwards with your eyes closed. HARD RIGHT????

So that’s that. My MS is probably just acting up because it wants to and because it’s been hotter. AND it takes nothing for me to get hotter when it’s extra sunny. And wouldn’t you know, he says I have a case of the “Double Whammy”…hmm…sensing a theme here. Isn’t that what my Rheumatologist said about lupus and MS last week???

So to end the appointment, he told me to “stop being so hard on myself.” He pointed out that I have multiple sclerosis AND lupus. Enough said I guess. I don’t know why that can’t stick with me more and I can’t accept that as ENOUGH.

Guess I just want to live a “normal” life WITHOUT multiple sclerosis and lupus.

BUT since that doesn’t seem to be in my near future (an obliteration of any disease at this point), I’ll continue to practice this “RESTING” thing that is all the Rage with doctors these days and TRY to be gentler with myself.

I’LL TRY.

Categories: Appointments | Tags: , , , , , , , , | 4 Comments

Diagnosis Part 4: “9 Times Out of 10″

Posted on May 17, 2012 by Nahleen

In October of 2002 I’m guessing I was out of my mind.  I must’ve been.  What was I thinking?  I was working a full time job, I had just finished working as a Production Assistant on a “B” movie that I never heard about again, I was still working out and eating really healthy and then I decided that I needed to get a second job because I just wasn’t making enough money.  Hey, I was 25 and I was invincible right?

Wrong.

It was October in Los Angeles, CA so I’m guessing it was quite hot.  It usually is at that time of year.  I wouldn’t have known because I was too busy running around.  I worked full time at my day job in television which had its own stress.  I walked every day during lunch and worked out at least three times a week.  I ate well and I had lost almost 50 pounds.  My second job consisted of working in a linen store and running around lugging big bed spreads and other bed linens up tall ladders and dealing with customers.  Things were going well…I thought.  Yeah sure it was a bit hard on me but it would be on anybody.  I could do it.

Somewhere along the way as my feet continued to tingle on the bottom, I started feeling that dreaded tingling symptom travel up my left leg.  Then it traveled to my left arm.  Then my left hand.  I denied it.  I ignored it.  It couldn’t be happening.  An echo of a memory of my Primary Care Doctor’s voice rang in my head from months before, “Is the tingling going anywhere else up your leg or in your arm?” and I told him no and asked him why to which he replied, “Oh no reason.  It could just be more serious if it ever happens”…”ever happens”…”ever happens”.  Those two words rang in my head but I pushed them away.

Did you know it’s really hard to push that tingling symptom away when it doesn’t go away?  I waited two weeks until the tingling sensation then jumped from my left hand to my right hand and then I admitted it to me and somehow told Corey about it.  I wanted to be in denial.  I wanted to believe it wasn’t happening.  If I didn’t talk about it it would go away.

So somehow I got over myself and called my Rheumatologist to make an appointment.  I sat in that exam room and I told her about these new symptoms.  She looked at me long and hard and kept her facial expressions very still.  Then she said she wanted to order an MRI for me.  I freaked out.  An MRI?!  BUT it’s just tingling.  That’s all.  MRIs are to check for serious things.  I only had tingling.  That was all I had been told by how many doctors till then?  Somehow I got out the words and I asked her, “Why an MRI?” and she beat around the bush a bit and said, “Well your symptoms could be indicative of many things.  9 times out of 10 it’s not MS but it’s always good to check just in case.”  And she also made some comments about the lack of attention from my previous Neurologists and how she couldn’t believe I hadn’t had an MRI before then but that she’d get it taken care of.

MS????  What did it even stand for?  I didn’t know it stood for multiple sclerosis.  Why would I know that?  It’s not like we learn about all of the diseases out there during our normal lives.  What was that?  It sounded awfully serious.  All I could picture was those poor celebrities we had seen in the limelight who were in wheelchairs, if anything.  Then again, why would it be MS?  I hadn’t been diagnosed with anything else so there was no need to jump to any conclusions now.

So how did she calm me down?  Well she talked to me about her health problems and how she had just had to have an MRI herself and she told me the tricks of where to put my hands and how not to feel too claustrophobic and what to do when I was in the tube, etc.  She tried to show me how she could relate and some of what she said still sticks with me now when I have to have follow-up MRIs as part of my multiple sclerosis healthcare plan.

You know I somehow knew I had MS.  I don’t know how or why but something about it clicked for me.  I spent a lot of time contemplating it and talking about it with Corey while I waited for my HMO to go through the horrible rigamarole that was “necessary” to get me approved to have an MRI.  I had to wait at least a few weeks to be able to schedule my MRI let alone have one.

And you know all of this didn’t stop me from keeping up with my crazy full schedule.  To me I had no reason to slow down and stop.  Not yet anyway…

 

The next Blog will be about my 1st MRI experience.  It was a truly traumatizing and life changing experience for me that deserves it’s own Blog entry.

 

Thank you for reading my story.  It is so very hard to write but so necessary to express and share.

Categories: Diagnosis | Tags: , , , , , , , , , , , , , | 2 Comments

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