Tag Archives: MRI

I want an MRI :/

 

I see my Neurologist today and I’m actually going to ask for an MRI.Fotosearch_k2478801 I’ve been on Tecfidera for quite awhile now and I’d like a comparison picture, a before and after if you will. I’m sure I had one just before I started the new drug. We’ll see what they say.
It’s time now to make that list, the one of symptoms since my last visit. I always seem to forget at least one while I’m there. Because I try to focus on the positive, “in my mind” I make small of issues when they’ve gone away. I’m learning to not “blow them off”. Who knows, maybe they can tell me something helpful. Like how to avoid that wall even when I see it coming!

What helps me to get through an MRI is definitely MEDITATION. If you haven’t tried it already…you should!

COMMENTS: What helps you get through an MRI?

2 Comments

Filed under MS and Disease Modifying Drugs, MS and Oral Medication, Neurology, Stress Management

MS: Like Mother like Daughter

Like Mother like Daughter

Like Mother like Daughter

Oh God NO…say it ain’t so!

We’re going to a neurologist today for my daughter to be seen. I thought I was okay, but I’m not. My stomach is upset and I’m on the edge of imploding. I’m falling apart just writing this. I’m trying so hard not to.  I know if I do, I won’t be able to stop…ever. I’ll be in pieces (or puddles) when she needs me NOT to be.

Because of an episode of what could have been optic neuritis, she needs an MRI and blood work. I allow myself to hit a “low”. It’s okay for me to do this, I deserve it. I just need to be careful not to let anyone in my family see me there. I really hate what this disease is doing to my family and I hate that I brought it here. If I didn’t have this disease we wouldn’t have even considered it. We wouldn’t know what MS was. We would just assume her temporary loss of vision was a migraine, or maybe a concussion that resulted from a soccer play.

What don't you understand about...NO!

What don’t you understand about…NO!

What do I do?  The only thing I can. When MS is the hammer, everything is a nail.The Nail That Sticks Out the Most

Okay, I cannot stay here! It’s time to change the recorded message in my head, before it becomes permanent. If I’m gonna talk the talk, it’s time to walk the walk. I’ve advised young couples dealing with MS who are concerned about genetics that:

1. More than 80% of people with MS DO NOT have a first degree relative (parent or sibling).

2. Scientists now believe that a person is susceptible to multiple sclerosis only if they inherit an unlucky combination of numerous genes.

3. Risk for MS is also affected in part by a person’s ethnic background and other factors such as something environmental or a virus. A “perfect storm” has to occur for a person to develop MS. Several of the believed causes must intersect in a person. It is not known what those combinations might be. As a matter of fact, it is known to be not just one specific combination.

4.If caught early, and the young person has access to one of the disease modifying drugs, the nervous system might possibly be preserved until a cure is discovered. I believe that is right around the corner.

To make a long post, short, Dad and I took her back for the MRI review. We had to wait almost an hour for our Neurologist to show up, I was a nervous wreck. She walks into the exam room and my only thought is, “Oh God NO…say it ain’t so!” Then the Doctor says to our daughter…” You have a beautiful brain”.  I burst into tears 🙂

Thank you God!

Thank you God!

Thoughts and Comments: Does anyone in your family have MS?

Are you a parent? Do you worry that your children will also have MS?

Do you NOT have children because you worry about them having MS?

References:

National MS Society on Genetics

National MS Society on Disease Modifying Medications (PDF)

Mayo Clinic on Optic Neuritis

 

15 Comments

Filed under MS and Family, MS and Genetics

Monsters, INC.

There are monsters in my closet, waiting to emerge.

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“You’ve got active lesions in your brain”. That’s what my neurologist said to me as we looked at my brain MRI. My response: “So what…that means nothing, you’ve probably got’em in your brain too. Have you ever looked?”

I learned a long time ago that MS symptoms and lesions didn’t necessarily go hand in hand. You could have symptoms with no lesions, or lesions with no symptoms. You could have many lesions with very mild symptoms, or a few lesions with lots of symptoms.  So…I think the “monster in my closet” approach is one way that doctors try to scare new patients into taking these disease modifying drugs(DMD).

Don’t get me wrong; I love the drugs! I’ve been on them since they were first approved by the FDA. I believe they are ONE of the reasons that in the twenty years that I’ve had RRMS, I have not progressed to SPMS. Statistically 50% of all patients 10 years into the disease, do progress from RRMS to SPMS. I wonder if that statistic was calculated before the development of the first disease modifying drug in 1994. If so, I would expect that statistic to be even better for patients diagnosed after 1994 who have had the benefit of these drugs.

The good news is active lesions along with symptoms, means that I’ve NOT progressed into SPMS. If I were symptomatic, with NO active lesions this far into the disease, that would be indication that I had moved from RRMS into SPMS. So, YAY for my active lesions! This also says to me, this relapse will end (remit).

The moral of this story is…make no decision out of fear. I will choose a new DMD very soon; not because there are monsters in my closet waiting to emerge, but, because I believe these drugs have had a positive effect on the course of my disease.

IT’S NOTHING PERSONAL; IT’S JUST THEIR JOB.

Thoughts and Comments:

Have you decided to use any of the DMD’s?

If so,do you feel that they have helped at all?

ps. I’d love for you to join me on Facebook: https://www.facebook.com/pages/MS-Open-Mic/579107032117769?fref=ts

and Twitter: https://twitter.com/EstizerSmith

10 Comments

Filed under MS Drugs, Neurology

My dear friend has been diagnosed with MS…ALMOST!

MeandDawn

Dawn: Hi Estizer! I’ve been thinking a lot about you lately. I’ve had some mysterious health issues over the last few years and my neurologist called yesterday to say that my spinal tap MS panel was positive. This is very new & scary for me so very few people know. I just had to tell someone and I knew you were the right person to hear it. Thanks for listening! ~Dawn 5:15pm

Estizer: Dawn!! you’re absolutely right,I AM the right person!! All I can say right now is, relax! It’s a scary thought, but RELAX. We can meet whenever and wherever you want. It’s gonna be fine.

 3:17pm-Dawn: The doctors still aren’t positive what I have! I had white matter changes on my (great video here) Brain MRI, a spinal tap that was positive for inflammation in the ms panel, but then I just got a normal result on a Cervical Spine MRI. This is so frustrating! I just want a diagnosis so I can move forward with whatever I have.

5:31pm Estizer: I know THAT feeling! What does “changes in the white matter” mean? Did you have lesions or not? mri-multiple-sclerosis-lesionsDid they show you? What have your MS symptoms been Dawn? This is probably the LEAST important question because there could be a million and one symptoms, and they ALL mimic some other illness as well. Have you had more than one weird episode? My leg originally acted crazy, but then it stopped. The NEXT year, it came back in both legs. Hence, the TWO separate weird things.

5:43pm Dawn: My Brain MRI was odd. Fluffy white patches that even baffled my neurologist. Not your typical lesion appearance I guess. Then he ordered the (great video here) Spinal Tap. My symptoms are odd too. It started with an episode of brain fog, fatigue, & low-grade temps 3 1/2 years ago. The afternoon fatigue & fevers have NOT gone away. A year & a half ago I started with a roaring sound in one ear and that’s what led to the Brain MRI since my ears turned out normal. In addition to this I have mild tingling in my legs & hands and definite muscle weakness in my hands.

5:48pm Estizer: I remember this test where I had to watch this TV screen that had black and white checks on it, while I had these “probes” on my head. Not at all painful. Did you do that one? That one for me was one of the tests that also indicated MS.Was your most recent MRI, a year and a half ago?

5:56pm Dawn:I am scheduled to take that visual test next week. Its called a Visual Evoked Response. My Brain MRI was in November. The Cervical Spine MRI just 2 days ago. I spent most of those years going to my family doctor who had no idea what was wrong with me. She sent me to an infectious disease doctor and urologist (because of frequent bladder infections). She also treated me with several different kinds of nose spray & antihistamines for my ear problems. I finally said enough with her and sent myself to an ENT. I can thank him for figuring out that my problem is neurological. Needless to say, I will need to find a new family doctor eventually. Did you ever have a Spinal tap?

6:03pm Estizer: HAHAHA, on the family Doc, and yes, on the Spinal Tap. It was one of my confirming tests. Too many white blood cells if I remember correctly. Sign of inflammation. I went thru a couple of unaware Docs too. When I was diagnosed though, happy to say, they had JUST recognized that MRI’s were a powerful indicator, or it would have taken much longer to catch. Be patient Dawn(yeah right!).

6:20pm Estizer: When they finally diagnosed me; I was relieved to KNOW as well. Big for me…it definitely was NOT a brain tumor, and it was NOT cancer. Those were my biggest fears. I guess I figured, as long as they came back with something that wasn’t terminal…I would be fine. Oh yeah, or make me lose my baby. I was pregnant with Lil. E. When they said MS, my two questions where; will it harm my baby and is it genetic? Will I give it to her? I liked the answers.

7:01pm Dawn:Thanks again for chatting! So many questions, like…Is it possible to have a normal spinal MRI and still have ms?

7:50pm Estizer: Gee Dawn, I’ve never had a Spinal MRI, just brain: / Sorry, I was away from the computer cause I took an emergency nap(LOL), MS fatigue.

8:09pm Dawn: I LOVE emergency naps! :)) Thank goodness they love me at work & give me time off when possible. I also have nice hours (7:30-3:30) which is when I’m at my peak performance. Working full-time is kicking my butt!

11:26pm Estizer: Yeah Dawn, but I miss working SOOO much. I miss the energy that I got from my kids but, MOST I miss the money; especially lately. I often think…I had to come out of the classroom TEN years ago. I won’t contribute to my household for what, FORTY YEARS? With all of the new medicines now, I’m beginning to wonder, how can I use some of them to make some changes? Seeing my “new” neurologist on Monday. Meanwhile, I suggest you do less at home. Teach the boys to cook. Make it fun. Tell them that they get one day each, per week. They need to decide the menu and put the stuff they’ll need on the grocery list. They can cook WHATEVER they want, as long as it’s healthy…whatever you think that means. 

9:18am Estizer: Hey!! How’d Sherry’s senior portraits come out??

6:24pm Dawn: I do love my job so I will hang onto it as long as I can. But I am in bed by 8:00 just about every night since I give ALL of my energy to my job. Sherry’s senior portraits were pretty nice. Not nearly as nice as what you got of her at Lock Ridge but a nice shot of her in each of her sports uniforms. I bought a collage so it’s a nice memento. Michael will be next. He graduates next year already!

8:51pm Estizer: Dawn, if this type is RRMS…it can be managed, and you will feel better. Hang in there and be patient with yourself.

Comments: What was your initial experience?

Are you in the process of being diagnosed now?

Have any new test been used?

 

4 Comments

Filed under Diagnosing MS

I’m a Neurologists Nightmare!

For 10 years now, I’ve seen two Neurologists; one in the mid-west, one on the east coast. The Neurologists near me just don’t know as much about MS. Here’s the problem: both of my current Neurologists are at major teaching hospitals, and both are heads of Neurology at those hospitals. I am nowhere near a teaching hospital where I live now. This takes me from the expertise of an “Academic MS Specialist” who see’s thousands of MS patients; to a “Non-Academic MS Specialist” who see’s only hundred’s. Which one would you rather have?

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I want my Neurologist to respect everything that I bring to the table. Be able and willing to explain everything so that I understand it, and then…back the hell up! Give me the time and space to do my own research, considering my options.

Maybe I’m a bit of a nightmare, but I’ve got a GREAT personality!

On my first visit to see my “new” Neurologist, I thought he was nice enough, friendly even; that’s a plus. Middle aged, and, this means I could have him for years. The down side of having Academic Specialist is that they are usually on the downside of their career. My mid-west Neurologist has been practicing medicine for 50 years! About half way through our interview, I mean… conversation; when things were going well, I ask the new guy, “Are you married, do you have children? How many? Do you live in the area?”

Hold on Buddy, keep your pants on! My husband’s in the room! I explained quickly that I’m not being fresh. I want to know these things because I need to know if you’re vested in this hospital, this area, and this life before I commit to you. I’ve been with one Neurologist for 10 years and the other for 15. THEY are not going anywhere; are you? His answers to all of my questions were satisfactory and now it gets sexy. They all want to get you naked as soon as they can. That’s our brain of course, so I agreed to the obligatory MRI.  I probably should have been more coy; you know, played hard to get. The problem is, when you’ve been doing this as long as I have, you lose all inhibition.

I listened to his “elevator spiel” on all the new medicines, and even said I would take one. I was looking at the floor, shaking my head NO, while my mouth was saying, “Yes”. He looked at my husband and said, “She’s a real handful…huh?” WHAT! Because I’m not jumping into bed with you? The medicine I had agreed to take was Ampyra; the walking pill. Ampyra is the only medication to date indicated as a treatment to improve walking in patients with MS. It arrived and sat on the kitchen counter for weeks. Like sex…he still had to wait until I was ready.  I was scheduled to see him in three months with a report. To my surprise, he called beforehand. He wanted to talk about my MRI, and how the new medicine was going. “Um…it’s not”, I say.

What I needed, I had gotten. A little space, and time to consider my options. A phone call and a little more coaxing at this point were perfect. It was like getting a box of chocolates! My other Neurologist never gave me chocolates.

After waiting a couple more weeks, I gave in and took the pill.

I can be a nightmare; but I’ve got a great personality!

Your Thoughts:

Have you ever felt like you knew more than your Neurologist?

Have you had a Neurologist tell you something about MS that you simply KNOW to not be true?

4 Comments

Filed under MS and Oral Medication, MS Drugs, Neurology

“WAIT!! Can I talk?”…my MRI

Fotosearch_k2478801

I’m on the table, all strapped down and the conversation goes:

Nurse: “What kind of music would you like to listen to?”

Me:“None, I’m okay.”

As they begin to roll me in I say

Me: “WAIT!! Can I talk while I’m in here?”

Nurse: “Whaaat?”

Me: “I have to rehearse my script!”

Nurse (puzzled): “Only if you’re talking to us, and that’s when we ask you something.” Walks away with a huff!

So FINE! I say my script to myself, but I’m sure when I got to the part where I, snap my head and put my hand on my hip…the MRI picture of my brain will be a liiiitle bit fuzzy :/

I’ve had so many MRI’s of my brain I just go to sleep, but not today! The play is in just 3 days.

Oh, the MRI? Not a big deal. I’ve seen a “new” neurologist, and of course he wants new pictures. I haven’t decided to give him the job yet. He’s still in the probationary stage, but he’s got potential. He’s pushing all new meds. THAT takes me some time to research and consider, so, he’ll just have to be patient. Right now…I’ve got a PLAY TO DO!!

CLICK HERE for the MUST SEE Video: Understanding your MRI

How many MRI’s have you had?

Were you diagnosed without an MRI?

COMMENTS:I’d love to know your thoughts.

2 Comments

Filed under Diagnosing MS, MS Drugs