Tag Archives: Neurologist

MS and Anger: “Falling the Fuck Apart”!

So you wanna know about “anger issues” when dealing with Relapsing Remitting Multiple Sclerosis? This question caused me to go back into my blog post’s and find this post. I knew I MUST have written about it SOMEwhere. I did…and it’s a joke. “To Not Unravel”, clearly, it was early on in my blogging and I hadn’t come to terms yet with how “politically correct” to be. Well, I’m over THAT! How bout ” Falling the Fuck Apart”.

First Christmas as a new Mom, Ho, Ho, Ho.

First Christmas as a new Mom, Ho, Ho, Ho.

When first diagnosed I was cool, but about four years into it, I became a beast. As my husband would say, “A PitViper”. I was unbearable…even to myself. I had no idea it was my MS. I thought I was just exhausted (I now know, THAT WAS MY MS) I had two small children though, and I thought it was just life, not MS. That was until one day I noticed my brain was boiling. I sat down on a footstool in the kitchen and called my sister-in-law, the nurse. (What the hell was I thinking; I should’ve had my Neurologist on speed-dial) She told me to eat some bread and take some ibuprofen. I did that and went into a quiet room to meditate. The boiling feeling stopped.

Now that I’m twenty years into it, I realize “Hindsight truly is 20/20”! That wasn’t the first time I had noticed the “boiling” sensation and I NEVER mentioned it to my Neurologist but, I did recognize that this problem was:

  1. Physiological
  2. In my brain (where I now understand much more about the presence of lesions)
  3. Something that I could stop, with the right tools, knowledge, and sometimes drugs.

The doctor that I DID go to about this was my Psychologist. Yes, it was MS related. Although I didn’t know that at the time, what I did know was that I had to have someone to talk to about it. That someone had to have enough skill (and sense) to know that, I wasn’t crazy. She listened (once a week) and then threw me headfirst into “Mindfulness Meditation”. That is what saved me.

Is this the face of a beast?

Is this the face of a PitViper?

I started with the book “Full Catastrophe Living” by John Kabat Zinn.

JUST DO IT, and remember these things:

  1. Regardless of what anyone else thinks, you are not a bitch (or bastard)
  2. You are still be a good mom, dad, daughter , sister, or brother.
  3. The MOST important thing in MS is that you’ve GOT to take care of yourself…”By Any Means Necessary”.

 COMMENTS:

Have you experienced anger issues with MS or any other Illness?

Have you come to manage it, and if so…how?

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Filed under Mental Well-Being, Stress Management, Uncategorized

MS, this is NOT a good time!

Photo Credit: Will Sterling http://www.sterlingpics.net/artist.php

Photo Credit: Will Sterling
http://www.sterlingpics.net/artist.php

This is a conversation I’m having with my former high school student. She graduated in 1996…that makes her 31 years old now. Geez!!

Bambi: Mrs. Smith!!! I have a question about MS. As you have probably noticed, I’m a hypochondriac. I’ve been having some leg spasms for the last yr, twitching in my jaw and recently, vibrations in my stomach. I googled my symptoms and webMD said it’s possible signs of MS. I FREAKED OUT! Am I overreacting? ( which I tend to do) Can u give me some insight? I’ve already scheduled a full physical…

Mrs. Smith: Slo ya roll, Timon! Wait for Pumba! In other words, stay outta WebMD. Yes I want you to do research, but wait until the real MD.s suggest something. What you’ve been experiencing COULD be neurological in nature, but they could also be spasms due to magnesium and/or potassium deficiency or simply dehydration. Twitching due to stress, you DID just get married MISSY. The point is, EVERYthing that MS causes, could be caused by a million other things. I’m glad you’ve got a physical scheduled. What kind of doctor is it?Take VERY good notes on what’s been happening into your doctors visit. Ask for explanations and let me know how it goes.Meanwhile, your assignment is meditation. Start with 3 minutes a day, increase the minutes. Work your way up to 30 and get back to me.

Bambi: Mediate??? For 3 mins??? Ok, so how do I do that? I can never seem to stop my brain from racing…unless I have a shot… #djm. I’m speaking against it today!! But I always worry about my health. My family has horrible medical history and I’m always freaking out. Theresa and Q. can attest to that.

Mrs. Smith: Hey Honey,  my doctor has me taking vitamin D3. Many ppl are Vit. D. deficient. It’s been discovered that higher levels of D3, lesson attacks in ppl with MS, and has SOME protection for those thought to be at risk for the disease. Lil.E. scared us with a neurological episode (false alarm) but her neurologist still wants her to take a Vit. D supplement daily of 1000 i.u. I take 2000 I.U. daily. Here’s where you come in. Vit. D. is naturally healthy for the nervous system, so why not? 1000 i.u. a day. It’s also good for strong bones, so there’s a double benefit. BUT, don’t over do it. Too much of anything is not good. As far as the meditation goes, I KNOW you Timon, and “wired for sound” is an understatement (LOL) YES Missy, meditate. You’ll be a better wife, mom, daughter, friend, and SELF. I mean it! It’s not hard and it’ll help stop your brain from racing. Although your racing brain was an asset in class. Check out my post on meditation to get started.

“How to Meditate in a Moment”

Learn more about : Vitamin D and MS

ps. Remember the day you and Pumba hid under my desk only to jump out, scare the crap out of me, and break into this routine. I couldn’t teach, for laughing 🙂 Great diversion!

COMMENTS:

Have you experienced any MS-like symptoms that were actually caused by something else?

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Filed under MS and Marriage, MS and Vitamin D deficiency, Uncategorized

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

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

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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

New MS Drug –Aubagio…I’ll have to wait even longer!

The Wicked Wizard (Neurologist) of the East (Philadelphia) Instructed his army of flying monkeys to kidnap me and take away my Aubagio dreams…he told me NO AUBAGIO!

Wicked Wizard: “I don’t care what the wizard of Chicago told you, I will wait a YEAR before I prescribe this new MS drug. If you insist, let the Chicago Wizard give it to you! I will not argue.”

Me: (steaming) “I have been taking these shots for TWENTY YEARS, (in my head-you *#@%^) and Aubagio has successfully been used on HUMANS for the last THIRTY YEARS for rheumatoid arthritis, meaning it’s been watched for THIRTY YEARS ALREADY, what more do you want!?”

Wicked Wizard: “I will not argue.”

Flying Monkey: (Associate Doctor, Both hands on chest referring to self) “You know WEeee are the MS specialist.”

Me: “I will not argue either, but I will wait for an explanation that I understand.”

Wizard: “For 30 years they saw how this medicine affected the joints in people, NOT how it affected their brain, and MS affects the brain.”

Me: (still angry) “Deaths are not an issue, right? So, what’s the problem?”

Wizard: “The Blood Brain Barrier! That is the problem!”

Now, the nice little Monkeys make it their business to try to explain to me the Blood, Brain, Barrier. The Wizard, gruffly asks if some internet information would suffice? By now, my eyes have glazed over with all of the medical jargon, but buried underneath all those words I’m still alive. Deep within my brain, I have heard this term. Either, I have taught it, or learned it, but at some point it has been in my academic life! That tiny, tiny sliver of light allows me to laugh at the Wicked Wizard as he and his Flying Monkeys leave the room. I WILL SURVIVE(Donna Summers) I’ll Research the Blood Brain Barrier!

Has anyone else been turned down by their Dr. for Aubagio? How do you feel about it?

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