I've had my head in the sand w/ MS! Lots of questions

[jenni209]

Hello, I'm a long time stalker. I have just recently accepted the fact that I have MS. Actually I am still working on accepting it, but I am getting there. I was dx about 15 yrs ago. I took the drugs, told the neuro "yea, yea yea. I'm fine." I told anyone that found out (not a secret) "yes, but I am fine."
I haven't been fine for about a year now. A lot of things are just going south, mainly the weakness and pain in my legs, and balance are the main issues.
A few of my questions are regarding your neuro's. I am in the process of switching and I have no idea what is normal behavior with the neuro.

Does your neuro go aver the MRI's with you or does he just tell you what it said?
Does he explain what things like spasticity are or does he just say here is a rx for that. I've never been told why my legs hurt so freaking bad!

I thought in the past that I'd have good days and bad days. Can I start with a good day and change mid-day to a bad day (meaning balance and pain).

I felt like a Million bucks today, so I decided to take the pooch on a short walk, I consciencely walked very slow, cut my walk by a quarter as I haven't been for a while. I couldn't walk half of what I was planning on. I was near tears and a panic attack when I got home. I was not expecting that to happen. I felt freakin' great at the start of walk.
I just started counseling this week, I start physical therapy in a couple of weeks to learn how to use a cane and I am going to see a new neurologist. I've come along way in this, but today walk really freaked me out. I have a whole bunch of other questions, but that panic attack was my second one ever and my first ever lorazepam is kicking it. I gotta go lay down. I'm tired.

[Mamabug]

For the first six years of my MS, I saw a general neurologist. For the last six years, I see an MS Specialist.

Both doctors showed me my MRI's and both doctors discussed them with me.

My neurologist did seven MRI's. He chose to do all seven for diagnostic purposes. The seventh MRI, done approximately two years after the first, finally "looked enough like MS" that he was able to put a label on what was going on with me.

My MS specialist has done 3 MRI's. She did the first one, to confirm that MS was an accurate dx. The last two, to do a 5-year check on how things are progressing.

You sound somewhat frustrated with your neurologist. I encourage you to write out your frustrations, and bring the list to your next appointment. It would be good to share with you doc what you are looking for, and how it might be able to help you to manage your MS and your emotions.

I also hope that the counselling and the PT will be useful and helpful for you.

Please keep us update on how things go for you, okay, hun?

[Kimba22]

Hi Jenni209.

Welcome to MSWorld! We're glad you joined us, but sorry why you are here. I hope you find this site both informative and supportive. I'm sorry your symptoms have been getting worse. Over time, old damage will finally manifest itself so we can finally see it. I'm also sorry about your panic attack today.

I've had quite a few different neurologists over the years. I don't really remember who told me what (or how much), and there were only a few that took much time to really explain anything. The one who dx'd me was pretty good (but moved too far away), one of my past MS Specialist's (also moved), and the MS Specialist I now have will usually take some time to explain things.

I went to one neurologist who told me MS didn't cause pain (even though he knew I had spasticity), said it was because I was depressed. Well, yeah, being in constant pain is depressing! I tried the antidepressants he prescribed and even saw the psychologist he referred me to. Anything to see if it would help. Didn't. So finally moved on to a new neuro, who finally knew what it was from.

My current neurologist (who's also MS Specialist at a large MS clinic) doesn't go over my MRI with me, just tells me what they say (although I usually have an idea already from the MRI report I get beforehand). But, he has mentioned where my lesions are located. I also wouldn't say any of my former neurologist went over them in any great detail, either. But, I do remember my first neuro pointing out my lesions when I was diagnosed.

I also don't really remember how much about spasticity any of my neurologists told me. But, it was a former MS Specialist who sent me to a Doctor of Physical Medicine who was a Spasticity Specialist. He explained it the most and got me on the right treatment, since the oral medications weren't helping enough - a baclofen pump.

In all honesty, most of what I've learned about MS, I've learned here. Not necessarily from any of my neurologists. The appointments are just too short.

And yes, you can start with a good day and have it change to a bad one. (But, I've also had the opposite happen). I'm sorry today was one of them for you.

I also don't know if this happened on your walk, but there's also something known as muscle fatigue, where weakness increases during a repetitive action, such as walking.

Here's a few links for you:

http://www.nationalmssociety.org/Sym...oms/Spasticity

http://www.nationalmssociety.org/Sym...-Symptoms/Pain

http://www.nationalmssociety.org/Sym...e-Coordination

http://www.nationalmssociety.org/Res...e-Your-Balance

Good luck with counseling, physical therapy, and the new neurologist. It sounds like you are doing all the right things!

Please keep us posted on how things are going, OK?

Wishing you the best ,

[pennstater]

Jenni209,

Welcome. I am sorry to hear you are having a rough time. You definitely came to the right place. People here are so helpful and empathetic. They understand more than anyone what you are going thru.

Day to day, minute to minute, symptoms can change in intensity. Many people experience increased symptoms when more fatigued and/or with heat. Dealing with this uncertainty was one of the hardest skills I had to learn. I have become a much more flexible person and am no longer my own harshest critic.

It sounds like you are taking all the right steps. PT and Counseling should help you. I wish you well with both.

As for neuro, mine reviewed in detail, pulling images up initially.
If no changes, we would just discuss briefly why more symptomatic but no changes were visible with scans.

Since you have lots of questions, make sure your new neuro welcomes questions. The suggestion to review current frustrations to makevsure expectations are met is a great idea.

I would also prepare for your appointment and prioritize what you want to discuss. I always give neuro a copy of all symptoms with brief timeline associated (when started, chronic or intermittent, scale on 1-10 what it is at best and at worst, anything that may make symptoms worse). We don't have time to discuss it all, so I have summary of topics to discuss: main questions, new or worsening symptoms, any other medical updates from other docs. But he keeps docs and attaches to my medical record.

Let us know how neuro is. And post your questions, someone usually has an answer or helpful insight.

Good luck to you.

[palmtree]

It sounds like you just got that sudden onset of fatigue that so many of us describe. You could have been feeling panicky because you were planning to finish your walk. I know that feeling when a good mood can convert to anxiety but I don't understand it. I've had therapists that theorize that it's fear of success but I don't think so now. It just seems to be that the light and buoyant mood is too fragile and can't last so we slip into anxiety.

I'm glad you have lorazepam to help.

[TinaP303]

Hi Jenni
I can completely relate to your "head in the sand" and reluctance to accept a diagnosis of MS. I've done the exact same things. Acceptance of this is SO hard.
I love this site, so I know what you mean about stalking, I have learned a lot here.
My neuro does go over the MRI with me, he points out where the lesions are and takes as much time answering question as I need. I guess this is why appointments with him always run late.
I can only repeat other's good suggestions. Write everything down! When I don't, I forget what I wanted to talk/ask about.
Let us know how things go!

[hunterd]

in addition to the responses you already got and the good suggestions, here is another place to look. It is in our own resources, http://resourcecenter.msworld.org/ed...-resources/#ms

http://resourcecenter.msworld.org/ed...ok-reviews/#ms

there are a number of places to get information of all different sorts here.

[palmtree]

Almost everything I've learned about MS has been on this website. I can go to the neuro appointments prepared. One woman was describing the cramping in her legs and how dependent she was on Baclofen to stop the spasticity. After reading her posts, I realized my legs were cramping too.

So i went to my neuro, told her my legs were cramping and got a prescription for Baclofen. That knowledge saved a lot of time. I don't like telling my neuro every symptom I have because it strains the relationship. If I can narrow it down to the symptoms I know she can treat, things go a lot more smoothly and, when something serious comes along, it will be taken seriously.

[jenni209]

Thank you everyone. I feel empowered! I feel much better and know that changes in my life need to happen before I have a breakdown that will send me away in a straight jacket.
I'm still waiting on the referral for the new neuro and that is OK, this way I can educate myself before I go and be able to verbalize what I need. As for the embarrassment and feeling ashamed for need a cane. I am going to have the coolest canes I can find. We're talking graphics, bright colors and skulls. I'm going to have girlie ones and bad ones. I got this!

Thanks again. I think I just go may introduce myself on about me board.

[Mamabug]

...
Thanks again. I think I just go may introduce myself on about me board.

Yes; please do!

[JerryD]

hi jenni209,
Welcome to boards. You seem to be very informed about this disease. Jenni, there is nothing to apologize for. You have MS and just need to learn to adjust to the ever changing symptoms. No need for a straight jacket, although sometimes you may feel like you need one. If you can find an MS specialist neurologist in your area, you may be very surprised at the knowledge and expertise that a 'specialist' can apply to your treatment. Good luck

[tx2step]

hi

"Lurker" not "stalker"