Anxious about exacerbation

[vidalouise]

I am going to start by apologizing for such a long post, as I know it will be regardless of my attempts to keep it short.

Like many of with MS I had symptoms for over a decade before I was diagnosed. I started having symptoms at the age of 10.

That was in the late 80's. No one thought if pediatric MS at that time. My experience with medical care was not the best, to say the least. The only person who ever believed I was sick was my mother. At best doctors either said things like "you must have sprained it in you sleep" and at worst decided that all my problems were psychosomatic & referred me to psychiatrists who prescribed a myriad of ridiculus medications.

Finally, at the age of 22 I developed a severe case of optic neuritis that has never really improved. Because of my past experiences I was completely blind in that eye for 3 days before my boyfriend finally dragged me to the er. I was completely astounded when the doctor looked into it and said "you can't see anything out of this eye, can you?" It was the first time any doctor believed something was wrong. I was floored. I was diagnosed with MS a few weeks later after a MRI showed numerous lesions.

The doctor at the er couldn't understand why it had taken me so long to get help. I sat there like an idiot trying to explain that "I didn't know if I was REALLY blind, or just THOUGHT I was." You see, I kept thinking that it was just that I had convinced myself it wasn't working. Maybe I'm just thinking about it too much. I know that sounds insane, I'm sure the doctor thought I was. Especially if he looked at my 12 years of pych records, LOL.

My diagnosis didn't shatter my world. It provided a sense of relief. I truly thought that now that I had a concrete diagnosis doctors would treat me differently. That belief didn't last long.

But now, thanks to losing my fear of firing doctors once they make me angry enough, I have wonderful doctors. So what's the problem you ask? Well...

Everytime I go into a flare, or see a doctor, or have any type of testing, I have terrible anxiety. And I have all three of these going on at the moment.  

I am especially panicking because I can't find any way to PROVE my symptoms. My left leg is extremely heavy. It feels HUGE, but its size is normal. I have a few numb spots on my thigh and my toes tingle a little. It feels very cold sometimes, but isn't when I touch it. And it sometimes feels like water is trickling down my leg. It feels stiff, but when I touch the muscles they don't feel stiff. It takes a ridiculous amount of effort to move, by does move. It moves easier when I am sitting or laying down, but when I try to walk all I can do is drag it behind me.

How can I show this to my doctor? I have never seen him during a flare. I get an MRI next week, what if there aren't any enhanced lesions? I have had neuros the past that told me no new lesions, no new symptoms. Fired him, by the way.

The issue is how to overcome this fear and anxiety. It would be so much easier if my symptoms weren't so invisible. I am on steroids now, but haven't seen the doctor yet. I just keep panicking that I'm gonna be told "there isn't anything wrong with you, why are you walking like a zombie?"

Sorry for ranting so long. But thank you for reading. I feel better just getting it out :-)

Bright Blessings,
April

[supermum_ms]

Hi April,

Welcome to our wonderful corner of the web!

If you haven't already, please take some time to read our health pages, top right of your screen the yellow icon. You might find 'lesions vs symptoms' most helpful and interesting, its well worth your time.

Its actually quite understandable to have high levels of anxiety because of your life experience with dr's, so try not to beat your self up over feeling this way. I dont know if you've tried medication alone but sometimes cognitive behavioral therapy can really help you find ways for you to handle anxiety and might be worth looking in too.

Ok as for the other bits, you just can't match all sx to a lesion, that would be too neat and MS is a MySterious disease and nothings that easy lol. But seriously you are dx with MS, all the sensory sx that are not visible are NORMAL for MS, so if your dr doesn't take your word for your sensory sx, well fire his a$$ too!

The walking aspect will be visible on neuro testing and nerve conductor tests should pick up the rest thats not working correctly. Please try not to let your self get overwhelmed by your past experiences, be kind to your self!! Your in a relapse I expect and for those that have anxiety, this is the time they really find the hardest to manage btw steroids can be adding to the problem too so it might be helpful to keep a diary on what your experiencing during a relapse and or when your on steriods to help shorten the relapse and bring it up with your neuro.

Again welcome, stick around we help each other in the worst of times and celebrate the best one too :-)

Cheers............JJ

[Willowwoman777]

Hi April,

I'm here on and off..How to overcome the fear and anxiety? JJ had some great suggestions. The way I handle it is to remind myself that I know my body like nobody else does and while it may not make sense, I try to explain the best I can. I don't think anyone enjoys going to the dr, but unfortunately, we have to do it. I, too felt a sense of relief when I was dx'd..not uncommon.

As far as ER docs? I think I had a whopper last time I went. I went almost totally blind for several hours. My brother took my to the hospital and chalked it up to a funky migraine. He said "no way is this related to the MS"...fast forward 6 weeks and an MRI later. My neuro hit the roof that it was blown off cause I had gotten a new lesion in the occipital lobe..

My approach to the desease (and dr. appts., uncertainty, etc.) is spiritual..that's how I try to handle it. I try to remind myself that nothing I'm going through is a surprise to God and I ask for His grace to see me through. Works for me :)

[vidalouise]

Thank you for your responses. It helps so much to have the validity of my symptoms reaffirmed by people who understand what its like to live with this disease. And I am finding a lot of valuable information on the health pages . Thank you again!
Bright Blessings,
April