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thepalestgirl 08-14-2012 10:46 AM

new here. in limbo land, I guess
Hi, I've been reading this board for a few weeks. I don't even know where to start.

About a month ago the temperature in Chicago went over 100 degrees and I had something similar to what I now know is an MS flare. I wound up in the ER twice, I was convinced I was having a heart attack. Basically my entire left arm went numb. In the ER I had some sort of episode... they told me my left eye rolled back into my head while my right eye was still looking forward.

Many tests later my primary care dr. is referring me to a neurologist because of "a questionable spot" on my brain stem on the MRI. All my problems are on the left side of my body and the "spot" is on the right side of my brain stem. She said there are "several non-specific bright spots, which are very common," and everything else is normal. She said it could be a blood vessel and thinks I might need a CT angiogram of my head. Well I already had a CT of my head and neck and both were normal. I think my doctor is a complete idiot.

Anyway, my appt. with the neurologist isn't until 3 weeks from now. My symptoms seem to be getting worse. I realized I've had some of these for years and now they are really getting bad:

tingling/numbness - started in the left arm, now on the left side of my face too
language problems - can't find the right word; I replace it with a different one and don't even realize it. Also stuttering/slurring.
reading problems - sometimes i close one eye to read.
chest pain
trouble breathing
severe neck pain only on the left side
itching all over - this has just started the past week!
sleep apnea? I wake up gasping for breath. it's terrifying, and happening almost every single night.
exhaustion - i have an iron deficiency and thought that's what was causing it.
trouble swallowing - thought i was imagining this
clumsiness/balance problems - i try to write this one off as being tired.
swollen glands - i know this doesn't fit MS. it's only the left side of my neck.

anyway. i'm completely terrified and convinced i'm going to die in my sleep when i stop breathing. i am itching all over today and my left arm is still numb. lately it just feels floppy, i can't even describe it.

i guess i'm in limbo land. i was supposed to have an MRI of the c-spine too but i freaked out and had a panic attack and had to stop the MRI (I'm claustrophobic and the Ativan did not work).

I'm in so much pain from my neck and just feel like i'm going completely crazy. I'm having a really hard time not sobbing at my desk and on the train every day.

i don't know what to expect at the neurologist. do they usually look at the MRI images or only the report? the MRI lab gave me a copy of the disk with images, and it is awful, I can't even look at it.

i asked my dr. if the MRI showed any signs of MS and she said no. but she seems utterly clueless. i know MRI's can be clean and you can still have it. i don't know why she'd order an MRI of the brain and c-spine (both with contrast) if she didn't suspect MS. is she trying not to worry me?

for what it's worth I'm female, 32. no one in my family has MS, but that doesn't matter. i'm so scared. my boyfriend isn't taking any of this seriously, he thinks i'm fine. thanks for reading, i just need to vent.

MSJayhawk 08-14-2012 11:02 AM

Re: new here. in limbo land, I guess
:wave: Welcome.

You are entering limbo land, but if you are set up to see an MS Specialist (neurologist who deals with MS patients), then your journey should not last long.

Go online and get a copy of the Revised McDonald Criteria. This is a set of guidelines which most neurologists use in diagnosing MS.

The heat of summer could have been the stressor which cause your symptoms to present. A CT Scan does nothing for you regarding an MS diagnosis. It can be used initially to push the doctor towards a neurogenic cause which would require an MRI. If necessary they can sedate you completely for an MRI. It is not necessary for you to see your MRI images or report. I always wait until my neuro puts them up on her screen and explains them to me. This keeps me from making any assumptions which can lead to needless stress and worry.

Your symptoms can be caused by any number of possibilities. Your language difficulty is not uncommon. I have this whenever I am mentally exhausted. Your brain needs a rest. Turn on the TV and watch your favorite shows. TV watching tends to suppress brain activity which is something which would benefit you at this time.

You actually have a short time until you see the neuro. I would encourage you to write down your problems and onset info in a journal to share with the neuro. Also take some time to relax and enjoy some self-pampering.

IF IF IF you have MS, you are not alone and you have nothing to feel guilty about. You still have a way to go, but please know that you are not alone and I think that you will find that this site will provide good support as well as a place to vent!

Again, WELCOME!! :angel:

thepalestgirl 08-14-2012 11:08 AM

Re: new here. in limbo land, I guess
Thanks MSJayhawk. I've actually read the McDonald Criteria so I know what to expect.
One thing I forgot to ask, how do I know if my neurologist is an MS specialist? Do I just ask him? If he isn't, should I just cancel that appt and make one with an MS specialist so I don't waste any more time? I know he treats MS patients.

MSJayhawk 08-14-2012 11:13 AM

Re: new here. in limbo land, I guess
You can always check with his office. If he treats MS patients, then you are probably going to be fine. I would keep the first appointment at the very least. Many MS Specialists can take 4-6 months to see, but new patients can often get in quicker.

Because your condition may not be MS, I do not think you are wasting any time. You will need to run through a variety of tests which will consume most of your time of waiting for a diagnosis. If this neuro is wrong, at the very least he can order the requisite tests while you wait for another appointment. :angel:

thepalestgirl 08-16-2012 08:14 AM

Re: new here. in limbo land, I guess
Every day it's like I have a new symptom. Is this normal? it's driving me crazy. I just want to feel normal again.

Now I have some itchy red bumps on my neck, on the same side where my neck pain is, and one on my face. Also it feels like my left leg is vibrating at times, it's really weird. Based on my entirely unscientific google results it seems some people do get a rash with MS. Or maybe it's just because I'm itching so much.

What does everyone else out there do to reduce stress? I used to run a lot; I ran marathons. That has since stopped. It was a great stress reducer, but I think all the exercise just makes the symptoms worse. I've thought about getting a massage but I'm actually scared it will hurt more now.

MSJayhawk 08-16-2012 08:45 AM

Re: new here. in limbo land, I guess
My legs vibrate often. I have my phone set to vibrate, and I miss about 90% of my calls! I do get some skin sensitivity issues which pop up. I change the material I am wearing or I might need to dress cooler because overheating can cause these problems for me as well.

Have you tried a pool workout? You can swim or they have underwater treadmills. The problem with massage or chiropractic care is that if you have MS, seein either practice can worsen your situation.

Tai chi, some pilates, and Yoga in addition to the pool therapy can be good exercises for MSers due to their low impact. Outdoor stress relief for me is to mow my lawn, tend to my garden, hunt, or fish. As each of us is different, what relieves our stress can vary from person to person. My mom used to garden and bake for her stress relief.

Being indoors can be a problem due to cabin fever. You can develop a new hobby to help. My Sunday School teacher's wife is an artist and quilter. When she needed to get away from her stress, she combined her art and quilting and started making quilts which resemble paintings. To me it would be stress inducing! for her, she can spend 8-10 hours working on a quilt with complete peace. :angel:

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