Frustrated with my symptoms and doctor.

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Frustrated with my symptoms and doctor.

Postby singerbynight » Tue Jan 03, 2012 9:34 pm

I am a 33 year old confused female and here are my symptoms:

* Double vision with drooping left eyelid (This started all the mess)

*Fatigue...I always feel like I get run down. Even when I've been resting. I figured out it got really bad when it was HOT outside or sudden weather change. I love when I wake up and it is cold outside (Below 65 degrees), my body seems to come alive! Too bad I live in South

*Slight tremors in both hands. My right hand gets worse when I am hot. Only realized this after tracking my symptoms in a planner. My arms and hands have always gone numb and had tingling, so I don't know if that is related to all this.

*My handwriting would change as I worked. Sometimes I can't even sign my name in cursive right.

*I felt like I just couldn't think straight. Like all of a sudden I couldn't focus.

*I sometimes have speech problems. I can't seem to pronounce my words right or just say the wrong word entirely. So frustrating.

* I used to think I was just clumsy, but I would fall at least once per week. Now sometimes I can't walk straight and bump into people. On the hot days, I feel like I'm drunk.

*My arms sometimes get so weak that even lifting a fork seems like I'm lifting a weight.

* I have IBS symptoms as well (or at least think so). Horrible...

*Starting to have hearing loss and ringing in my ears (This could just be from all the rock concerts I attended when I was in HS and college.)

*I don't know if I get depressed or just plain mad. My mom says my moods are unpredictable right now. I'm just tired.

*Prob..more symptoms I'm forgetting at the

I got an MRI due to my double vision before going to my neurologist. I wasn't injected with anything. I was just told I have sinusitus by my doctor. I never even saw the scans. I also got a stress test which came out normal. I did full blood work and I only needed to take in more calcium. I saw a neurologist and gave him my symptoms. He said they sounded "autoimmune"? Sent me for tests for Myasthenia Gravis...negative. Now he said to just track my symptoms for 2 or 3 months to see what happens. I'm def not an expert, but I think I need to ask for another MRI. Any Ideas???
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Re: Frustrated with my symptoms and doctor.

Postby Athina » Wed Jan 04, 2012 9:21 am

You should definitely ask for a copy of your MRI report plus a copy of the pictures. Your symptoms could well be ms. Maybe the neurologist wants to rule out some other things first. The drooping eyelind (ptosis) is a symptom which I think might present in myasthenia gravis and some other neurological disorders, not ms?
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Re: Frustrated with my symptoms and doctor.

Postby Froggie » Thu Jan 05, 2012 9:06 pm

I can understand your frustration. I had Optic Neuritis back in 1999 and had what felt like every test in the book, including MRI, lumbar puncture and blood work, all to reveal nothing was wrong. It took ten years before I was officially diagnosed with MS, though I definitely had symptoms like fatigue, balance problems and numbness on my left calf. I also had vision problems as well. I think the main reasons no one caught it is no one was looking for it and said symptoms came and went. A gadolinium-enhanced MRI may be more revealing. I would definitely get a copy of your current films and the doctor's report and get a second opinion. Best of luck to you!
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Re: Frustrated with my symptoms and doctor.

Postby Skye » Sat Jan 07, 2012 8:18 pm

You know that many of your symptoms do sound like MS. But, I am not a doctor. You need to find the "right" doctor who will take you seriously. I know that I try to keep a positive attitude and it makes me forget some of my symptoms and make me look like anything but a patient with MS. The one symtom that sticks out in my mind is the lifting anything feels like lifting weights. That is so me too.
1. Keep a running list. You will add to it over the years.
2. Be patient because this may take time.
3. I'm on my third neuro in 6 years. One of them put in my MRI report that there were a plate and screws in my neck from surgery. I've never had neck surgery!
4. Stay positive and find ways to adapt until you get the dx. I use the Pilot pens that don't take any pressure to write with (it's excruciating to write a letter or essay). Eat with Correll Ware or paper plates. Use plastic cups. Use a rolling backpack rather than carry things. Find ways to make your life easier for now.
5. MS dx is a process of ruling things out. Once you find the right doctor, he will start sending you to other specialists to rule out other "mimicking" diseases (such as Myasthenia Gravis). Some of your symptoms, such as that droopy eye, are just an anomaly or part of something else. That doesn't mean you don't have MS.
6. If you feel you have MS, don't give up. Trust me. It's been a very long six years for me. I can't even count how many MRI's I've had before I found my current doc who can't believe the crappy MRI's I've had that weren't done according to protocol.
7. Keep your head up and keep the faith.
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