Scary

[DonQuixote]

I've waited two months to get my neuro appointment, and it is next week. I stumbled across this community and I'm terrified the doc will brush me off. I have involuntary muscle jerks that are best described as being zapped with an electric shock. They happen during the day and when sleeping and then just stop for a couple of months before starting again. The may just be less intense that I don't notice them. I also have some visual issue that can only be described as a layer of static/noise over my entire field of view in all light with my eyes open or closed 24/7 for years. The ophthalmologists say there is absolutely nothing wrong with my eyes. I'm about ready to pull out my hair waiting, and from what I understand a diagnosis of any sort MS or other things can take quite some time.

[KitOP]

Hi and welcome to MSWorld.

The path to getting any kind of a diagnosis can be a long and bumpy ride. There are many tests that can be done, exams to be performed.

Be honest with the doctor, take notes and take them with you. Be persistent, you are your own best advocate. And if you are not comfortable with or get the answers from the doctor that you are seeing, see another.

What you are describing can be MS symptoms, and they can also be symptoms of many other things. The testing and exams can rule out many of them

Good luck with everything, and as you have questions, please post them here. Our members love to help, they are a wonderful group of people.

Please keep us in the loop.

[Mamabug]

I suspect that a neurologist is less likely to brush off symptoms than a primary care physician, because they are more aware of all of the oddities of a neurological illness. Hopefully, your neurologist will take you seriously.

Kit gave you good advice. Prior to your appointment, it may be helpful if you document more of what you remember regarding your symptoms, the dates they began, stopped, re-started, etc. If, verbally, you summarize it, and provide a well-organized typed list, perhaps the doc will pay close attention.

Best wishes on your road to a dx.

[jreagan70]

I'm terrified the doc will brush me off. <snip> I'm about ready to pull out my hair waiting, and from what I understand a diagnosis of any sort MS or other things can take quite some time.

The diagnostic process can be scary and take a long time. A major factor in how things go for you is how well you control your emotions.

Seriously, you can't go into your exam terrified and full of anxiety. That gives off a vibe that gives the doctor the impression that you don't have what it takes to tell your story clearly or fulfill your side of the doctor-patient relationship. And fear clouds people's thinking and causes them to make bad decisions.

A doctor's appointment is a business consultation, and confidence and clarity in telling your story is important. You have to be able to state your business without any drama, no matter what the appointment means to you and no matter how scared you are.

Tell the neurologist what you told us -- that you've had episodes of muscle jerking that are best described as being zapped with an electric shock. Give the best description you can about the episodes, including when it happened and how long it lasted. Follow the good advice you've already gotten here.

And tell the doctor that you've had static/noise over your field of vision in all light with your eyes open or closed 24/7 for years. Specify that you've had your eyes checked and the ophthalmologists have said that there's nothing physically wrong with your eyes, so the problem is apparently being caused by something else neurological.

Tell the doctor your symptoms with confidence and say that you're there to find out what's causing them. Confidently. Period. That's how you best advocate for yourself and smooth the diagnostic process.

I wish you all the best on your journey.

[JerryD]

All of these responses are good ones. I suggest that you have one of these doctors prescribe a full blood test/work up. Do you know what your vitamin B-12 level and vitamin D levels are? There is a blood test to rule out Lyme's disease. Be sure that your doctor checks everything that can be tested. and if you have vision problems, get in to consult with an opthalmologist. Good luck

[DonQuixote]

You're all pretty awesome. Thanks for the responses. I'll let you all know how it goes.

[Perennialz]

Greetings!
I know how you feel with the eye dr. I went to 3 appointments with them before I found an opthamologist who finally helped get the ball rolling with some help,(the MRI that found 2 lesions and optic neuritis). It was very frustrating before that scan, because the first 2 eye trips I had they still couldn't find anything wrong with my eyes, and even a pair of glasses which was useless to see out of on my 3rd trip.
I had a series of blood work done to rule out other diseases with another MRI scan on my neck and spinal cord which found another lesion. They've done the MRI scans with and without contrast which takes over and hour and a half to do but worth it imo.

I also noticed how awful my memory has gotten too, so I keep a journal of all the symptoms I experience, and tell the MS specialist everything since my last visit.
Best of luck with your upcoming appointment.
--Chris