Is it MS

[Ann482]

I have had various vague symptoms occurring for the past few years.  Some of the symptoms have been very vague and I won't even discuss them with my doctor because she makes me feel like I'm nuts!  The symptoms I have been having are numbness in extremities and my face, vibrating sensations, extremely cold, tightening feeling in my diaphram area and the past 2 years trouble seeing(worse at night).  I also have this spot in my back that has been itching for 2 years with no rash. I went this past July to see a NeuroOphthalmologist and she ordered an MRI and some test to be completed on my eyes.  The MRI says demyelinating should be considered.  Does this mean I have MS?

[sllowe]

I just saw this....

Bumping it up for you - disregard my questioning on your prior thread.  This will remind everyone what is going on...

See you soon!
-Shell

[Momzilla]

Well, hang in there, and we'll hang in there with you!

It sounds like your Neuro Ophth is on the right track.  But you need to hear from a doctor what their impression of your MRI report and images is.  Ask either your PCP or the NOphth what they think.  It is your right to know.

Also -- Don't let your doctor let you think you're nuts.  You are not.  THere are many of us here (myself included) who have less 'test proof' than you to show that something is not right.  You know your body better than anyone, including your docs.  If something feels like it's changing in a strange way or it's just 'not right,' pursue it, and do NOT let a doc who sees you for a few minutes out of their day make you feel awkward about discussing anything.

I think it may be helpful for you to begin a time line of symtpoms to put things in order so that you can give a doc (you should be referred to a neurologist soon) a good picture of what's going on with you.

In the top right corner of this page is a section with "Health Pages" on it.  Click it and read at your leisure.  I know you will find a lot of topics that apply to you.  One is there to help you develop a time line for your doc appointments.  I think it's called "TImeline 101."  Also look at the other pages regarding paresthesias and MRIs.  I really think you'll find them helpful.

Hang in there and feel well!

Zilla*

[Ann482]

The MRI shows lesions on the left side of the brain.  The test the NeuroOphtalmologist wants me to have are an ERG and VER.  My appointment for this is on 09/22/2008. I have not discussed the results of the MRI with the NeuroOphtalmologist yet.  My PCP has not talked to me about it either.

The symptoms with my pain and tightening of what I call the diaphram area has been going on for awhile.  The doctors have me put through a battery of test and procedures with no clear cut results. I was treated for GERD for about 5 years and then was diagnosed with gastroparesis(I am not a diabetic) in 2005. In March of this year I had a CT done that says malignancy could not be ruled out and clinical correlation needs to be looked at.

All the vague symptoms of numbess and strange sensation have also been coming and going for awhile but have gotten progressively worse and the vision thing started last year and is getting worse.  I feel like I am at my wits end!

[Momzilla]

Hi, Ann, and welcome to the forum!

I'm sorry you've found youself in the frustrating journey to diagnosis.  I'm sorry, too, that you don't feel comfortable discussing these newer symptoms with your doctor. She shouldn't make you feel awkward about discussing anything, although it's quite possible that she is just puzzled herself and doesn't know what to make of things just yet.

About the MRI:  The report doesn NOT mean you have MS.  But if the radiologist thinks that demyelination should be considered, you really need a good neurologist to sort this out.  MS cannot be ruled out at this point.

You certainly have symptoms that many here who have a diagnosis of MS suffer with.  The strange sensations and numbness you mention are paresthesias.  The cold tightening in your torso may be a combination of MS symtpoms, too.  The cold feeling would be a kind of paresthesia, I think, and the tightening could be "banding."  

I'm glad you have found a neuro-ophthalmologist to take you seriously enough to get the MRI done.  WHat did she have to say about the report?   Is the other test she ordered called a VEP?  Or evoked potentials?

It would definitely make sense to get some evoked potentials testing done, and perhaps a lumbar puncture.  What about the MR images made the radiologist think demyelinating disease?  DId it mention any lesions?  Inflammation of the optic nerve?

We're glad you're here, and will be happy to help you navigate through all this.  In the mean time, try to find a neurologist you feel comfortable with, who has experience treating patients with demyelinating diseases.  Perhaps the neurophthalmologist can refer you to someone.

And try to relax.  Pull up a chair and get comfy!  

Feel well,

Momzilla*