SOOO SCARED FOR MS DIAGNOSIS. PLEASE GIVE ME INSIGHT

[carrie235]

Hi Everyone:
I'm so scared.  I have been having tingling issues since early March.  Along with that off and on is some numbness in face (that was for about a month but went away), a pulsating type feeling in my left foot and leg, vibrating in my body (happened for about a week but went away), my right foot wants to fall asleep sometimes.  Just this last week, it's like my toenail feels numb which I know sounds weird and then the bottom arch area of my left foot feels funny on and off.  I can't say for sure if I had an "optic" episode....a few months ago, I had taken a ton of vitamins in one dose because I thought I was getting sick and my right eye got these funny colors and I had trouble watching tv or writing for a few hours and then it cleared up...  I didn't really think anything of it at the time.

I had an MRI done and here is the Impression:

"More than 20 discrete small supratentorial FLAIR hyerintense lesions involving mostly the subcortical white matter, and some involving the deep white matter, which are more than expected for patient's age.  These are nonspecific in nature, however tey are not classic for MS, alhtough this could be an atypical presentation.  Follow-up scan for detection of new lesions or enhancement of current lesions may be helpful in order to establish a diagnosis.  No reduced diffusion or enhancement to suggest acute disease."

I am being seen at UCSF so feel like I couldn't be at a better place.  When the tingling first started, I saw a general doctor and two neurologists who said it was anxiety.  They referred me to a phychiatrist who prescribed me Prozac.  I started at 10mg and worked up to 40 mg and the feelings completely went away so I thought, yes, it was anxiety and thought for sure that my MRI was going to be normal.  Anyway, I go for my follow-up on my MRI and they told me that they can't say it is or isn't MS because it's not something they normally see.  By the way, I'm 48 years old, take good care of my health and am very fit (not that it makes any difference I guess).

I go for five more tests which include a lumbar puncture, a spinal MRI, two vision tests and some other kind of test which I'm not sure what it is at this moment.

I'm trying to think positive but I have my moments where I freak out and am reaching out to others who might be going thru something similiar.  I had to go off the Prozac because it was causing my hair to fall out and has caused me to have a terrible episode of Acid Reflux which I'm still battling.  I've been off the Prozac for over 3 weeks now.  I should add that I did in-fact have a very stressful year last year because I had a bad gallbladder that was at first diagnosed as gastroparesis which freaked me out.  I then had my gallbladder out in January and was doing fine until the tingling started in March.  

I wonder, if I had MS, would I have still felt the tingling even on the Prozac or is the fact that it went away while on the Prozac a good sign that it was in-fact anxiety and not MS.  It seems that they feelings are starting to come back only pretty mild.  

Also, if I had MS, would the tingling episode only last for a couple of weeks and then go away (or remit)?  The doctor said it would be unusual for the tingling to last months like mine did....

I have all these tests and then get my final diagnosis on August 31st at 4pm.  I'm trying to stay off the internet, because that only makes things worse, but here I am.

If anyone has any insight....good or bad, please let me know.  I've been going so many months worrying about this now that I feel like I'm going crazy.  

Thanks for listening.

[jujuminx]

Sorry, just saw this Carrie.  Now you know how mine turned out.  Life is going on even the day after dx!  

Don't overthink this Carrie, relax as best you can.

Whatever strenght I have doesn't come from me but from above. Be still and know that He is there for YOU.

I will be following your test results and praying for you sweetie.  

Julie

[carrie235]

Hi Julie
Just wanted to wish you good luck at your appt tomorrow. I'll be thinking about you. I have all sorts if tests happening this week and don't get my results until Aug 31. Please let me know how things turn out for you
Carrie

[jujuminx]

{{{{{{{{{{{{{{{{Lulu}}}}}}}}}}}}}}}}}}}}

Thank you so much.  Your words mean so much you cannot imagine.

Julie

[Lulu54]

Julie,

We will also add to your hopes that it not be MS - but keep in mind if it is, you can live with this MonSter.  We would never be offended that someone hoped they didn't have MS.  In fact all of us here live with that fantasy and hope we really don't have it either!  

MS is no longer the disease it was 20 years ago - all the drug therapies offer hope for  longer periods of remission and milder relapses.  

It used to be people living with MS had a life expectancy about 7 years less than the general population.  That has all changed - and we can expect as long a life as our peers.

We also know with disease modifying drugs the odds are in our favor that we won't need aids to get around  (walker, wheelchair, etc.) - studies show about 80% of us will continue to walk unaided.  That's not much comfort to the 20% left but at least it gives us encouragement to stick with our DMDs.

When you get your news, and we'll keep hoping it is not MS, be sure to let us know.  Start a new post so we don't overlook it buried at the end of something else.

I know the weekend will be long - find some things to do that will keep you busy, and preoccupied from thinking too much.

be well, Lulu

[jujuminx]

Thanks Lulu!  It's nice to meet you but I feel like I already know you as I have been reading your posts for weeks.

Thank you for being so wise and caring all at the same time.  I love this site and am so glad I found it.  You just know when you have found something that gives you what you need when you need it.

Hoping to post some news on a dx on Monday.  And no offense to anyone here, I am praying pretty hard and long for it not to be MS.

Julie

[Lulu54]

Greetings Carrie & Julie, I don't think we have met yet ... I hope you find what you are looking for here on this MS forum. It is a great group of people, and you usually don't have to wait long to get a response (except on the weekends, when it gets slow!).

I was dx'd at the age of 54, so I wasn't far from your age.  We don't fit the typical profile of the 20-40 year old range, but nobody told MS that there were rules to follow.  Each and every one of us are so very different in how this MySterious disease presents itself.

It is normal to have anxiety about this looming question, and the best advice any of us would give you is to learn all you can about MS.  Knowledge really is power and it will help prepare you for the next meeting(s) with the neuro.


Our health pages are excellent, all written by members of our community and factually accurate.  I hope you will take the time to read a few at least.  

The index for these HP's is at
http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Information-and-Resources-Index/show/22?cid=36

Welcome again - I hope we will see you again.  We're here to help you wait out the time.

be well, Lulu

[RedFlame]

I just wanted to chime in about the Prozac.  Prozac and other SSRI and atypical SSRI's can cause 'electric type feelings'.  However, these feelings are usually only felt when a dose is missed or when a patient stops taking the medication without proper supervision.  

Since your doctor took you off the Prozac I'm sure he titrated you off so that should not be the cause of your electric type of feelings.  You can ask the next time you are in just to make you feel better about it.

Hang in there.

Red

[jujuminx]

I am a newbie her and not dx with MS but hoping to get some sort of dx next week.  I am your age.  I so relate to your anxiety. The waiting and freaking out is the worst part.
Apparently MS isn't the same in any two people.  I have had only 3 episodes in my life, one in my 20's, one in my 30's and now one in my 40's.  After each episode (lasting about 2 months-numbness) all symptoms went away. This third one is almost twice as long as first two and now have tingling, minor weakness, and a whole host of odd sensations over most of my body.
Waiting for spinal MRI results to be given on Monday. All head MRI's "normal".  Do I have MS?  Neuro says "likely".  We will see.
I know you don't want MS, no one does but you have to follow thru and not let fear control you. Dx is much better than limboland with no treatment.  Good luck to you.

Julie

[jensequitur]

I've heard that Prozac causes acid reflux...  I think that it's a drug that helps reduce neuropathic pain and paresthesia, like.... ur... gabapentin.  But I could be way wrong!  But if it does, it would explain why your tingling went away.

The lesions in your brain, even if they are not caused by MS, are a good reason why you're having neurological symptoms.  Now it's important to find out what the cause of the lesions is.  I think that 48 is a little young to expect so many lesions in the brain.  There are several mimics of MS which cause lesions in the brain.  For more information, feel free to check out our Health Pages (upper right corner) which are written by members of Medhelp.  They're informative and readable!

MS-type symptoms can relapse and remit, or it can stay for several months.  It depends on how much damage there is, and how well your brain can heal from the damage.  I had vertigo for a long time after diagnosis.  Right now I can't remember how long it took to heal - but I think it was almost a year.

This is an excellent site that shows MRI results for MS, and some from other diseases that mimic MS.

http://www.radiologyassistant.nl/en/4556dea65db62