MS at age 22. Need advice!

[Foodie123]

Hello

I am a 22 year old female. I suffer from depression and anxiety/panic attacks. I've had depression and anxiety for a long time but suppressed everything until now. I took a leave of absence from college and work because my depression and anxiety was getting so bad. I needed a break from everything and am currently seeking Cognitive Behavior Therapy. So, this is my story...I had a panic attack at work and freaked out and went to the ER.  I went inpatient for a week at the psychiatry department at the hospital. When I told my team of doctors about my episodes of panic attacks, they wanted to conduct an MRI on my brain to rule out anything physically wrong with me (seizures, etc.) and to make sure this was just anxiety and not a seizure. And what the MRI found was white matter neuron lesions in my brain which my doctor told me is a pattern of MS. The Neurology team came to my room on the psychiatry floor because they were very concerned about these MRIs. They conducted a physical MS exam on me testing my strength, vision, walking, balance etc. in which I passed. So the neurologists were very confused why I would have these lesions in my head if I weren't experiencing classic MS symptoms. So, the neurologist ordered another MRI on my spine in which they also found neuron lesions. The neurologist said the good news is that these lesions are not active as of right now. But who knows if they could become active in the future. I have a follow up appointment with a neurologist at a MS clinic in Boston.

I do suffer from lightheaded and dizziness throughout the day. I hear this shattering noise in the back of my head when I move my head from side to side. It's sounds like its my skull that's shattering but I know that can't be possible. Do you think this is MS related? What is it?

I would just like to hear other people's experiences with MS and any feedback/advice you could give me.

Leslie

[Quixotic1]

Oh, we'll always write back.  Just keep talking.

I was mistaken about the term for when the MRI is the only manifestion of probable MS.  I wrote that too tired and fuzzy.  It's called Radiologically Isolated Syndrome.  But, clearly you are beyond that.

I recommend that you get copies of the hopsitalization and especially get and keep copies of all the testing results.  It comes in so handy to understand the process.

Quix

[Foodie123]

Thank you so much for everyone's support.

My guess is that these lesions aren't new. They've been there for quite some time. You know its funny because I've always heard this weird cracking, shattering noise in the back of my skull since I was like 7 or 8. Sometimes when I would run I would hear literally hear something loose, like a piece of something going up and down. It's bizarre I know. Sometimes when I move my head from side to side I would hear this shattering noise in the back of my skull. When I told my pediatrician about this when I was 18, he ordered a CAT scan, and he said everything looked normal in the scan. My pediatrician told me it was probably some muscles making that noise. I don't know if this is at all MS related. I have trouble sometimes comprehending abstract ideas and keeping up with what people are saying and math has always been a problem for me.

3 years ago when I was 19, I remembered experiencing tingling in my hands, feet and numbness in my vagina. I felt off balance and felt like I was tipping over and I would have these bad headaches that wouldn't go away when I took regular Tylenol or other over the counter remedies. I remember this lasting for about a week and a half, and then these symptoms went away.

Since then I haven't had any tingling or numbness but I do feel lightheaded a lot and off balance..I don't know if this is just my anxiety and depression causing this new onset of lightheadedness and imbalances but I'm just so confused.

Also, when I went to the ER for my 1 week inpatient for psychiatry issues, the neurologists did conduct very invasive blood tests once they found these lesions in my brain and spine..the neurologist ordered 11 blood tests and I had 11 tubes of blood drawn all at once. All of these tests came back normal except one. There was 1 test that came abnormal and it has to do with arthritis. From there, my team of doctors set me up went a follow-up appointment with a rheumatologist this month.

So, I have two appointments this month. A follow-up with a rhematologist, and a follow-up with a neurologist from a MS clinic in Boston.

I'm currently seeking Cognitive behavior therapy from my therapist once a week.

I took a leave of absence from college. I'm going back to school in January. But I'm still not ready to go back to work..I work at a busy clothing store and I'm still on a leave of absence from there.

Please write back, I would love to hear more advice from you all.

Leslie

[Sparkysarah]

Hi Leslie

I just want to welcome you to the forum. I think that Quix has given you a very helpful reply and plenty of things to think about. So I just want to say that you have found a great place to seek support, ask questions and above all find many people who will probably understand most things you are going through. So never feel you are alone as this forum is always here.

best wishes

Sarah

[Quixotic1]

Hi, and another welcome to our home.  From your description, it sounds like your diagnosis of MS is not firm and you are being referred to the MS Clinic for further eval and/or confirmation.  I'm sure that the docs who saw you in the hospital asked you about episodes of symptoms other than the anxiety and depression - things like visual problems,  weakness, abnormal sensations and such.  Is there any history of those?  When did the dizziness begin?

Also did they send a large number of blood tests and did they do a spinal tap?  

There is a well-known group of MS patients who present with mainly an abnormal MRI.  If there are no neurologic symptoms this is called Radiologic MS and the person is monitored for the apprearance of the MS attacks.  It is unusual for this group to be placed on MS meds.

BUT, your doctors were really on the ball.  Far too often people with anxiety or depression (or both) are shown the door with a bunch of prescriptions.  Your docs were enlightened enough to know that one of the know presentations of MS is with mental or psychiatric changes.  The most common one of these is what is called an "affective" disorder like depression or anxiety.  MS not only affects the white matter, but also affects the gray matter which is where we think and feel.  Depression can be caused directly by MS in addition to being caused by having a serious, chronic disease.

It is also possible to have a normal neurological exam and have definite MS.  Especially in a young person at the beginning of the disease in the most common form called Relapsing-Remitting MS.  These people have intermittent attacks of symptoms during which their exam is usually positive, but during remissions their exam may be completely normal.

It sounds like your lesions weren't new.  That means when they used the contrast material the lesions didn't show up brighter.  The doctors were inaccurate to say the lesions weren't "active".  You ARE having neurological symptoms with your anxiety and depression and dizziness.  Something is causing these symptoms.

Now, are the anxiety and depression definitely being caused by the lesions?  No one can really know that.  It's just that if you do have MS it is certainly possible.

The whole issue of "active lesions" and symptoms is a confusing one.  There is an article, called a Health Page here that discusses how the two thing relate to one another.

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions-vs-Symptoms/show/61?cid=36

This might help or it might raise even more questions.  Feel free to ask.

Quix

Hi, Lulu!
Hi, Julie!

[jujuminx]

Hi Leslie. Nice to meet you, although wish it were better circumstances.

If I am reading your post right, your dr (s) say your MRI's are indicitive of MS BUT since you have no current physical symptoms that they can assess in the form of an in office visit, they are confused?  

Hummmmm.  I have MS and and my neuro tested me last week and I am competetly "normal" on all my inoffice tests.  I am going for my yearly MRI tomorrow to see if I have any active lesions and/or more lesions than last year at this time. But if I don't have any active lesions and have no symptoms, I still have MS.

So I guess I am questioning if your dr (s) understand what MS is. That the most common form is RRMS (remitting relapsing) which means that the sx can go away, compeletly, and you can have no active lesions. BUT your sx can also come back (and then some), this is the relapse and can cause you a world of problems.

Your current sx can be related to MS but it is a sx that I have never had so I can't explain to you what is happening. When is your f/u with a neuro in Boston?

I hope he/she better understands how MS works and understand that a person can have MS and not have any outward physical sx that they can "see" in an in office exam.

Ask the neuro in Boston if you have a definitive MS dx and if you do, ask about dmd's (disease modifying drugs) to help slow the progression.  MS today isn't what it was 50 yrs ago which is good for those of us with it, but it seems some in the medical community are way behind the times.

Good luck and keep us posted!

Julie

[Lulu54]

Hi leslie and welcome.  We can't possibly tell you if this is MS but can offer you guidance in working through this diagnosis.

It is good that the doctors are continuing to follow you.  You need to learn as much as you can about MS and then have these conversations with your doctors.  

This can be very frightening, but you can live with MS and do it very well.  Be sure to work with your therapist as you consider this possibility - it could very well fuel your anxiety and make that worse.

I hope we'll see you around some more.  Take care, Lulu