Worried about 18 year old son

[Neamom]

My 18 year old son’s brain MRI has shown “a few” lesions on his brain.  The radiologist report say consider a sequel of demyelinating process including MS, ADEM.  Other etiologies …. Such as Lyme disease.     He does not seem to have “typical” MS symptoms.  I am hoping for some insight to see if symptoms he exhibits are MS symptoms.   Right now his symptoms are:

.   Nine months of overactive bladder.  (No infections and ultrasound, CT scans all show normal).
.   Tail bone pain and muscle tightness  around waist – groin area (hard to explain) but feels worse
    when he is sitting or standing for long periods.    (Again, ultra sound, CT scan find nothing wrong)
.  Slightly enlarged spleen, lymp nodes in neck swell up with no pain a couple different times over
    the last few months.   (Mono test a couple times over last months are negative).
.   Fatigue
.   Nausea, loss of appetite, weight loss (10 lbs).  He’s now 6’ tall and 135 lbs.  
.   Little bit dizzy and some mild headaches.

Up to this past year, son has been extremely high energy, active and athletic.   He was a very good soccer player till last summer.  Varsity coach (one of first to notice) asked what is going on with his ball control and remarked he wasn’t playing well at all.  Son felt like “his brain was not telling feet what to do fast enough”.  He doesn’t have energy to play anymore.

He has been on Amnesteen (a form of Acutane) for 6 months.  So he’s been experiencing dry skin.  Neurologist  found no problem with letting him stay on for 1 more month until finished.

16 months ago he had MRSA infection on face several times.  It was misdiagnosed as impetigo and culture was done showing light growth of MRSA -finally got correct antibiotic.

GP says he doesn’t have classic symptoms such as eye problem, joint pain, etc.  Rheumotoligist feels it is likely MS.  Neurologist will not speculate until latest MRI neck and spine, Chest xray, and a multitude of blood work come back.  

Sorry to include so much info.  I have read about MS episodes and my son symptoms are consistent and seem to gradually be getting worse.

Any input or suggestions would be most helpful.  Thank you!

[Quixotic1]

Hi, and I'm sorry for the worry over your son.  That is agony for a parent.  Yes, your son's symptoms are definitely neurological and "consistent" with MS, but MS is a diagnosis that cannot be made until EVERYTHING else that can reasonably cause the symptoms and test results has been ruled out.  Although they are clearly working on that long list, two things stand out for me as they did for Lulu and others.

I'm pleased that the work up is involving several specialties.  

MS does not cause problems with the lymph nodes.  Nor does it typically cause weight loss in the absence of significant problems with the stomach.  It also will not affectt the spleen.  Enlarged spleen can be seen in other things than the EBV virus or Mono. The appearance of "nonpainful" lymph node swelling is very concerning to the pediatrician in me.  They may have already checked into this, but it wouldn't be a bad idea to get a biopsy of one of the enlarged lymph nodes .  Cancers (like lymphomas) can appear this way and can also present with a neurological picture.  That would also explain the weight loss.

I'm not trying to frighten you, though I'm aware that I already did.  It's not that something this serious is likely, just that it is possible and I am a believer in ruling out the more serious possibilities.  I think it would be a good idea to run your son by a pediatric or adult oncologist.

Another idea is to obtain a bone scan looking for the cause of the tailbone pain.

Since MS is on the table as a possibility, you might want your neurologist to contact one of the US Centers for Excellence in Pediatric MS.  There are 6 of these centers throughtout the US and they will also work with local physicians to consult on the workup.

http://www.nationalmssociety.org/about-multiple-sclerosis/pediatric-ms/pediatric-ms-centers-of-excellence/index.aspx

I hope this has helped more than just to be alarming.  

Quix, MD (retired from pediatric practice and with MS)

[Lulu54]

You might want to check out this website with an extensive list of things that look like MS......

http://www.umm.edu/altmed/articles/multiple-sclerosis-000474.htm

[Lulu54]

Hi Lynn,
Sorry I'm just getting around to reading this - it gets very slow here on the weekends but should pick up later tonight.

I'm wondering what types of testing your son has had for Lyme Disease?  I would copy everything you have written here and post it over on the Lyme forum (they are a great group) and get their feedback, too.

Dizziness, overactive bladder and muscle spasms do occur with MS.  But they also happen with a lot of other diseases.

The lymph node swelling and the tail bone pain don't sound consistent with MS to me, but remember I am no medical expert about anything.

There are a few other things that will cause lesions to appear on the brain, including Lyme.  Have you seen the radiologist's report and do you have copies of these films?  It is important to have both of these for his records.

Neurological diseases seem to involve an awful lot of hurry up and wait -neuro time moves slowly.  As a parent I can understand your worries.  July will get here soon than you might believe.  

Here's hoping the doctors will have some answers and see a clear cut pattern to his symptoms.

good luck to you both,
Lulu

[Neamom]

Thank you Audrey for your kind words.  I will try to put in chronological order.  Son has seen three doctors.  His GP, a Rheumotoligist, 2 Urologist and a Neurologist.

July 2009   -   Son felt tired more than usual.  Little bit dizzy and mild headaches.  He
                     also felt his soccer playing was affected and he was playing up to par.

July 2009  -    Visited doctor (GP) for school physical and he felt there was nothing to
                     be concerned about.

early
Oct. 2009  -   Lymp nodes on right side of neck swelled up (marble size- no pain).  
                    Doctor felt abdoman and thought spleen slightly enlarged.   Had a
                    Mono test done came back negative.

late
Oct. 2009  -   Son complained of overactive bladder.  Came on pretty suddenly  Had
                    never had any bladder problems to having to go every 20 minutes.

                    GP ordered an ultra sound & urine test.  Both came back fine.

Nov. 2009  -   Went to urologist (first).  He said nothing to worry about will go away on
                    own in 4 to 6 weeks.  Common in young men.   Put him on Enablex to
                    help frequent urination which didn't seem to help much.

late
Dec. 2009  -  Called urologist and said still no improvement.  But son muslces in front
                    of waist/groin area were tight - muslce spasms from trying to hold urine
                    all the time.  Also his tail bone began to bother him.  This doctor snapped
                    that he was "very sure" nothing serious was wrong and give it another
                    6 - 8  weeks.  I hung up and immediately called another Urologist.

Dec. 2009  -   New urologist changed med to Vesicare and it extended time between
                     bathroom visits to 35 mins.  Also started seeing a Chiropractor (who  
                     thought his spleen still enlarged).

Jan.-Feb.-March    Several more visits to GP, urologist, Chiro.   Took another Mono
                      test and came back negative.

April 2010 -    GP recommended Rheumotologist who did tons of blood test, blood
                     smear, CT scan.   He ruled out thyroid, B level, and tons more.  CT
                     scan was fine.  Loss of appetite and he is about 10 lbs down in weight.

May 2010  -    Rheumotologist ordered MRI Brain/Neck.  Test came back showing
                     "a few" lesions on brain.  He felt this was probably MS and sent son
                     to Neurologist.   GP felt son does not have common symptoms and
                     and was not convinced it was MS.   Son has 1 great-aunt who had MS.
                    
May 2010  -   Neuro looked over radiologist report and tested his reflexes.  She said
                    she would not say until she had seen MRI CD ROM herself and ordered
                    additional Neck Scan and C Spine MRI.  Also a chest xray and 15
                    different blood test which included Lyme Disease test.  

Today           Son doesn't have appointment with Neuro until mid July.  We will call
                    this week to hopefully get results.  He is suppose to start college in
                    August a couple of hour away so we need answers.  

                    His symptoms today are tail bone pain when sitting or standing too long.
                    Overactive bladder has improved slightly and he has stopped taking
                    Vesicare.  Fatigue and sleeping a lot.

Some questions we have are:

Based on his symptoms, do you think they should be looking at something besides MS even though he does have the lesions on brain?

We are a little unclear as to what it means to have an MS episode.  My son's symptoms seem to be consistent?

Are weight loss, loss of appetite, overactive bladder, and tail bone pain consistent with
MS symptoms?

Thank you to anyone who takes the time to read this.  Your advice will be most appreciated as we wait in limbo for an answer.

Lynn
NEAMOM

[Audrey_M]

Sorry to hear that your son has had so many problems over the years. It's rough being a mother and trying to keep an even balance, yet getting the best care one can for your child.

With this latest round of symptoms, can you tell us what kind of doctors you have seen and the tests that have been ordered and any unusual findings? It might be helpful if you list them in chronological order.

With the groin pain, was there an ultrasound or CT scan done to see if there was any enlargement of the lymph nodes, given that your son also has enlarged lymph nodes in the neck?

Hopefully once you give more info, others can jump in.

Hugs to you and your son,

Audrey

[Neamom]

bump!  Anyone?