Quix - Need advice for 17 yr. old daughter

[hopeforbest]

First, thank you for all that you do for people.

I have been consumed with worry for my daughter.  Her father has MS and she has been exhibiting some concerning symptoms.  

At age 13 she began having stabbing pains in her legs and bad fatigue at times.  Approx. 1-1/2 yrs. ago she began getting sick when exercising in the heat.  Twice when jogging in the heat she had to stop because her vision blurred badly - she said it was like her eyes were moving back and forth really fast.  Other symptoms:

Single hiccups several times a day (everyday for about a yr.)
Foot pain when exerting herself
Speech difficulty (tongue-tied)
Tingling sensation on her back
Continued stabbing pains now in arms too
Chronic dry eye
Bouts of unexplained fatigue
Startles incredibly easy
Doesn't like working out on Boflex because she says her arms
shake (weakness?)
All of these symptoms have come and gone or have been fleeting.

A neuro did a C-spine and brain MRI w/wo contrast in August of last year.  Both were clear.  For some reason no blood work was done.  I began to think that her symptoms could be consistent with thyroid disorder which my sister has so I took her to a family physician recently who took 6 vials of blood and ran extensive tests.  All of her tests were negative.  

I hope I am wrong, but I just fear that she really does have MS.  If she does I want to get her on treatment as soon as possible.  I just don't know what to do from here.  

My husband sees an MS specialist and I was thinking about taking her to see him.  Maybe he would be willing to do another MRI.  

I have really felt an urgency about getting early treatment for her.  I am confused however about the idea behind a "clinically isolated syndrome".  If a person has symptoms but a negative MRI, is that a CIS?  Like in my daughter's case who has been having vague symptoms for a few years but a clear MRI - did we miss the CIS and is it possibly now MS?  

I would be grateful for any input you could give me here.  I have been consumed with worry at times.  I can't believe that after watching my husband suffer with this that I may have to watch my daughter go through the same thing.  My husband is doing relatively well considering he has had MS for about 30 years (only diagnosed in 1991).  His walking has only begun worsening over the last 4 years.  He now walks with a pretty bad limp.  

Thanks for your help.

[hopeforbest]

I remembered another symptom - slight tremor on and off in hands.

I hope your steroids continue to make you feel better.

[grannyhotwheels]

I'm not Quix but I'm sure she will answer you as soon as she can.

I feel the concern for your daughter.  As a mother it is terrifying to think something may be wrong with your child.

I do think that I would talk to your husbands neuro. and see what he/she has to say.  Since the neuro knows your husbands condition and knows what type of MS he has, I'm sure that he would definetely want to see her.

This is just my opinion and trust me I know nothing on the medical aspect of things, but the distress in another Mothers voice,...yes...I do know that feeling.

I'll be praying,
Carol

[needanswers54]

I am not a doctor and hopefully our resident expert, Quix, will be able to respond sometimes soon.  I am sure that others will probably chime in.

I am just wondering if the doctor checked her for other possible autoimmune disorders such as thyroid, sjogren's syndrome, etc?  The thyroid can come under auto-immune attack.  I have heard of a thyroid saliva test being more sensitive than the blood test.  I have never had one done and am not really sure about it.  Did they do a complete blood count and vitamin B-12 level blood test or test for lyme or other infections or diabetes?  A neuro could also run SSEP/nerve tests.  

You know, I read something about the hiccupping everyday and for the life of me I cannot remember what that could be related to.  Does she just hiccup now and then or a lot or at certain times such as after she eats or gets sleepy or hungry?  Allergy, types of food and drink, or stimulating the vagus nerve through eating, drinking or stress can all trigger hiccups.  It has also been linked to an ulcer infection or as a causation or symptom of an ulcer.  Food, drink, and stress can all help trigger hiccups.  Does she consume a lot a yeast such as in breads?  What about peppers?  

Sometimes children get relief from a little corn syrup.  I wonder if about a third to one-half teaspoon of sugar on the back of her tongue would help your daughter in a pinch if she starts having a hiccup spell (if she is not diabetic, anyway).  It does often work for adults.  Of course there is always the holding your breath, the paperbag and frightening methods, the pulling on the tongue method, etc.  Do any of these work for your daughter?

She does seem to have many symptoms of MS.  But, you are right to consider all options such as a possible thyroid disorder.  So many symptoms of MS mimic other diseases and MS is a diagnosis of exclusion as I am sure that you are probably aware.  Also, does she appear to have any other possible metabolic endocrine or hormonal imbalances?

Does she have any neuritis or other eye problems?  Dry eyes can also signal sjogren's syndrome or disorder.  It can run along with other auto-immune disorders as well.  Does she get any rashes or swelling, particularly of the face, eyelids, or legs?  I hope she is not depressed with all this.  Could she be getting anxious and thus more startled?

I wish I had answers for you, rather than a bunch of questions that you may already have considered or know about.  It is wonderful that you have been there for your husband and now your daughter.  You are being a very concerned and loving parent.

Please, keep us all informed.  Others more knowledgeable will probably chime in.  Hopefully some answers and relief will come soon for your daughter.  Your postings just may help someone else down the road, also.  Thank you for joining our forum.  I am wishing the best for your daughter and your husband.  May you continue to be strong of mind, body, and spirit.

My best regards,

Torey



I would make a brief timeline of what is happening with your daughter as well as her meds and meals and social/environmental happenings.  It may help her neurologist/physician piece the frightening bits of puzzle together.

Also, does she have any allergies or has she ever been in an accident?  Sometimes neurological symptoms show-up many years down the road.

[hopeforbest]

Carol, thank for your comments.  Indeed there is nothing worse than worrying about a child.  Most parents would gladly take any ailment upon themselves to spare their child.  Unfortunately it doesn't work that way.  Thanks for caring.

Torey, thanks for taking the time to comment. I really don't know the specific tests that she ran other than thyroid.  I guess I need to request copies of the test results.  Or do I need to ask the office what they checked for?

Regarding the hiccups, they are just single hiccups several times a day whether she's eating, drinking or not.  I saw more than one sight that says retractable hiccups can be neurologically related.  One site specifically stated that it could be "an indication of multiple sclerosis".  

I also thought of sjogren's syndrome as she seems to have a dry mouth sometimes too.  She has gotten rashes on her legs a few times, but usually after swimming so we assumed it was an allergy to the water treatments.

I have never told her what my specific concern about her health is.  I think that once she realizes that the next doctor is an MS specialist, the cat may be out of the bag.  I have just always been vague and nonchalant about the doctor's visits.

She did have a bout of depression about a year ago (for no obvious reason) and some anxiety which I also wander is a byproduct of possible MS.  

I gotta tell you, I am just tired of wandering.  I don't want her to have to deal with this possible reality, but knowing what we know about how MS progresses, it is in her best interest.  It does break my heart that she may have to become aware of this.  All I wanted was for her to be able to live her young life without this worry.  

Regarding the hormone question - I don't know except that her periods are pretty irregular.

Thanks you again!

[Quixotic1]

Hi, I've read through your post and the responses.  I'm so sorry you have this worry about your daughter.  It really is so hard for a parent to face or consider a serious illness in their child.  Your fear is of MS and this is where you have posted so, even though I cannot diagnose anything online, I will talk about what you have told us in the "context of MS."

Your husband has MS and this raises you daughter's risk of developing it from that of the general population (about 1 in 750) to about 3% (3 in 100) or so.  Other factors which would influence this would be her ethnicity (more common in people with Northern European ancestry) and where you daughter has spent her life.  There is a higher risk to spending the first decade and a half in higher lattitudes.  There is also a role of past infections and probably other genetic susceptibility.

The first worries about stabbing pains in the legs and episodes of fatigue are very non-specific and very common in the pubertal adolescent (I was a pediatrician for 23 years).  So we don't know what to make of them, but we keep them in mind.  At 15 or so she began to "feel sick" (nauseated? weak?) when exercising in the heat.  Severe heat (Las Vegas?) or usual heat that doesn't affect most people who exercise regularly.  Does she have a problem with long hot showers or baths or hottubs?  Heat intolerance is a very common problem in MS and not really seen much in adolescents unless they are pretty out of shape or overweight.  And you say her thyroid (thinking "hyper" here) has been checked.

The vision blurring out in the heat is very concerning.  My question would be if it is the common low blood pressure in a teen who may not be well hydrated (early signs that you're about to faint - the vision darkens and you feel light-headed) or if it was really just her vision.  I gather it blurred just briefly.  This is something that has to be checked.  At the end of the post I am going to give you several recommendations for checking things out.

On the other symptoms - I need you to be more specific on the terms "come and go" (over seconds?, days, hours, months?) and fleeting. The word "fleeting" to me means lasting but some seconds or minutes.  For symptoms to be suggestive of a relapse of MS by definition they must last a minimum of 24 hours.  That doesn't mean they have to be continuously present, but noticed frequently for at least that length of time.

The foot pain, dry eye, speech difficulty are hard to evaluate online.  They can have many causes even in someone with MS.  Speech problems especially perpetuate themselves.  We have a problem, then become self-conscious and the problem worsens exponentially.

The tingling - if more than fleeting, the pains in her arms, the "bouts" (again, lasting how long?) of fatigue all suggest a neurological problem.  Th hiccups are interesting.  A few years ago I also began having isolated single explosive hiccups on about a daily basis.  I'm sure the neighbors think we have gun practice in our house, lol!  I truly don't know what they mean.  As someone said, there can be many causes.

The hyper or exaggerated startle reflex is also interesting.  Often it occurs in someone who is "wound up" and anxious, but it can also be from a state of higher than normal "tone" in the muscles.  It would be interesting to know what her reflexes are like on neuro exam.

The next item is also interesting.  When you talk about her not wanting to use the BowFlex, I assume that she used to use it and now finds she feels poorly after doing it?  If this is the case, then I understand the weak, shakey, jello-feeling you can get with weak muscles after minimum exercise.  Assuming this is not just from being out of condition, this may well be another neuro symptom that needs to be checked out.

Finally the bout of depression "out of the clear blue."  Depression is a PRIMARY effect of MS, felt to be caused by the diffuse dysfunction occuring in the brain.  Recent studies have demonstrated episodes of major depression in the two years preceeding diagnosis in a large % of patients (Sorry I don't remember the exact number, but I was impressed)  Many MS experts feel that in a patient with suggestive history and physical and tests that such an episode should be counted as an attack or relapse.  Does depression "run in your family?"  Was this your daughter's only episode?

So the MRIs were negative more than a year ago, but she has continued to have symptoms.  I feel that your concern, especially with your intimate knowledge of MS, and her higher risk, is totally valid.  Although you think she is not aware of your worries, I'll bet she is as concerned as you.  That may well be at the root of her new anxiety.  After all, she had an MRI and knows why that is done.  She also has access to the internet and may know a great deal about MS.   At 17 with a dad with MS, and having weird things happen to her for the last four years or so, she is likely thinking about it a lot.  I believe you should write up a timeline of what she has been through, trying to remember about how long or how frequent the symptoms were.  Get the results of all the blood tests that have been run.

And I think you should discuss it with her.  Ask her what she thinks of the different symptoms and ask her straight out if she is concerned about any of it.  A denial won't mean she isn't concerned.  She may be as worried about keeping her fears from you as you are keeping them from her.  At 17 she is within a year of making her own medical decisions.  I believe you should respect her ability to handle the question and encourage her to be involved in getting answers.

Finally, I suggest that you make an appointment with your husband's MS Specialist.  You could do it by yourself to present what you have observed and what you are worried about.  Or you could involve your daughter (this would be my preferred advice) and see the doctor for a consult.  At the very minimum she deserves the basic workup - a repeat MRI of brain, C-spine and T-spine, a Visual Evoked Response, blood work for those things that mimic MS, and I would include EBV titers, and most important a thorough neurologic history and physical.  Depending on these findings a spinal tap may also be warranted.

It is definitely time to end the wondering and worrying and to address the problems with your daughter as the adult she nearly is.  It will show her a great deal of respect.  Putting it off to save her blissful youth might serve only to rob her of precious time to slow a nasty disease.

I really hope this has helped.

Quix

[hopeforbest]

Thanks so much for taking so much time with your response.  I hope you know how much help and comfort you are to people.

I'll try not to consume a whole lot more of your time but I will respond to some of your specific inquiries.  

Interestingly regarding the blurry vision while jogging - she said exactly what you said - that her vision went dark and that her eyes were moving back and forth quickly.  I guess it is a good possibility that she was dehydrated.  The kid doesn't like water - who has ever heard?  Ha

Regarding the tingling on her back (the thing I find most concerning), it will happen several times a day for a few days and then go away for a while.  The same with the foot pain - a few days in a row.  And also with the fatigue - it will last for a few days.  

Supposedly the neurologist that she saw last year didn't find anything unusual upon examination.  Although I just wasn't that impressed with her or the length of the exam.  After sitting in on my husband's most recent dr.'s visit with the MS specialist, I am sure she will get a more thorough exam from him.  

We live in the South where it is pretty hot and humid.  It seems like she gets sick when it's not even that hot.  She is only about 8 lbs. overweght.  It just seems like none of the other kids are bothered by heat like her.  

There is a history of depression in my family - on both sides.  That bout of depression was the first time she told me about it but I think I saw it before then.  Since that time, she has been very upbeat and happy.  She is a very good student (4.2 gpa) and school seems to come easy for her.  She has a lot of good friends.  There are no drinking or drug problems.  Whatever her problem is, I am thankful that her cognitive skills seem ok still.    

Anyway, yada yada - you are right.  I have been deluding myself thinking that she is not aware of what's going on.  It is time to take the bull by the horns and go see this MS specialist.  I will be more candid with my daughter about my concerns.  Thanks again so very much.

[Heather3418]

You know something?  I would give anything if you were still in practice and better yet, a Neurologist.  If there was anyone that I would trust my heath care to, it would be you.

Wow, the medical profession suffered a great loss, when you had to retire due to health problems.  I can only imagine what a great pediatrician you were, with the care and compassion you show to everyone on this forum.

You are one in a million, Quix.  I mean that from the bottom of my heart.  You definitely were sent down from Heaven to help others.  One of those "angels with invisible wings" I always speak about.

Heather  

[Quixotic1]

I didn't answer one of your direct questions.  In general, a CIS (Clinically Isolated Syndrome putting the patient in a very high likelihood of developing clinically definite MS in the next few years) is a suggestive history and physical - with one clear attack or relapse.  The MRI supplies the evidence of the second attack by showing lesions.  I don't believe it is possible to declare someone with a CIS if they have a negative MRI.  So, "no" nothing has been missed so far.

Quix

[hopeforbest]

Hi all, back on Dec. 30th I posted a question to Quix re. my 17 yr. old daughter and her neuro symptoms.  To recap, her father has MS and she has had weird symptoms for about 4 plus years.  

Anyhow, I took her today to the MS specialist that my husband sees.  He is very thorough, a very good listener and took a lot of time with us.  At the end he said he did not think it was anything serious like MS but that her symptoms may be more consistent with a connective tissue disease like rheumatoid or lupus (first of all, are these not "serious" - that confused me a little).  

He looked over her blood work from a GP appt. a few weeks ago to see what she had been checked for.  He did notice and casually mention that one of her numbers was a little high - I think he called it "compliment" or something????  The max should be 60 and she was like 72.  He said it had something to do with inflammation.  Do you know what that is?

He is going to repeat brain and C-spine MRIs w/wo contrast in a couple of weeks.  He is going to check for lyme, rheumatoid and B-12.  He said that if we get a second clear MRI 1-1/2 yrs. after the first that he will feel pretty sure that it is not MS.    

I just wanted to give an update and get some input from you guys.  I was wandering how beneficial it would be to have the test done that picks up on past optic neuritis.  Of course I forgot to mention this to him, but somewhere in the back of my memory I think?? she may have mentioned her vision being off - not blurry, but dim.  

Thanks in advance for your help!!
Sandra