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1872606 tn?1450316237

When might we get some answers?

My 24 year old daughter developed sudden severe eye pain and vision loss in the last couple of weeks. She's currently diagnosed with ocular neuritis. She's having 5 days of IV infusion of steroids and had a lumbar puncture on Friday. She had an MRI on Wednesday but needs another of the full brain as this was the findings:

There is remodeling of the sellar floor with flattening of the pituitary,
findings consistent with a partially empty sella.The sellar appearance has
progressed since the comparison noncontrast head CT. There is also tortuosity
of the optic nerves with mild fluid present within the optic nerve sheaths and
suggestion of flattening of the optic disks. Together, in a young obese woman,
these findings suggest idiopathic intracranial hypertension.

White matter lesions are present involving the juxtacortical and
periventricular white matter and potentially within the superior cervical cord.
There is also studding of the callosal septal interface, and together, these
findings raise a possibility of a demyelinating disease such as multiple
sclerosis.

She's in a lot of pain and is having a blood patch done this morning after her IV infusion. Lumbar puncture showed high pressure and very high white blood cells.

We know that they can't treat her until they know for sure what she has. Does this sound like MS? I'm hoping whatever it is that she can receive treatment to live symptom free as many that I've read do.

Thoughts are welcomed and appreciated.

21 Responses
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667078 tn?1316000935
So I am clear she has Optic Neuritis. Did they also send the LP off to test for MS. They look for o-bands in the Central Spinal Fluid and not the blood. They would do a blood draw at the same time as the LP. They usually send to test to the Mayo so it takes at least a week to get back.

She may be diagnosed quickly or slowly at all depends on the neurologist. Steroids are the treatment for Optic Neuritis and MS.

The blood patch was done because of a leak from the LP. High pressure and high white blood cells have nothing to do with MS.

Some neurologists will diagnose her now others may want to check again in a few months. Some may even take years to diagnose MS. From my first MRI which showed MS it took me two years for a diagnosis.

It will help to have a MS Specialist. Neurologists specialize and all are not experts in MS. I had one who was not and she said I did not have MS even with all the tests showing MS.

Usually you have to have two attacks at two different times in different parts of the central nervous system for a MS diagnosis.

Alex
Helpful - 0
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome to our little MS community,

Young women diagnosed with Optic Neuritis that also have brain lesions located on their MRI will automatically be suspected of MS BUT your daughters MRI and history seems to be suggesting that there is evidence inconsistent with MS and alternate medical conditions are quite possible.

With the evidence of "intracranial hypertension" all the potential medication side effects will be looked into, as will medical conditions like obstructive sleep apnea, lupus, diabetes, chronic kidney disease etc........I think a clear diagnosis of what ever your daughter is dealing with, will take a lot more tests and a bit more time to work out, so if you can it would be best to try to remain open minded at this stage!

Cheers..........JJ

Helpful - 0
1872606 tn?1450316237
We just got another test result from the LP that was done on Friday:

"The oligoclonal band assay detected 4 or more IgG bands in
the CSF, which are not detected in the serum. This is a
Positive result."

Her result was 7. We have MRI/MRV on Thursday and back to Neuro on Friday. This result just popped into her email so needless to say she's a little more worried.

Helpful - 0
667078 tn?1316000935
It will take the doctor to diagnose MS. Caught early MS is a very manageable disease.

Alex
Helpful - 0
1872606 tn?1450316237
Thanks very much. This is new to us and a shock for a healthy 24 year old to be in such pain so suddenly. She ran 2 half marathons this year after just picking up running last year.

We have a cruise booked for her 25th birthday in April. I really hope she'll be ok to fly and sail. We know so little about this and have many questions.

Thanks again,

Bobbie
Helpful - 0
667078 tn?1316000935
She should be fine for the cruise. The trick is to be adaptable. Make plans but understand her body might not cooperate. I spent three weeks in Europe in September. I not only have MS but end stage cancer. We took a cruise so I could stay on board if I was not well. I was fine. I would suggest travel insurance. I needed it because I tripped over traffic furniture and broke my.nose. Something that could happen to anyone.

Many people with MS live active lives. Look up Wendy Booker. She had never run a marathon until she got MS. Then she climbed mountains. Not everyone can do that.

I swim an hour straight. I ride horses. I train dogs. I hike. All my MS took place when I was a child, 50 years ago. Each case of MS is unique.

It is a diseases that is unpredictable. She will not get every symptom if she has it. It will come and go. Some people get on a disease modifying drugs and have few relapses.

The main thing is not to fear the worst. Most people with MS do not even end up in a wheelchair.  I went all over 6 countries in two weeks and only used crutches if I had to stand a lot or I was tired.

Ask any questions you want.

Alex
Helpful - 0
1872606 tn?1450316237
Wow, that's really great to hear. She's a tough cookie so I'm hoping once she can see a plan and start to get some pain relief and her vision back, it will be easier to think more positively. We are waiting to hear about the fluid on her brain and high white blood cells in the spinal fluid, and of course the full MRI/MRV that is happening tomorrow.

We always have travel insurance and she was booked in August and I did get her a policy of her own at that time. We hope to never need the insurance but it gives me some piece of mind for a pretty low cost. We've been so excited for this cruise. We have other family members booked who have never been on one (this is our 8th) so they can spend her birthday with her.

Thanks again for the support and uplifting stories.

Bobbie
Helpful - 0
667078 tn?1316000935
You are a good mom and it is hard to see your child even adult go through this.

Alex
Helpful - 0
1872606 tn?1450316237
I just came back to read my posts again and wanted to acknowledge your diagnosis that you mentioned in your earlier post. I may have read all of the great things written and skimmed past your own illness. I'm sorry to hear that you're dealing with end stage cancer. Thank you for your help and knowledge as we begin this trek. Best wishes for you.
Helpful - 0
987762 tn?1331027953
COMMUNITY LEADER
Keep in mind that she may not actually end up being diagnosed with MS, there is MRI evidence that isn't generally related to MS, with the fluid on her brain there are alternative medical explanations that need to be ruled in or out and unfortunately or fortunately Oligoclonal bands in the CSF can also be seen in other illnesses, so at this stage i'd still highly recommend you try to stay open minded about what she's going to be diagnosed with!

Hoping things work out for you and yours........JJ
Helpful - 0
1872606 tn?1450316237
Thanks, JJ. It's hard to do, but we'll try not to worry too much. The full brain MRI/MRV are today and meet with Neuro tomorrow. Even without a diagnosis, her family Dr has indicated she is very worried about what is showing up so far. We pray for positive news.

Take care,

Bobbie
Helpful - 0
11079760 tn?1483386130
Hi Bobbie,

Just sending along positive thoughts and prayers for your daughter and your entire family. I am very sorry to read what you are all going through.

Cheryl
Helpful - 0
382218 tn?1341181487
Bobbie, have your daughter check her travel insurance policy to ensure that her symptoms don't constitute a non-stable pre-existing condition that would render the policy void. There is typically a clause that states how long the policy holder's condition is considered stable (typically three months or six months). If the policy holder travels before that time period has passed, and they become ill while travelling as a result of the pre-existing condition, they may not be covered. If there is any confusion over whether or not she would be covered, ask the insurer and get a reply in writing. Make sure to fully disclose all the facts and pertinent dates, as one can also have a policy voided due to non-disclosure.

Keep in mind that being medically cleared to travel by a physician has nothing to do eligibility for coverage. One must meet the policy's requirements.  Unfortunately many people don't read the fine print on their policy and assume they are covered when they are not. And find out the hard way.
Helpful - 0
1872606 tn?1450316237
My understanding of the pre-existing issue with travel insurance is if she suffered an illness within 3/6 months prior to purchasing the policy that it would not be covered. This problem has occurred several months after purchasing the policy. I will check into it but that is my understanding.

Thanks,

Bobbie
Helpful - 0
2 Comments
Yes there is that clause in regards to the timing of purchasing travel insurance. Likewise there is typically one in regards to being medically stable prior to travel. The reason for this is that being medically unstable just prior to travel increases the odds that a claim will be filed.
This is a typical clause. "Effective Date" of the policy is the date that five rage would come into effect, ie: normally the first day of travel.

"Pre-Existing Condition Exclusions
This policy will not pay any expenses or benefits relating to:

A pre-existing condition which has not remained stable in the three (3) months before the effective date.

Any pre-existing condition of a covered dependant and/or spouse that was not stable in the three (3) months before the date the dependant/spouse became covered under this policy.

For covered dependants under two (2) years of age, any medical condition related to a birth defect whether genetic, acquired, or congenital.

Pre-Existing Condition means an injury, illness or symptom that exists before the effective date of insurance.

Stable medical condition means that all of the following apply:

you have not had any new symptom(s);

and
existing symptom(s) have not become more frequent or severe;

and
your physician has not determined that your medical condition has become worse;

and
no test findings have shown that your medical condition may be getting worse;

and
you have not received, been prescribed, taken or had a Physician recommend any new medication, any change in medication. Exceptions: the routine adjustment of Coumadin, Warfarin, insulin to control diabetes (as long as the medication is not newly prescribed or stopped) and a change from a brand name medication to a generic brand medication (provided that the dosage is not modified);

and
you have not received, been prescribed or had a physician recommend any new treatment or any change in treatment;

and
you have not been hospitalized or referred to a specialty clinic or specialist;

and
your physician has not advised you to see a specialist or to have further tests, and you have not undergone testing for which you have not yet received the results.


Other conditions, limitations and exclusions apply. Please see the policy for details."
1872606 tn?1450316237
We purchased this policy for her 9 days after she was booked. We purchased our own policy shortly after we were booked several months earlier. Here is what her policy says:

Pre-Existing Condition means any injury, Sickness or condition
of You, or Your Traveling Companion for which within the sixty
(60) day period prior to the Effective Date of the Policy (a) first
manifested itself or exhibited symptoms which would have
caused one to seek diagnosis, care or treatment; (b) required
taking prescribed drugs or medicine, unless the condition for
which the prescribed drug or medicine is taken remains
controlled without any change in the required prescription; or
(c) required medical treatment or treatment was recommended
by a Physician.
The Pre-Existing Conditions exclusion is waived if You enroll in
the Plan at the time You pay the deposit required for the
Covered Trip (or within fourteen (14) days of the initial deposit)
and You purchase the coverage under the Plan for the full cost
of the Covered Trip.
Helpful - 0
1872606 tn?1450316237
Thank you very much, Cheryl, for your kind thoughts.
Helpful - 0
1872606 tn?1450316237
I forgot to paste the effective date info:

Effective Date means 12:01 AM local time, at Your location, on
the day after the required premium for such coverage is
received by the Company or its authorized representative.

No matter what, her health is our very top concern. We are now waiting for the results of today's tests. We only hope she's ok to travel and we have hopefully covered her well. I like to have good insurance and choose our policies for the best coverages.

Thanks again to all!
Helpful - 0
1872606 tn?1450316237
Thanks, Alex, regarding being adaptable. Fortunately, this cruise is not port intensive at all. It is meant for shear relaxation. 8 nights with 3 stops. Nassau (not sure what we're doing there yet), Half Moon Cay (we have the Oasis booked) and Grand Turk (we have a cabana booked at Margaritaville). We should be able to be very adaptable. We are also hoping we have 2 elderly folks joining us who will need mobility scooters. This should be a fun one. Amanda is in a suite at the aft and we'll have room for about 20 or so on our balcony. If we spend the entire cruise there it will be ok :-)
Helpful - 0
1872606 tn?1450316237
Just met with Neuro. She has O bands, optic neuritis, very low vitamin D and one active lesion. She will be monitoring symptoms and reporting any vision, balance, numbness type symptoms but otherwise waiting for another MRI in 4-6 months. She was told she is not being diagnosed with MS right now but that her chances of being diagnosed are increased because of the things that were found.

So I guess the answer to my original question is, that we will wait.

Thanks again for all who contributed.

Helpful - 0
1872606 tn?1450316237
Back with a new question, sorry.

My daughter was told by the Neurologist that she has a tiny vein on one side of her brain, one of the 2 that should be very large. We're doing some research and have found that there could be a partial collapse or obstruction in the jugular.

The neuro basically dismissed the tiny vein and even kind of joked about her silly anatomy.

Has anyone else had a venous issue in common with positive markers for MS?
Helpful - 0
5112396 tn?1378017983
Vascular anomalies in the neck and head are not unusual in the general populace and do not point away or towards MS or any other problem on their own. The brain has an enormous capacity to compensate if blood-flow is less than optimal in one area.

Do not get distracted by the flavour of a few years ago that was all over the internet regarding "stenosis" of various vessels. None of it has come out in the wash as being related to MS. The neuro is the pro. If an anatomical irregularity was the source of her issues, he/she would be investigating that.
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