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.
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!
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
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.
It will take the doctor to diagnose MS. Caught early MS is a very manageable disease.
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.
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.
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.
You are a good mom and it is hard to see your child even adult go through this.
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.
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
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.
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.
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.
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.
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.
Thank you very much, Cheryl, for your kind thoughts.
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!
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 :-)
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.
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?
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.