12 months post CIS - Lingering symptoms

[Laurence]

HI there, im new to this forum. 12 months ago my 16 yr old daughter was admitted to RCH in Melb Australia and after a torrid 3 weeks in ICU - she was diagnosed with acute demylination of the brainstem - a clinically isolated syndrome. Her MRI showed 3 large lesions in the brainstem. She experienced a raft of neurological symptoms (double vision, facial droop, right sided weakness, numbness, lack of balance, co-ordination). 12months on - her residual symptoms are some cognitive and physical fatigue, right sided weakness, hand tremor, vision problem when fatigued and some arm shake. No oligoclonal bands...neurologists thinks this is a one off? What do you think?

[Snoopy]

Hello Laurence,
Has your daughter been seen since the Neurologist called it a "one off''? If not then it would be a good idea for new MRIs to be done and to re-evaluate her current condition.

[Scott1]

Hi,

Did they test for NMDA antibodies? When I was in Epworth, there was a girl there who had similar issues and that was her problem.

Regards,

[lyndacarol]

HI there, im new to this forum. 12 months ago my 16 yr old daughter was admitted to RCH in Melb Australia and after a torrid 3 weeks in ICU - she was diagnosed with acute demylination of the brainstem - a clinically isolated syndrome. Her MRI showed 3 large lesions in the brainstem. She experienced a raft of neurological symptoms (double vision, facial droop, right sided weakness, numbness, lack of balance, co-ordination). 12months on - her residual symptoms are some cognitive and physical fatigue, right sided weakness, hand tremor, vision problem when fatigued and some arm shake. No oligoclonal bands...neurologists thinks this is a one off? What do you think?

Welcome to ThisIsMS, Laurence.

Since you asked, "What do you think?" my first thought is about vitamin D. A vitamin D deficiency can result in neurological symptoms, such as you have described. Have you seen the following video?

The benefits of Vitamin D in treating MS (8 min.), 2011


A/Prof. Helmut Butzkueven from the University of Melbourne and A/Prof. David Booth from the Westmead Millennium Institute talk about the benefits of Vitamin D in treating MS.

If your daughter has had the 25-hydroxy vitamin D blood test, would you share the actual test result number with us? If she has not had this test, I suggest that you request your GP to perform one (and ask for a copy of the test results so that you have the numbers).

Although your daughter is not officially diagnosed with "MS," you may find the following article interesting:
If I had clinically isolated syndrome with magnetic imaging diagnostic of multiple sclerosis, I would take vitamin D 10,000 IU daily: Yes
Multiple Sclerosis Journal, 2013
Jorge Correale
http://msj.sagepub.com/content/19/2/137.full.pdf

[Laurence]

Thanks everyone for posting....I'll try and answer all in the one hit.

Yes, my daughter is seeing a neurologist. She has been having MRI'S at first 3 monthly. She hasn't had one since mid April. At that time, 2 lesions had disappeared and 1 was shrinking. Since that time her hand tremor and fatigue (cognitive and physical) has been persistent. She would often have to take herself to the health centre at school and sleep for a couple of periods to get through the day.

Her Vit D levels are excellent.

I don't think she has been tested for the HPV . She has been tested for EBV - and no evidence of this.

I get confused because if it was a one off then why have we got this permanent hand tremor and the other bits and pieces. do we just have to live with this.

she is due back to see her neurologist late September so no doubt all will be revealed. MRI in early December.

Thanks for your contributions.
Laurence.

[Laurence]

sorry - yes they did test for the MGO antibodies and nothing...

[Scott1]

Hi,

If it was MGO antibodies they would have been testing for the corony artery calcium score (or something similar) or prediabetic signs that glycolysis is awry . That would be different to an NMDA antibody test which is looking for a form of encephalitis that affects NMDA receptors in the cell. I believe its unbelievably rare but this girl had it and it sounds like what your girl experienced.

Regards,

[Laurence]

thanks I'll check NMDA antibody testing out. This has not come up in any discussion with neurologist yet.

Rgds,
laurence

[Snoopy]

Does she take any medications?

[Laurence]

No she is not on any medications.
This is what I'm a little concerned about as my reading says disease modifying treatments if taken early can delay the onset of MS symptoms in the long run. It wont stop the symptoms from happening but will delay.... I raised this with the neurologist and he believed there was not enough evidence to suggest the need for this.

Thanks
Laurence

[Snoopy]

This is what I'm a little concerned about as my reading says disease modifying treatments if taken early can delay the onset of MS symptoms in the long run. It wont stop the symptoms from happening but will delay.... I raised this with the neurologist and he believed there was not enough evidence to suggest the need for this

Her Neurologist doesn't believe there is enough evidence to call it Multiple Sclerosis meaning she doesn't currently meet the diagnostic criteria for Multiple Sclerosis (The revised McDonald Criteria). Your Daughter was diagnosed with acute demyelination of the brainstem. What caused this is still undetermined.

She has been having MRI'S at first 3 monthly. She hasn't had one since mid April. At that time, 2 lesions had disappeared and 1 was shrinking

Two lesion gone and the other lesion shrinking is great news, your daughter's body is still healing. Time and patience is needed and not a rush to use treatments for something she may not have.

[Laurence]

OK....time and patience it is.

It seems to be a blury line? MS or acute demylination of the brainstem with persisitent symptoms?? Tricky....

Thanks for all your feedback.
Laurence

[NHE]

Hi Laurence,
One of the differential diagnoses for MS is a vitamin B12 deficiency as it can cause neurological symptoms stemming from demyelination in both the brain and the spinal cord. Do you know if your daughter has been tested for a B12 deficiency and, if so, what her B12 levels are?

You may wish to read the following topic for more information.

http://www.thisisms.com/forum/natural-a ... 24857.html