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My daughter is still a teen but has been sick for a number of years now. She already has an auto-immune disease and a couple of rare disorders, and she's high functioning autistic, so there are a lot of symptoms she has on a daily basis plus sometimes it can be hard for her to describe.

For the last year or so, however, some symptoms have been getting worse. Fatigue has been so crushing that she has a hard time getting out of bed at all. She says that when she walks, it 'feels wrong.' Not pain, just 'wrong.' And about 3 months ago her vision suddenly got worse. She is no longer growing, but her vision dropped an entire diopter in about 6 months. It feels blurry to her, like the letters kind of swim. And yesterday, she had, only for a few seconds, her vision go crazy, like someone took the world and shook it back and forth rapidly - it sounded like how I've heard oscillopsia described, honestly.

She does have some numbness and tingling sometimes, but honestly, we've been assuming she's having overuse injuries in her arms, like cubital tunnel. she has vitamin D and iron deficiency - which is what we've been assuming the fatigue is from - but she's on supplements right now to treat it. And honestly, when she test fine for both of these nutrients, she was STILL fatigued, a couple years back, just less so.

I haven't the slightest clue if she has MS, but with the vision issue, MS has come up for the first time as a possible cause. And this pretty much follows a lot of her health problems' track record. She starts feeling bad, has a lot of generic symptoms that get worse and we don't know the cause, and then one symptom that is indicative of a disease/disorder will pop up and we'll finally start looking in a certain direction. So far, each time it's happened, she's turned out to have the disease or disorder we were checking for. I am hoping that this is not the case yet again, but if it is, I want to be prepared.

She has been referred to a neurological ophthalmologist, but can't be seen until October.

Are there any good reference materials you would recommend to learn more about MS, its progress, and what treatments are currently available for symptoms, or what, if anything, may help slow progression? Any questions that would be good to ask a neurologist in this situation? Any of my daughter's symptoms it would be important for them to know that would help ensure the proper diagnosis, or a referral to a proper specialist?

And are there any treatments that are important to start ASAP if there IS a diagnosis? What questions would you ask a specialist to check how knowledgeable they are ABOUT MS if you go to them for treatment?

Thank you for all your help. Like I said, I am hoping that she does not end up with another diagnosis for something difficult to cope with, but we've had it happen so frequently that at this point, I start researching and trying to understand things at the first sign there could be a problem, so I can be prepared if it happens, you know?

shamom wrote:She does have some numbness and tingling sometimes, but honestly, we've been assuming she's having overuse injuries in her arms, like cubital tunnel. she has vitamin D and iron deficiency - which is what we've been assuming the fatigue is from - but she's on supplements right now to treat it. And honestly, when she test fine for both of these nutrients, she was STILL fatigued, a couple years back, just less so.

I realize that you have much more experience (and MANY more files of info) on topics pertinent to your daughter's situation than I could have; I wish I could offer real help to you. With my current interest in vitamin D and MS, I can only offer a few ideas.

Your daughter has vitamin D deficiency… Has this been going on long-term? What is her 25-hydroxy D level? Has her doctor prescribed vitamin D? What form (D3 or D2?)? What dosage? Since magnesium is critical for vitamin D function, has her magnesium level been tested? Or is she ingesting generous amounts of magnesium supplementation?

Are you familiar with the California-based group, GrassrootsHealth (http://www.GrassrootsHealth.net)? Their website offers lots of good, general vitamin D info. I encourage a thorough reading of the site.

Perhaps you have already read the following, as a result of your daughter's situation:

Vitamin D and Autoimmunity: Is Vitamin D Status and Environmental Factor Affecting Autoimmune Disease Prevalence?
Margherita T Cantorna
http://ebm.sagepub.com/content/223/3/230.abstract

The environment in which the encounter of antigen with the immune system occurs determines whether tolerance, infectious immunity, or autoimmunity results. Geographical areas with low supplies of vitamin D (for example Scandinavia) correlate with regions with high incidences of multiple sclerosis, arthritis, and diabetes. The active form of vitamin D has been shown to suppress the development of autoimmunity in experimental animal models. Furthermore, vitamin D deficiency increases the severity of at least experimental autoimmune encephalomyelitis (mouse multiple sclerosis). Targets for vitamin D in the immune system have been identified, and the mechanisms of vitamin D-mediated immunoregulation are beginning to be understood. This review discusses the possibility that vitamin D status is an environmental factor, which by shaping the immune system affects the prevalence rate for autoimmune diseases such as multiple sclerosis, arthritis, and juvenile diabetes.

I understand that Dr. John Cannell of the Vitamin D Council has done research in the last five years on the connection between vitamin D deficiency and autism. I don't have any of it readily at hand; it shouldn't be too hard to search and find.

I admire your strength and ability to cope with a tough situation. We don't want your daughter to end up with the MS diagnosis either; we are here to offer our unique and individual opinions – we will give any help we can.

As for your questions at this time… I think the Internet offers good information on almost every condition (including MS). In my opinion (I have no medical background) there is no effective medication or treatment for MS, since the cause of the disease is unknown. I tried FDA-approved injectables for more than 10 years without observable effect and with considerable unpleasant side effects. For that reason, I stopped years ago, and I see no urgency for your daughter to start (IF she's diagnosed with MS).

Sorry to hear that your daughter is ill. Without a diagnosis, it would be difficult to start on any kind of medication but there are many things that can be done to help her feel better until you do get a diagnosis.

Is she on a gluten free diet?

What kind of diet is she following?

What supplements is she taking if any?

Have you had comprehensive blood work done?

How is her weight? Does she exercise?

Is she under a lot of stress?