Newly Diagnosed

[QTKT]

Hi everyone,

My name is Katey, and I am 18 years old. I was officially diagnosed with MS a month ago. This is my first time on any kind of MS support group/blog.

My MS journey started a few months ago. I was sitting in my college dorm room talking on the phone one Saturday, when the entire right side of my body went numb. There was no loss of motor control or function, but to the touch, everything was numb. I called a doctor friend, and he advised to just watch it, but I did schedule a doctors appointment for that Friday. The next few days, the numbness continued. It wasn't painful, but was very strange not feeling anything on the right side. By Tuesday though, I started to have burning sensations and tickling feelings on the right side. By Wednesday, I was feeling pain in my right hip, tailbone, lower back, and leg. By Friday, it hurt to walk. In the mornings I would be okay, but by mid afternoon I was very tired and in a lot of pain. Something as simple as grocery shopping exhausted me and caused a lot of pain. At my doctors appointment that Friday, my doctor scheduled MRIs and took blood labs. After a few days of this pain and exhaustion, my symptoms resolved. Three weeks went by, and I completely forgot about my symptoms all together, until the day after my MRI. My doctor told me that I had lesions on my brain and spinal chord, and that it was most likely multiple sclerosis. Long story short, many neurologist visits, labs, and MRIs later, I was officially diagnosed.

At first I was very scared and very depressed, I am only 18! But I have since somewhat adapted to this new part of my life. As of now, I have had only random flare ups since this first attack. My symptoms seem to be mostly sensory, in my legs and tailbone. After the initial MS suspicion, I did a lot of research into diet and MS. For about a month now I have been on a low-fat, whole-foods, plant-based, vegan diet. It was difficult at first, but I felt A LOT better and had higher energy levels. I would highly recommend researching diet, as I have had great improvements since changing my diet. I have also began daily yoga to help with stress and physical well-being. I also would recommend exercise, even a short walk. For me it boosts my energy levels and moods, and helps with the pain. Lifestyle has been a really important tool for me on beginning my journey.

I have been taking Tecfidera for almost 3 weeks now. I have not experienced any side effects besides flatulence. I haven't particularly noticed any changes or improvements, but I cannot say I do not feel good right now. Hopefully it continues to work well for me.

If anyone has any advice I would love to hear it! Feel free to question or comment as well.
Thanks for reading about the beginning of my journey!

~ Katey

[lyndacarol]

My name is Katey, and I am 18 years old. I was officially diagnosed with MS a month ago. This is my first time on any kind of MS support group/blog.
…
At my doctors appointment that Friday, my doctor scheduled MRIs and took blood labs. After a few days of this pain and exhaustion, my symptoms resolved. Three weeks went by, and I completely forgot about my symptoms all together, until the day after my MRI. My doctor told me that I had lesions on my brain and spinal chord, and that it was most likely multiple sclerosis. Long story short, many neurologist visits, labs, and MRIs later, I was officially diagnosed.
…
If anyone has any advice I would love to hear it! Feel free to question or comment as well.

Welcome to ThisIsMS, Katey (QTKT).

I have a question… I'm curious to know if your doctor included nutrient testing in those blood labs on the initial Friday appointment. Have you had a vitamin D blood test (the "25-hydroxy D" test) at any time since your symptoms began? If not, I urge you to call your GP and request the test. (Also request your own copy of any test results – it is important to have the actual numbers.)

Even at 18, you seem to be handling this new situation very well. I commend you for doing research, changing your diet, and getting serious about exercise. (My caution is on the vegan diet – vitamin B12 is only found in animal-based foods. Anyone who does not eat meat, poultry, fish, eggs, cheese and other dairy products needs to monitor his/her B12 level and maintain an optimal level. Vitamin B12 deficiency can occur in any person at any age; undetected, it can lead to neurological symptoms.)

[QTKT]

Thanks so much for your concern. My initial blood labs did find Vitamin D deficiency, and I was put on Vitamin D pills. My second blood tests also showed low Vitamin D levels, which my doctors are monitoring. They did give me the actual numbers, but I was wondering why you said it's important to have them?
Thanks for your note about B-12 as well.

[lyndacarol]

My initial blood labs did find Vitamin D deficiency, and I was put on Vitamin D pills. My second blood tests also showed low Vitamin D levels, which my doctors are monitoring. They did give me the actual numbers, but I was wondering why you said it's important to have them?
Thanks for your note about B-12 as well.

Your doctors are wise to be monitoring your vitamin D level in your blood – it seems that you have found some good ones (Hold on to good doctors!). Since people process vitamin D differently (some people will raise their blood level greatly on a certain dose, but others on the same dose will hardly see a change), the blood must be monitored.

The actual number results (and the reference range used by the lab) are important to know because numbers interpreted as "fine" or "normal" by one doctor can have a totally different meaning to another. Test results and reference ranges are controversial.

Take vitamin D for example, many labs use the reference range of 30-100 ng/mL for the "25-hydroxy D" test. If the patient's test value is 31 ng/mL, the doctor's office will probably interpret this as "fine," but this is far from fine – at best, it is low-normal. It is considered deficient by many experts.

The California-based organization, GrassrootsHealth (http://www.GrassrootsHealth.net) recommends that the vitamin D level should be above 40 ng/mL. (I encourage you to study their website.) There are neurologists who even recommend a level between 80 and 100 ng/mL for patients with neurological symptoms.

In the case of vitamin B12 for another example, my lab used a reference range of 213-816 pg/mL for my serum B12 test (in other words, my test result would have to be below 213 to be considered deficient); but in Japan any result lower than 500 pg/mL is considered deficient and would be treated.

You must have the actual numbers and reference ranges to understand WHERE you are and HOW levels are changing from test to test.

[QTKT]

My initial blood labs did find Vitamin D deficiency, and I was put on Vitamin D pills. My second blood tests also showed low Vitamin D levels, which my doctors are monitoring. They did give me the actual numbers, but I was wondering why you said it's important to have them?
Thanks for your note about B-12 as well.

Your doctors are wise to be monitoring your vitamin D level in your blood – it seems that you have found some good ones (Hold on to good doctors!). Since people process vitamin D differently (some people will raise their blood level greatly on a certain dose, but others on the same dose will hardly see a change), the blood must be monitored.

The actual number results (and the reference range used by the lab) are important to know because numbers interpreted as "fine" or "normal" by one doctor can have a totally different meaning to another. Test results and reference ranges are controversial.

Take vitamin D for example, many labs use the reference range of 30-100 ng/mL for the "25-hydroxy D" test. If the patient's test value is 31 ng/mL, the doctor's office will probably interpret this as "fine," but this is far from fine – at best, it is low-normal. It is considered deficient by many experts.

The California-based organization, GrassrootsHealth (http://www.GrassrootsHealth.net) recommends that the vitamin D level should be above 40 ng/mL. (I encourage you to study their website.) There are neurologists who even recommend a level between 80 and 100 ng/mL for patients with neurological symptoms.

In the case of vitamin B12 for another example, my lab used a reference range of 213-816 pg/mL for my serum B12 test (in other words, my test result would have to be below 213 to be considered deficient); but in Japan any result lower than 500 pg/mL is considered deficient and would be treated.

You must have the actual numbers and reference ranges to understand WHERE you are and HOW levels are changing from test to test.

Wow! You sound very knowledgeable. And this is all great information to have. Thanks!