What now?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

What now?

Postby catlog » Tue Mar 07, 2017 12:13 am

I'm a 23 year old female and for the past (almost 6 weeks) I've had a variety of central nervous system symptoms, a lot of the time they're different, but the disorientation, lightheadedness, and 'head rushes' have been consistent. I get symptoms if I'm walking, sitting, lying or really any time. Additional symptoms include sensitivity to light, sound and smells, muscle and body weakness after 'head rush' symptoms, general body discomfort, sometimes tingling and pins and needles in arms and legs (one time my head went 'numb' and my vision went blurry but it only lasted 20 seconds or so), muscle cramping, difficulty concentrating and reading, difficulty with word recollection, back and neck pain, and shortness of breath. However, at this point its hard to distinguish what is a symptom and what is normal everyday pain. These symptoms aren't as common as the disorientation, but still come and go often.

I've had an MRI head with contrast and head and neck without, a CT, chest x-ray, echocardiogram, and EEG. I had a holter monitor for two days and am on my second week of wearing a zio patch, which allows me press a button and record when my symptoms occur. They tested me for a variety of things including autoimmune disease, inflammation, diabetes, B-12 deficiency, etc. Every test I've had has come back negative or normal. My neurologist told me to go back to my daily life, but I have symptoms every day and some are worse than others.

Today I was sitting down, having a conversation with a friend when I had a 'head rush' and was unable to speak or make words for about 10 seconds. It scared me enough that I immediately sought medical attention at the ER, they ran a physical neurological exam, but said everything was normal, he suggested it could be complex headaches but said after looking over my medical history that there wasn't much more they could do for me and that I should continue with my neurologist.

They often suggest stress or anxiety but when the symptoms began I was in a really good place, exercising 5 days a week, eating healthy, taking care of my mental health, etc. and hadn't been having anxiety attacks or signs of stressors. Anyways, my neurologist only told me that I had a 'beautiful brain' when going over my MRI results, and never suggested MS, so I brought it up on my own with the ER PA. He told me that since my MRI was clear and normal that I don't have MS, but I'm not sure what to believe at this point...
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Re: What now?

Postby NHE » Tue Mar 07, 2017 1:36 am

catlog wrote:They tested me for a variety of things including autoimmune disease, inflammation, diabetes, B-12 deficiency, etc. Every test I've had has come back negative or normal.


Hi Catlog,
Welcome to ThisIsMS. You mentioned that you were tested for B12 deficiency. Unfortunately, the standard range for "normal" that many laboratories use is much too broad. It usually ranges from 225-850 pg/mL B12. Some laboratory ranges I've seen go down as low as 180 pg/mL. The lower end of the ranges typically include people who actually B12 deficient. As such, it's best to know your actual test result rather than just accept being told that your level is normal. For anyone with neurological symptoms, B12 should be 600-1000 pg/mL.

In addition, you mentioned being on a Holter monitor. This is usually done for cardiac symptoms. A B12 deficiency can cause cardiac symptoms as it allows a toxic amino acid called homocysteine to build up. Were you tested for homocysteine?

Moreover, a full B12 panel also includes red blood cell folate and methylmalonic acid. If folate is low, it can cause elevated homocysteine. Low folate can also cause a B12 deficiency if it's low for long enough as a folate deficiency will inhibit the recycling of B12 back to the active methylated form. Methylmalonic acid is another biomarker for how your body is processing B12 and it's often elevated in a B12 deficiency so it should be checked as well.

It would also be good to know if you're taking any supplements and, if so, which ones. Some supplements, such as vitamin B6, can cause neurological symptoms if taken in high doses.
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Re: What now?

Postby vesta » Tue Mar 07, 2017 4:40 am

Greetings:

Consider that your "head rush" represents poor fluid circulation through the brain and you can overcome this with massage, TENS acupressure, fairly easily. Dr. Owiesy has proposed that smooth muscle spasms of the draining veins (i.e.) internal jugular veins send back-jets of blood into the brain which will eventually injure the tissue. Just try to speed up the blood flowing through the brain and see if that relieves your head congestion.

See here Under CCSVI Feb 12, 2017 "Dr. Owiesy's Superior CCSVI MS Solution".

Best regards, Vesta
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Re: What now?

Postby jimmylegs » Tue Mar 07, 2017 10:37 am

hi cat :) can you provide more detail re 'exercising 5 days a week, eating healthy' ?

what kind of exercise? what are typical breakfasts lunches dinners snacks and fluids on weekdays vs weekends? are you on any medications, including birth control?

if we look at just the very most common nutrient problem and one which is fairly routinely tested, do you know off hand or have in your files the daily recommended intake of dietary iron for your gender and age group? can you specify how are you achieving that from your diet? do you have a serum ferritin level on file?

magnesium's another one very often low due to systemic societal factors and readily lost through physical exertion. out of the 7-10 mg/kg per day body weight target for magnesium, do you personally aim for the 7mg or the 10mg end of that spectrum? how do those numbers line up with generic recommended daily intakes for your gender and age group? which are your preferred sources of dietary magnesium? do you find you need to top up with a supplement? are you in the habit of taking an athletic daily multi and if so, what brand are you using?

haha lots of questions will stop there for now :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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