Please help.. I'm at a loss :(

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

Please help.. I'm at a loss :(

Postby elgeetina » Mon Jan 13, 2014 10:47 am

Hi there, I'm a 24 year old female with a series of issues that I've only been seen for one at a time with no results. My family doctor refuses to take me seriously, stating I'm "too young" and since I'm female I'm "probably jsut depressed"...I can tell you up front I'm the farthest from depressed, little to no anxiety, I'm a crazy happy upbeat person :) However I am being brought down by the following issues seriously affecting my quality of life (sorry for the long list, I appreciate your time and feedback!!). I am aware mild forms of MS also don't always show up on CTs or MRIs, but this is crippling and Celiac has been ruled out. I doubt fibromyalgia because the pain isn't the main issue, mainly muscle paina dn weakness/cognitive/dizziness that's affecting me the worst.

- Migraines from early teens, increasing in frequency to about monthly, slight headaches almost daily (advil)
- Had CT for these in ’10 & ’11 as they were extreme, non-contrast and nothing showed
- Recently starting to get random spasms with them
- Periods of near-constant dizziness (not vertigo) started in ’09, lasting for weeks/month+. Goes away and comes back
- Recently dizzy periods worsening and accompanied by unexplained, daily nausea
- The nausea is HORRIBLE. I rarely vomit, but it is literally from the moment I wake up to go to bed
- Inner-ear and cerebellar problems ruled out by ENT and audiology
- ’09 started getting sharp pains down neck and back, especially during dizzy times
- Numbness, stiffness esp. Very easy to lose feeling/circulation. I get very cold, especially hands and feet
- Often get sensation of skin being very sore to touch, tender like I’ve been beaten up
- Feel very fatigued, increasingly. Very happy and energetic mentally but body stopping me
- Started getting wobbly at work and in school clinical
- Camping 2012- was very dizzy and tired/nauseated and woke up one morning constantly vomiting, whole body slowly went numb up to my face- undiagnosed
- Summer 2013- first time working hard out of school. Really noticed an increase in wobbly/weakness/dizziness. Collapsed one day from sheer weakness/exhaustion. Muscles all cramped and spasmed again. Cardiology found two murmurs and bedside echo showed leaky valves.
- Formal echo showed nothing indicating a reason for symptoms. Carotid bruit to be investigated. Was told to see neurologist but cardiology did not give referral
- Started thinking heart palpitations and chest pain may be nerve pain (considering left-sided issue)
- Recently strength has decreased and mild tremor. Severe migraines over Christmas with even worse nausea and dizziness than before, pain and difficulty lifting left arm (weakness/pain)
- Feel cognitively “foggy” when symptoms exacerbate, difficulty concentrating and memory lapses (will repeat myself or not notice what someone is saying, short term memory sucks)
- Jerky movements, just slight, in hands/face/feet (keep dropping things), flinging pens
- My legs get very weak, they begin to bow at times
- stress urinary incontinence when symptoms flare up
- Eyesight is depleting rapidly, not as sharp
- Decrease in symptoms for several months but still very fatigued and weak with random shooting pains, dizziness does not entirely go away. Lately the pain is more muscular and long-lasting
- Over Christmas, increasing extreme dizziness with constant whooshing sound in head. Couldn’t lay flat as it felt terrible. Accompanied by string of extreme migraines.
- Again very lively and happy but this is putting a damper on my spirits and seriously affecting work

Any feedback on if this could be MS, I know you can't diagnose on here but honestly, I just want SOMETHING to go on. I'm tired of being told it's all in my head...
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Re: Please help.. I'm at a loss :(

Postby lyndacarol » Mon Jan 13, 2014 4:24 pm

Welcome to ThisIsMS, elgeetina.

So many of your symptoms seem to fit with Celiac Disease, but you stated that "Celiac has been ruled out." I am curious to know how this was done. Which of the following were used?

With blood tests – People with celiac disease have abnormally high levels of certain antibodies. The Celiac Disease Center at Columbia University recommends the following set to maximize the chance of getting accurate results:

Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA
Total IgA level

Intestinal Permeability Assessment - This test is administered by a healthcare professional, and it involves drinking a liquid solution of mannitol and lactulose. Urine is then collected over a 6-hour period. If high levels of both molecules are found, it indicates a leaky gut condition. If low levels of both molecules are found, it indicates general mal-absorption of all nutrients.

Intestinal Biopsy to determine the condition of the villi at several (6) locations.

Diagnosing CD by Video Capsule Endoscopy (VCE): ... diagnosis/
Last edited by lyndacarol on Mon Jan 13, 2014 6:02 pm, edited 1 time in total.
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Re: Please help.. I'm at a loss :(

Postby jimmylegs » Mon Jan 13, 2014 5:46 pm

hi elgeetina :) welcome to the forum!

for some context, can you possibly tell us about dietary habits and preferences, and ideally post (or send to me via private message) a food/fluid diary for a typical three day period? also can you provide some background info on your activity level, general fitness, and so on?

maybe we can find some nutritional gaps that could link up to some of those symptoms.
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Re: Please help.. I'm at a loss :(

Postby elgeetina » Mon Jan 13, 2014 5:50 pm

I've had all the blood tests, as well it doesn't line up with the symptoms coming in waves, and lasting weeks then suddenly disappearing for a the most part. It has nothing to do with what/when I eat or if I eat/drink at all
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Re: Please help.. I'm at a loss :(

Postby elgeetina » Mon Jan 13, 2014 5:52 pm

I eat very well, all food groups, avoid fast food, drink plenty of water
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Re: Please help.. I'm at a loss :(

Postby alex22 » Tue Jan 14, 2014 7:57 am

I can't help you because I suffer just like you and I'm still undiagnosed but I wonder if you had ANA test.
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Re: Please help.. I'm at a loss :(

Postby jimmylegs » Tue Jan 14, 2014 6:58 pm

hi again, which blood tests exactly have you had? curious if the docs have hit on all the nutrients of concern for ms patients (they tend to miss a few of the important ones)
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