having some MS-specific symptoms and MS-atypical symptoms

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having some MS-specific symptoms and MS-atypical symptoms

Postby gerardyu » Mon Mar 21, 2016 8:57 am

hi there i'm a 28 year old male, i started to feel unwell about 6 months ago. sorry for the lengthy post

My initial symptoms were:

-sharp and painful headaches that lasted for a second or so, had a few of these in a day. I don't usually have headaches in the pass. I rarely have these headaches these days
-back pains
-gastrointestinal problems- usually bloating and belching on an empty stomach, my stool have become rather soft and disintegrates easily when i flush. These symptoms have persisted throughout these 6 months. Had about 4 instances of diarrhea in the past 6 months. Did endoscopy, tested for h pylori eventually, both are unremarkable.
-during one of the nights i had tingling sensation on my right hand and then i experience pain when unclenching my right hand. This resolved in a day or so
- anxiety/panic attacks, palpitations
- face felt a little 'tight' on side. I still occasionally experience this, but not as often as before
-insomnia for a few consecutive days
-fatigue
-hand tremors
-muscles twitching
-weight loss as much as 4kg
-night sweats

2-3 months ago i had some new symptoms:

-weird sensations on my feet, sometimes it buzzes at a constant rhythm (feels as though a phone is vibrating underneath it), sometimes it feels like i'm stepping on the ground while wearing a wet sock
-following a sharp pain in my back which lasted for a few seconds, i experienced a mild lhermitte's sign, I feel some buzzing on my feet and hands (tend to be stronger on one side than the other) when i bend my neck. Did not feel anything running down my spine. Sometimes i feel pain on my left hand, when i bend my neck down. It kind of disappeared in a few days. I did a C-spine mri 2 weeks later which was negative
- urinary symptoms: some post void dribbling, and had this strange sensation of my bladder 'leaking' which happens briefly for a brief moment, but nothing actually leaks out. Did a urine test and culture, both were unremarkable
- visual symptoms: , i developed eye floaters, have occasional episodes of blurry vision which lasts at most a few seconds, sometimes if i rub my eyes, the blurry vision resolves , some minor eye pain-like headaches, does not seems to be related to eye movement. I also saw some bright spots in rare instances, in my peripheral vision which lasted for less than a second
- tingling lips, sometimes my lips feel 'spicy'

presently
- the weird sensations on my feet happened a lot more often
- palpitations, high pulse rate >100 bpm, even when i'm not doing anything
- heat sensitivity: sometimes after a hot shower i experience a little buzzing on my feet, sometimes after drinking hot soup, i feel a little dizzy, some exercises and vigorous activity can cause me to feel dizzy. These heat related symptoms got better eventually, at least for now.
- lhermitte's sign got a little worse, started to experience some buzzing/itch on my lower back, thighs
- still experience gastrointestinal problems - been taking probiotics, seems to help only a little.
-still having hand tremors which seems to get better later in the day
- muscles twitching again


Other tests/info:

-Thyroid: Free T4 levels was initially slightly elevated, but it fell to normal levels recently. TSH levels were consistently within range. Ultrasound showed inflammation on the right thyroid gland, but my endo did not think it was clinically significant
-Bloodwork: had slightly elevated WBC for a period of time, but it has gone down to the normal range in the most recent test (2 months ago). Normal platlets count. ESR consistently within normal range. liver and kidney function normal
-B12 > 500 . Also, I've been taking at least 1000mcg of b12 oral pills a day. I noticed that i have some dark reddish painless bruise like spots on my toes recently, when i increase my b12 daily dose , these spots seems to disappear. Strangely, some symptoms such as the tingling sensations and fatigue seems to improve when i take these b12 pills.
-sensory nerve conduction test: within normal range
-white coating on my tongue which happens a lot when i'm on an empty stomach

I've just done a brain, lumbar and thorax MRI last week. Brain: 2 tiny ,non-enhancing, non-specific lesions in the left anterior frontal lobe and left external capsule. Lumbar and thorax spine were clean. The neuro did not think it is MS and suggested that my symptoms may be 'psychogenic' . He suggested i 'wait and see'.

TLDR.. i've been experiencing some MS specific symptoms(lhermitte sign, heat related symptoms)that comes and goes, and some persistent atypical symptoms (gastro problems, weight loss). In light of the clinically unremarkable MRIs, I wonder if these symptoms can be explained by some nutritional deficiencies as a result of my gastro problem instead of MS? I've been taking multi-vitamin pils , they dont seem to help much though.
Last edited by gerardyu on Tue Mar 22, 2016 2:21 am, edited 1 time in total.
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby lyndacarol » Mon Mar 21, 2016 10:39 am

gerardyu wrote:Other tests/info:

...

-B12 > 500 . Also, I've been taking at least 1000mcg of b12 oral pills a day. I noticed that i have some dark reddish painless bruise like spots on my toes recently, when i increase my b12 daily dose , these spots seems to disappear. Strangely, some symptoms such as the tingling sensations and fatigue seems to improve when i take these b12 pills.
Welcome to ThisIsMS, gerardyu.

Obviously you are a very intelligent, organized young man. We appreciate the very thorough information you have shared with us. Most of us have no formal medical background, but we have opinions based on our individual experiences.

I am glad to see that your serum vitamin B12 level has been tested – I assume this was done before you began taking B12 supplements.

I see no mention of a vitamin D test… Has your GP order the 25-hydroxy D test? Since over 1/2 of the world's population is vitamin D deficient, I think this is important to measure. (Your symptoms are consistent with many conditions, including vitamin D deficiency.) Do not take vitamin D supplements before testing. The test is a relatively inexpensive blood test (about $50-$70 out of pocket, if insurance doesn't cover it – and most do). If this test has been done, I hope you will share the results with us.
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby gerardyu » Tue Mar 22, 2016 12:14 am

hi lyndacarol,

thank you for your reply and suggestion. I don't have a formal background in medicine too, i'm gotten all the information from the times that i've been googling about MS anxiously. I've been taking mutivitamin pills that contains 400IU of Vitamin d3, i wonder if that will affect my test? Also, i'm actually living in the equatorial region, so i doubt i will have problems with vitamin d. Neverthless i'll explore further on that.

i'm just worried that i may be part of the minority of MSers who will not have clinically significant MRI lesions for a long time, and there's nothing i can do about it
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby Scott1 » Tue Mar 22, 2016 1:36 am

Hi,

You have something going on but I think calling it MS is a fair way off. What infections have you been tested for?

Regards,
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby gerardyu » Tue Mar 22, 2016 2:17 am

My first urine test had elevated levels of WBC, RBC, crystals, i had a medical technologist friend to do a urine culture, and found out that i have the morganella morgani bacteria in my pee. However, a few weeks later, i did the urine test again, and all the parameters dropped to within the reference range. Bacteria count was insignificant

I've also been tested for h pylori twice (endoscopy histology, urea breath test) both negative.

my ESR has been consistently low, so i don't know if i may have an ongoing infection, but well my elevated WBC may have something to do with this. What other tests do you think i should go for?
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby lyndacarol » Tue Mar 22, 2016 6:32 am

gerardyu wrote:I've been taking mutivitamin pills that contains 400IU of Vitamin d3, i wonder if that will affect my test? Also, i'm actually living in the equatorial region, so i doubt i will have problems with vitamin d. Neverthless i'll explore further on that.
I have found recommendations that people not take supplements before a vitamin D test – supplements of vitamin D specifically, which are in a dose of at least 1000 IU, I assume. In my opinion, 400 IU D3 in your multivitamin is almost insignificant, compared to the estimated 10,000-20,000 IU outdoor workers along the equator get daily. I doubt that the amount of vitamin D3 in your multivitamin will skew D3 test results.

"Living in the equatorial region" sounds very positive for naturally making vitamin D in the skin… unless you work indoors and use sunscreen when outdoors; that is, you live a modern lifestyle, following the warnings of dermatologists to avoid the sun.

People living in Florida (subtropical region) can be vitamin D deficient; I assume the same is possible for those living in the equatorial region. It certainly wouldn't do any harm to have a serum vitamin D test.
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby gerardyu » Tue Mar 22, 2016 11:02 pm

thanks for the advice i'll look into that.

anyway, i just realised that i began to feel unwell shortly after having a wound infection from a surgery to remove a benign lump on my skin. I wonder if i could have a bacteria infection all this time that is causing these symptoms?
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby Scott1 » Wed Mar 23, 2016 1:15 am

Hi,

An infection is where I would be looking.
This note might help - https://en.wikipedia.org/wiki/Morganella_morganii

If you have one you could also have a co-infection.

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Re: having some MS-specific symptoms and MS-atypical sympto

Postby gerardyu » Fri Mar 25, 2016 10:48 pm

The weight loss continued, i'm suspecting a yeast infection because of my white tongue. I requested to do a blood culture test last wednesday, the doctor thought that i was a little hypochondriac, he don't think healthy people will have a yeast or bacterial infection in their blood stream, but still he ordered the test for me to 'ease my anxiety'. I'm getting the results this coming wednesday
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby Scott1 » Sat Mar 26, 2016 1:36 am

Hi,

I really do think you need to be reevaluated. A white tongue could be candida, it could be dehydration or it could be oral hairy leukoplakia. All of them need attention. If it is the last option it really indicates your immune system is exhausted.
You may need to change medical advisors if you aren't taken seriously.

Regards,
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby gerardyu » Tue Apr 26, 2016 11:41 pm

so i've seen a few doctors since my last post, and i haven't got any significant clinical findings until the current infectious disease specialist that i'm seeing now. I figured that i have not ruled out lyme disease yet, and my symptoms do resemble a lot like lyme disease especially the buzzing and vibrating sensation. I've repeated a bunch of serology tests and also done some new tests for other possible infections apart from lyme, they're all unremarkable. Turns out the white stuff in my tongue isnt candida or oral thrush after getting a few doctors to look at it.

The lyme tests in my country are very expensive considering that lyme disease is practically unheard of in my country. She actually did not recommend me to test for it especially since i did not expose myself to any lyme-related risks factors. Instead she suggested that i try out a cheaper way to test for lyme- and thats to take 2 weeks of doxycycline and see if my condition improve.

Also she has tested my vitamin d level. its 28.25, which is kind of borderline low and this is after taking 2000iu of D3 everyday for 2 weeks. So i'm prescribed to take 1000iu of D3 daily for the next months. i guess and i hope that it might just be a vitamin D issue.
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby lyndacarol » Wed Apr 27, 2016 7:01 am

gerardyu wrote:Also she has tested my vitamin d level. its 28.25, which is kind of borderline low and this is after taking 2000iu of D3 everyday for 2 weeks. So i'm prescribed to take 1000iu of D3 daily for the next months. i guess and i hope that it might just be a vitamin D issue.
From everything I have read your vitamin D level at 28 ng/mL is definitely low. I suggest that you thoroughly study the information at the GrassrootsHealth website (http://www.GrassrootsHealth.net). At the moment, their recommendation is 40-60 ng/mL. Some experts have recommended a range between 80-100 ng/mL for people with neurological symptoms.

Vitamin D is used by every cell, every system in the body. A longtime deficiency has probably caused your body to compensate; the "tank" will take a while to refill and correct the system/s affected – it is not a quick fix.
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby gerardyu » Sat Apr 30, 2016 6:10 am

lyndacarol, thanks for the useful information.

i'm prescribed to take 1000iu of vitamin d oral supplements. I think its a little too little? any suggestion on how much i should take?
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby lyndacarol » Sat Apr 30, 2016 6:54 am

gerardyu wrote:i'm prescribed to take 1000iu of vitamin d oral supplements. I think its a little too little? any suggestion on how much i should take?
GrassrootsHealth has the following chart to help a person decide the amount of vitamin D to take in order to raise his level. http://grassrootshealth.net/media/image ... single.pdf

The first step is to measure the serum 25-hydroxy D (which you have done: your level was 28 ng/mL). According to the chart above, it is estimated that 90% of adults would be able to raise your level (28 ng) to 60 ng/mL with 10,000IU/day of D3 (cholecalciferol). 10,000 IU-15,000 IU per day is a physiologic dose; this would be the daily amount received by an outdoor worker at the equator (or received by our equatorial East African ancestors); this exposure from sunlight will not lead to toxicity.

The important thing is not the D3 dose you take, the important thing is the level of 25-hydroxy vitamin D you have reached and maintain in your blood.

Retesting in 3-6 months will be necessary to confirm that you have reached the targeted amount of 60.
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Re: having some MS-specific symptoms and MS-atypical sympto

Postby gerardyu » Sun May 01, 2016 4:50 am

I noticed that some of my symptoms have worsened ever since i upped my D3 dose from 1000iu to 5000iu 2 days ago. Though i cant be sure that they are a result of the increased dose. My tremors got a little worse, having quite a bit of muscle related symptoms too. I read from some sources D3 supplementation will initially worsen some symptoms before they actually get better. Is that true?
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