Confusion, hesitancy, ms

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Confusion, hesitancy, ms

Postby qweqwe1 » Mon Jul 25, 2016 9:58 am

Hello everyone,

I am a 23 years old university student, since i was 20 my eyes got red with a gray scale near my iris(like uveitis) from time to time. None of the 4 eye doctors i visited could diagnose my disease, they just told me it was probably allergic and eye drops they gave to me helped me to get better. I had some minor balance losses all my life (and a walking ataxia that can just be identified by a neurologist recently) With advice of a medicine student friend i visited a neurologist, brain mri and lumbar puncture and other tests followed, resulting in sad news, many(30'ish) inactive lesions(visible with t1) on my brain and spinal cord but no active ones ,optic neuritis positive and lumbar puncture results supporting ms diagnosis.
I am on copaxone for 6 months, only abnormality resembles an ms attack is my red eyes(uveitis maybe, per 2-3 months lasting 2-3 days). Still no additional ailment visible, which makes me suspect of a false diagnosis-since my doctors was not sure about anything(maybe not ms but a rheumatological disease-rheumatological diseases runs through my family-).
Does anyone have a similar disease story like mine? If yes, could you please share your experience with me? If not, any advices would be appreciated.

Sorry for my grammar mistakes by the way, english is not my native language.

Thanks in advance.
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Re: Confusion, hesitancy, ms

Postby lyndacarol » Mon Jul 25, 2016 11:57 am

qweqwe1 wrote:I am a 23 years old university student, since i was 20 my eyes got red with a gray scale near my iris(like uveitis) from time to time. None of the 4 eye doctors i visited could diagnose my disease, they just told me it was probably allergic and eye drops they gave to me helped me to get better. I had some minor balance losses all my life (and a walking ataxia that can just be identified by a neurologist recently) With advice of a medicine student friend i visited a neurologist, brain mri and lumbar puncture and other tests followed, resulting in sad news, many(30'ish) inactive lesions(visible with t1) on my brain and spinal cord but no active ones ,optic neuritis positive and lumbar puncture results supporting ms diagnosis.
I am on copaxone for 6 months, only abnormality resembles an ms attack is my red eyes(uveitis maybe, per 2-3 months lasting 2-3 days). Still no additional ailment visible, which makes me suspect of a false diagnosis-since my doctors was not sure about anything(maybe not ms but a rheumatological disease-rheumatological diseases runs through my family-).
Does anyone have a similar disease story like mine? If yes, could you please share your experience with me? If not, any advices would be appreciated.

Sorry for my grammar mistakes by the way, english is not my native language.
Welcome to ThisIsMS, qweqwe1. Do not apologize for your English; it is excellent! I did not realize that you were not a native English-speaker, until you told us so.

MS is a diagnosis of exclusion, only to be considered after other more likely conditions have been ruled out. It is possible you received a false diagnosis, if a thorough investigation and thorough testing were not done. The symptoms of MS are common to many conditions!

Since vitamin D deficiency is common around the world and since vitamin D deficiency can lead to neurological symptoms, such as yours, I hope you have had the 25-hydroxy vitamin D test. (If your GP or neurologist has not ordered this simple blood test, it may be available to you through your university health center. Please request your own copy of the test results in order to have the actual numbers.) If you have the results for the "25-hydroxy D" test, will you share the numbers with us?
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Re: Confusion, hesitancy, ms

Postby qweqwe1 » Tue Jul 26, 2016 11:53 am

lyndacarol wrote:
qweqwe1 wrote:I am a 23 years old university student, since i was 20 my eyes got red with a gray scale near my iris(like uveitis) from time to time. None of the 4 eye doctors i visited could diagnose my disease, they just told me it was probably allergic and eye drops they gave to me helped me to get better. I had some minor balance losses all my life (and a walking ataxia that can just be identified by a neurologist recently) With advice of a medicine student friend i visited a neurologist, brain mri and lumbar puncture and other tests followed, resulting in sad news, many(30'ish) inactive lesions(visible with t1) on my brain and spinal cord but no active ones ,optic neuritis positive and lumbar puncture results supporting ms diagnosis.
I am on copaxone for 6 months, only abnormality resembles an ms attack is my red eyes(uveitis maybe, per 2-3 months lasting 2-3 days). Still no additional ailment visible, which makes me suspect of a false diagnosis-since my doctors was not sure about anything(maybe not ms but a rheumatological disease-rheumatological diseases runs through my family-).
Does anyone have a similar disease story like mine? If yes, could you please share your experience with me? If not, any advices would be appreciated.

Sorry for my grammar mistakes by the way, english is not my native language.
Welcome to ThisIsMS, qweqwe1. Do not apologize for your English; it is excellent! I did not realize that you were not a native English-speaker, until you told us so.

MS is a diagnosis of exclusion, only to be considered after other more likely conditions have been ruled out. It is possible you received a false diagnosis, if a thorough investigation and thorough testing were not done. The symptoms of MS are common to many conditions!

Since vitamin D deficiency is common around the world and since vitamin D deficiency can lead to neurological symptoms, such as yours, I hope you have had the 25-hydroxy vitamin D test. (If your GP or neurologist has not ordered this simple blood test, it may be available to you through your university health center. Please request your own copy of the test results in order to have the actual numbers.) If you have the results for the "25-hydroxy D" test, will you share the numbers with us?


Well, thank you for all that/ and about my english i'm happy to hear that^^.
I had 25-Hydroxy vit-D test in january, result was 8,14 µg/L. Doctor said reference values were around 10-60 µg/L and told me to use vitamin-D support for 2 months. I trust my doctor he is one of the best my country has to offer and am nearly sure that doctor did all tests required for ms diagnosis and they all were supporting ms diagnosis. The thing is that he also told me that my disease has an 'unusual look' and he is suprised that i don't have much symptoms even though number of inactive lesions were pretty high and advised me to use copaxone as a measure of precaution- which are the reasons of my suspicions. So i thought i may find another patient with similar disease story here and know what to expect.
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Re: Confusion, hesitancy, ms

Postby NHE » Tue Jul 26, 2016 5:01 pm

qweqwe1 wrote:I had 25-Hydroxy vit-D test in january, result was 8,14 µg/L. Doctor said reference values were around 10-60 µg/L and told me to use vitamin-D support for 2 months.

It's best to have your vitamin D3 levels up around 50 µg/L. Vitamin D3 is best absorbed with a large meal that contains some fat.

Another important test is vitamin B12 as a deficiency can cause a host of neurological symptoms. Do you know if you've had your B12 levels checked and what the results were?
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Re: Confusion, hesitancy, ms

Postby qweqwe1 » Wed Jul 27, 2016 10:47 am

NHE wrote:
qweqwe1 wrote:I had 25-Hydroxy vit-D test in january, result was 8,14 µg/L. Doctor said reference values were around 10-60 µg/L and told me to use vitamin-D support for 2 months.

It's best to have your vitamin D3 levels up around 50 µg/L. Vitamin D3 is best absorbed with a large meal that contains some fat.

Another important test is vitamin B12 as a deficiency can cause a host of neurological symptoms. Do you know if you've had your B12 levels checked and what the results were?

Yeah, also checked that too. It was low at the beginning of treatment(don't know how much), but i used vitamin B12 support for that after. It is around 340,7 pg/ml according to last test. You think just lack of some vitamins may create that many lesions?
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Re: Confusion, hesitancy, ms

Postby orphansparrow » Wed Jul 27, 2016 2:15 pm

Hi there.

I don't know a lot about MS, but I thought I'd chime in.

My husband was just diagnosed. His only symptoms were that of balance, some numbness in his feet, and very mild optic neuritis in both eyes. All this was pretty mild.

His MRI showed that his MS is advanced with lesions pretty much covering all of the white matter in his brain, and spine. The neurologist was pretty surprised that he had never had any severe symptoms. She put him on Rebif. This is our first week with this drug.

It seems like MS can take a wide variety of forms.
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Re: Confusion, hesitancy, ms

Postby NHE » Wed Jul 27, 2016 3:22 pm

qweqwe1 wrote:Yeah, also checked that too. It was low at the beginning of treatment(don't know how much), but i used vitamin B12 support for that after. It is around 340,7 pg/ml according to last test. You think just lack of some vitamins may create that many lesions?

That's still pretty low. You want B12 to be at least 500 pg/mL. Try a sublingual methylcobalamin supplement, 1000 µg/day ought to do it though sometimes I take 3-5. Low B12 can cause lesions on both the spinal cord and in the brain. You may want to look over the references cited in the following topic. natural-approach-f27/topic24857.html
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