Still undiagnosed after 2 years of symptoms.

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

Still undiagnosed after 2 years of symptoms.

Postby hyien » Fri Feb 17, 2017 4:46 am

Hi everyone,

I have described my symptoms a few weeks back in the following thread:
introductions-f20/topic28544.html

I'm still experiencing all those symptoms right now.
Lately (past 3 weeks), I've been experiencing my both knees and thighs getting really weak and cramped, and seems to be getting worse. :(
I went back to my neuro and he thinks I it is due to sleep apnea based on an early sleep study I had done (score 10.9), although that is a pretty mild score.

Does my neuro make sense to suggest sleep apnea, or should I get checked for other conditions?
Really confused and depressed now.
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Re: Still undiagnosed after 2 years of symptoms.

Postby Snoopy » Fri Feb 17, 2017 7:41 am

I understand you have had symptoms for 2 years and you're undiagnosed, but my confusion is why you believe you have undiagnosed Multiple Sclerosis. There can be many reasons for a person's symptoms and would not necessarily mean the person has MS. There is a diagnostic criteria for MS --- The Revised McDonald Criteria, if a person doesn't meet the criteria then a diagnosis of MS is usually not given.

Part of the diagnostic criteria requires all other possible causes for a person's symptoms must be ruled out. So if MS doesn't appear to be the cause of your symptoms then it's time to consider other conditions or reasons for symptoms. Just my opinion.
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Re: Still undiagnosed after 2 years of symptoms.

Postby lyndacarol » Fri Feb 17, 2017 8:08 am

hyien wrote:Does my neuro make sense to suggest sleep apnea, or should I get checked for other conditions?
Even in Singapore, a person could be vitamin D deficient. (Such a deficiency can result in the symptoms you describe, even the connection to sleep apnea.) If you have not had the vitamin D blood test called "25-hydroxy D," it would be a good idea to ask your doctor to order it. Also, request your own copy of the test result so that you have the actual number.

http://library.med.utah.edu/kw/ms/mml/ms_worldmap.html


Low vitamin D status despite abundant sun exposure. (2007)
N Binkley, R Novotny et al.
http://www.ncbi.nlm.nih.gov/pubmed/17426097

Conclusions: These data suggest that variable responsiveness to UVB radiation is evident among individuals, causing some to have low vitamin D status despite abundant sun exposure. In addition, because the maximal 25(OH)D concentration produced by natural UV exposure appears to be approximately 60 ng/mL, it seems prudent to use this value as an upper limit in prescribing vitamin D supplementation.


Severe vitamin D deficiency in Hawai'i: a case report. (2006)
M Bornemann
http://www.ncbi.nlm.nih.gov/pubmed/16602611

Severe vitamin D deficiency would appear unlikely to occur in Hawai'i, which has abundant year-round sun exposure. This case report of a woman with no obvious risk factors for vitamin D deficiency who was found to have severe vitamin D deficiency and coexisting primary hyperparathyroidism should alert health care providers to be more aware of vitamin D deficiency in Hawai'i. .
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Re: Still undiagnosed after 2 years of symptoms.

Postby hyien » Fri Feb 17, 2017 5:03 pm

Snoopy wrote:I understand you have had symptoms for 2 years and you're undiagnosed, but my confusion is why you believe you have undiagnosed Multiple Sclerosis. There can be many reasons for a person's symptoms and would not necessarily mean the person has MS. There is a diagnostic criteria for MS --- The Revised McDonald Criteria, if a person doesn't meet the criteria then a diagnosis of MS is usually not given.

Part of the diagnostic criteria requires all other possible causes for a person's symptoms must be ruled out. So if MS doesn't appear to be the cause of your symptoms then it's time to consider other conditions or reasons for symptoms. Just my opinion.


I guess I'm being paranoid, but most of my symptoms are similar to what MS patients have, so that lead me to believe MS might be a possible cause.
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Re: Still undiagnosed after 2 years of symptoms.

Postby hyien » Fri Feb 17, 2017 5:06 pm

lyndacarol wrote:
hyien wrote:Does my neuro make sense to suggest sleep apnea, or should I get checked for other conditions?
Even in Singapore, a person could be vitamin D deficient. (Such a deficiency can result in the symptoms you describe, even the connection to sleep apnea.) If you have not had the vitamin D blood test called "25-hydroxy D," it would be a good idea to ask your doctor to order it. Also, request your own copy of the test result so that you have the actual number.

http://library.med.utah.edu/kw/ms/mml/ms_worldmap.html


Low vitamin D status despite abundant sun exposure. (2007)
N Binkley, R Novotny et al.
http://www.ncbi.nlm.nih.gov/pubmed/17426097

Conclusions: These data suggest that variable responsiveness to UVB radiation is evident among individuals, causing some to have low vitamin D status despite abundant sun exposure. In addition, because the maximal 25(OH)D concentration produced by natural UV exposure appears to be approximately 60 ng/mL, it seems prudent to use this value as an upper limit in prescribing vitamin D supplementation.


Severe vitamin D deficiency in Hawai'i: a case report. (2006)
M Bornemann
http://www.ncbi.nlm.nih.gov/pubmed/16602611

Severe vitamin D deficiency would appear unlikely to occur in Hawai'i, which has abundant year-round sun exposure. This case report of a woman with no obvious risk factors for vitamin D deficiency who was found to have severe vitamin D deficiency and coexisting primary hyperparathyroidism should alert health care providers to be more aware of vitamin D deficiency in Hawai'i. .


I don't think I've had that specific test done, I'll ask my doc.
Thanks.
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Re: Still undiagnosed after 2 years of symptoms.

Postby LizardKing » Sat Feb 25, 2017 10:33 pm

Two years isn't so bad, I am on year 24 of whatever I have and it's been getting worse and worse and still no answers.
At this rate I might get diagnosed on the autopsy table.
Lots of studies about MS and vitamin D deficiency but you will be asked about that repeatedly on this forum.
Does a deficient vitamin D test get you a diagnosis?
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Re: Still undiagnosed after 2 years of symptoms.

Postby NHE » Sun Feb 26, 2017 2:17 am

LizardKing wrote:Does a deficient vitamin D test get you a diagnosis?


I don't think so. It's not in the revised McDonald criteria.

http://www.nationalmssociety.org/For-Pr ... g-Criteria
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Re: Still undiagnosed after 2 years of symptoms.

Postby hyien » Wed Mar 08, 2017 7:03 am

Sorry for the sidetrack, but do ms patients usually suffer from positional vertigo? Just started experiencing the world spin when sitting up from lying flat.
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Re: Still undiagnosed after 2 years of symptoms.

Postby jimmylegs » Wed Mar 08, 2017 7:23 am

three possibly relevant posts oct & dec 2016, jan 2017
http://bit.ly/2neyfE3
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Still undiagnosed after 2 years of symptoms.

Postby hyien » Wed Mar 08, 2017 8:16 am

Hi jimmy
Were those instances of vertigo positionally triggered?
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Re: Still undiagnosed after 2 years of symptoms.

Postby jimmylegs » Wed Mar 08, 2017 9:04 am

short answer yes. long answer read the posts esp natural-approach-f27/topic18559-975.html#p244300
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Still undiagnosed after 2 years of symptoms.

Postby hyien » Thu Mar 09, 2017 8:11 pm

OK finally got the hydroxy-D test done.
Was told it was low (9).
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Re: Still undiagnosed after 2 years of symptoms.

Postby NHE » Thu Mar 09, 2017 8:42 pm

hyien wrote:OK finally got the hydroxy-D test done.
Was told it was low (9).

Yes, that's deficient. You want 25-hydroxy D to be around 50 ng/mL. Are you taking D3 supplements? Along with D3, take some magnesium, e.g., about 200 mg magnesium as magnesium glycinate or magnesium citrate. Take it at a time separate from your D3. I take my magnesium in the morning and my D3 in the evening with dinner.
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Re: Still undiagnosed after 2 years of symptoms.

Postby hyien » Thu Mar 09, 2017 9:06 pm

NHE wrote:
hyien wrote:OK finally got the hydroxy-D test done.
Was told it was low (9).

Yes, that's deficient. You want 25-hydroxy D to be around 50 ng/mL. Are you taking D3 supplements? Along with D3, take some magnesium, e.g., about 200 mg magnesium as magnesium glycinate or magnesium citrate. Take it at a time separate from your D3. I take my magnesium in the morning and my D3 in the evening with dinner.


Doc will be prescribing me some supps, not sure what yet.
I live in the tropics, kind of surprising I have a vit D deficiency.
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Re: Still undiagnosed after 2 years of symptoms.

Postby jimmylegs » Fri Mar 10, 2017 6:50 am

you don't absorb d3 from the sun properly, if you have insufficient cofactors in your system. magnesium is a key cofactor for achieving healthy serum d3 levels from cutaneous synthesis.

recall previous (jan) mention of mag re your twitching and insomnia symptoms introductions-f20/topic28544.html#p245204
your mention of cramping above also suggests a magnesium issue.

if you take only d3 to correct a deficiency, when the situation may in part be a marker of magnesium deficit, you can expect any symptoms related to pre-existing low mag to get worse.

safest course would be to ensure daily magnesium requirements are met. these were covered previously in the link above. are you now going for 10mg per kg body weight per day of magnesium intake from food? how many mg per day does that mean for you? if approx 800 mg per day is needed, which foods are providing that intake in your case? see this related review of daily intakes (starts about halfway down post)
undiagnosed-f54/topic28751.html#p246375

you can do the same with the food info you list earlier. google your food choices plus magnesium mg in one search, and then you'll likely find yourself presented with a choice re serving size.

if it turns out you're getting a quarter of what you're supposed to per day, that helps explain the low d3 level and provides a starting point for action.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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