This Is MS Multiple Sclerosis Knowledge & Support Community

Hello all.

50yo male, otherwise good health. (you'll laugh at that when you read the list below)
n. euro decent. no familial history of MS
things are piling up so i'd like to give you a rundown and see what you think.

-last july, one year ago the left side of my tongue went numb. i got kind of a burning mouth sensation on the left side only. it has gotten much better, but has no subsided.
-vision started going to hell at age 40.5, figured it was just age, but after chatting with mom 4 months ago who was just diagnosed glaucoma, i realized my crap vision was really double vision in my right eye only. a bit blurry in left eye. the conditon gets worse and subsides but never resolves completely. i have a large grey spot that is usually in the same place right eye, but sometimes moves. someone on here wrote "vaseline"" vision...that's the best descriptor of what the rest of it looks like, but this particular thing comes and goes, while the double visiona dn grey spot seem to be there all the time. I can see absolutely fine at a distance of over 4 feet, save the grey spot and vaseline vision that comes and goes.
-got a nice big hug today. which reminds me, this has been going on for a couple decades. maybe 4 times a year. starts under my left shoulder blade and usually (within seconds) encompasses chest and i can't breathe, tightness, sharp stabbing pain through both sides of chest. if i do really slow painful deep inhalation it will gradually let go at leave me with a sore back. if i go to the quack-a-practor and get a crack adjustment for mid back it gets better....until 3-4 months goes by and the next hug shows up. sometimes the pain relieves and does not lock up my back...so i can save the 50 bucks on the spine cracking.
-thought the hug was indegestion until Dr. mentioned MS a few months ago and i started reading about this. the indigestion thing was always fore-front in my mind...at age 27 i had a "blowout" after eating some wheat noodles and i suffered what the called IBS and all the tests, xrays and scopes i could take until i gave up. at age 45, i found out that gluten intolerance could set in at any age...i had never considered this because i ate wheat all my life and it never? bothered me until IBS at 27...i gave up coffee, booze, nuts, milk all kinds of things and never considered wheat...BTW the 20 dr.s i met for the IBS never did either.
so... i'm not celiac (been tested) but if i eat wheat, i bloat up, gass up and have diahorrea within 60 minutes. until empty.
-started bitching at DR in February of the bone crushing fatigue. he had me on low dose codeine, to control the IBS stopped taking it. no difference.
-have had an irritable bladder for a number of years. tried smooth muscle relaxers, they help a bit. tylenol helps for sure. this symptom comes and goes, some times weeks and months are good, or bad. feels like i gotta piss all the time, especially when bladder is empty. if i can withstand the irritation and go long enough (say 3 hours) for it to fill, it actually reduces the irritation and the urgency feeling. stress/anxienty makes this much, much worse. (like sitting on an airplane on the tarmac, waiting for take off and they don't want you walking to the bathroom...
-did i mention the bone crushing fatigue? turns out i have low T (5 out of a possible 30, normal is 15-20). iron levels were slightly elevated, but maybe due to diet was at 500.
-While on blood, CBC is good, liver enzymes are good and immuno A is good.
-the low T seems to be secondary hypogonadism, as the precurser FSH and LH are normal. (slightly high, but normal)
-good libdo and interest, but lack of energy.
-easily irritated. people close to me tell me i have "changed" in the last year. indecisive, apathetic, a bit needy, easily emotional both directions...get very mad very fast and get sad and weepy at movies and such, where i never used to. stupid things like what to have for lunch. chicken? beef?....can't make up my mind until say screw it, wasn't really hungry anyway and give up on the decision.
-tingleing in extremeties for a looong time (since my 20's), always gave that up to being 6'6" and having hands and feet along ways from my heart. back always gave me trouble, position can trigger tinglies in any given limb.
-confusion, fogged in...bad earlier this year but getting better now thank god. man that is horrible.
-left arm jumps sometimes just for funzies.
-left foot seems to be catching on things lately
-get a bit motion sick now, never used to.
-tons of joint pain gave that all up to a well mis-spent youth, too many birthdays, mild arthritis (according to Dr,) it's transient, one joint then another...
-pretty much got to hold a gun to my head to put my feet on the floor after a sitting for a while at the end of the day, once i'm moving the pain goes away. ok. in the morning.
- most recent thing? a red, itchy hot rash in my moustache, and close to nose on cheeks. almost like a cold sore but not oozy...maybe more like psoriasis...but that would be a new thing. responds to steriods and gets better. respondes to "clearasil". does not respond to anti bacterial or anti viral. have not tried an anti fungal.

so that is pretty much all of it. this stuf comes and goes and has gotten worse as i age, and really the worst of it was jan-march this year with the mental/emotional disturbance and the fatigue...the rest of the crap i just chalked up to "shit happens" because it always gets better (well except for vision and the tongue thing seem to have staying power) the fatigue could be the low T, but now i'm thinking that the low T is a result of lesions on hyppocampus or pituatary screwing with the FSH and LH precursors.

so...results of the high res MRI next monday and i'm a bit stressed about the results and unsure of what the future holds if it comes back with a positive MS or a positive pituatary tumor. I'm pretty sure something has gone awry in my noggin, just not sure what, or how i will respond to the "news"

i never would have considered MS until the Doc mentioned it, and i started doing a bit of reading. it explains pretty much everything i experience, but dammit, MS explains pretty much every ailment known to man...from what i can tell.

Welcome to ThisIsMS Juan. An MS diagnosis is a diagnosis of exclusion meaning that there are several conditions which can produce neurological symptoms and mimic MS. These must be tested for and excluded from the diagnosis prior to settling on MS. One of these other conditions is a vitamin B12 deficiency which can cause a plethora of neurological symptoms and also cause lesions in the brain and on the spinal cord. Do you know if you've had blood tests to check for a B12 deficiency? These usually include B12, homocysteine, red blood cell (RBC) folate and methylmalonic acid (MMA).

the only bloodwork i know of is CBC, iron (serum and a second one), immnoA, Testosterone (free) and LH, FSH. liver enzyme.
unless it's in one of these, then no...which were all normal, save a high/normal iron and Low T.

i'll certainly bring up the vitamin things you noted on monmday when i go for MRI results.

frankly, i eat like a king an have most of my life (save the odd mcdonalds) all my food is whole and fresh and varied. i'm fortunate to live in the farming part of Canada and enjoy fruit, nuts, meat and veg regularly. about the only thing i don't eat is wheat and milk, but i do get into fresh cheeses. slightly overweight at 232lbs, but i am 6'6" tall, so it carries well.

are you saying with a top notch diet i can still be deficient? (i don't take suppliments)

still in the grips of the hug this morning, so off to the quackopractor. i do remember (today) thinking over the years this was a pinched nerve or "out of line" vertabrae, because the bone cruncher doc really helps.

another Q: any research on low T and MS? i have seen a smattering of info...It seems to me that if MS responds to steroids, and testosterone is a steroid, that having low T could trigger the flare up...or the disease could be causing the low T...either way the two things of a noticible uptick in symptoms and the low T seem to be more than co-incidental to me. (or at least to me, in my case anyway)

any links to current info on this would be appreciated.

i'm also concerned the Doc's delaying treating the low T until seeing MRI and getting me into see a endocrinologist (which could take who knows how long) may allow the flare up to do more damage if gone untreated. (assuming there is an interconnection)

Hi Juan,

What is referred to as the "MS Hug" is muscle spasms of the intercostal muscles. This symptom and any other symptom that are considered symptoms of MS are also symptoms of other conditions, medication side effects, vitamin/mineral deficiencies and mental health issues. All other causes for a person's symptoms need to be ruled out as part of the diagnostic process (McDonald Criteria).

Has your vision problems been evaluated by an Ophthalmologist? If not that would be my suggestion.

Joint pain, as you are describing, is not MS. MS does not cause rashes.

juan wrote:50yo male, otherwise good health. (you'll laugh at that when you read the list below)
n. euro decent. no familial history of MS
things are piling up so i'd like to give you a rundown and see what you think.
…
so... i'm not celiac (been tested) but if i eat wheat, i bloat up, gass up and have diahorrea within 60 minutes. until empty.
…
so that is pretty much all of it. this stuf comes and goes and has gotten worse as i age, and really the worst of it was jan-march this year with the mental/emotional disturbance and the fatigue...

i never would have considered MS until the Doc mentioned it, and i started doing a bit of reading. it explains pretty much everything i experience, but dammit, MS explains pretty much every ailment known to man...from what i can tell.

Welcome to ThisIsMS, juan.

As Snoopy said, your symptoms are common to many conditions; MS is just one possibility (and since there is no definitive test for MS, it can only be considered after the other more likely possibilities have been ruled out).

It is also possible that not all your symptoms have one single cause; there may be different causes for different symptoms. For example, you have already discovered that gluten sensitivity does not have to be full-blown celiac disease before it can cause symptoms.

Numbness/tingling in the extremities (as you describe) is another common symptom in many conditions. It is the textbook definition of "peripheral neuropathy." In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

In my opinion (I have no medical background), you need to be seeing a good GP (who enjoys being a "disease detective") to discuss a written list of your symptoms and to develop a game plan (outline a testing program to eliminate possibilities, one by one).

Since vitamin D deficiency can cause neurological symptoms, I suggest you request a simple (and inexpensive AND usually covered by insurance) vitamin D blood test (the "25-hydroxy D" test) from your GP – actually, any doctor can order it. This test is not routinely done; it must be specifically requested. Also, request your own copy of any test results – is important to have the actual numbers. (Your northern European descent, age, living in Canada and symptoms – which worsened in Jan-March, when NO Vit D can be made in Canada– are risk factors for vitamin D deficiency, which is now the most common nutrient deficiency. By the way, diet cannot supply vitamin D.)

Another very common nutrient deficiency is for vitamin B12, (which also causes neurological symptoms). As NHE stated, thorough, initial testing for vitamin B12 deficiency should include 1) the serum B12 test, 2) red blood cell (RBC) folate test, 3) a serum homocysteine test, and 4) a methylmalonic acid test. These tests must also be specifically requested – they're not part of standard blood test panels.

I think you will find most symptoms in this documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their second book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)

A magnesium deficiency is also very common and can cause neurological symptoms – this is also easily ruled out by a blood test.

In my opinion, the probability that you have MS is much lower than the probability of another cause for your symptoms. Please let us know how your investigation goes.

yes, been to opthamologist/eye surgeon/specialist dude. he spent a 1/2 hour on my right eye alone, and said it is perfectly healthy...which is nice to know...now if i could just see out the damn thing, it would be great!

i'm not sure if he checked glaucoma, i don't remember the puff test, but i think his assistant used a touch test thingy...he was thorough, hard to recall all he did. i'm gonna check with doc on monday for that, he has a full write up on the eye doc.
my mom's double vision is the only thing that makes me entertain this idea, she describes it the same as i experience. i don't have any eye pain tho...but she does/did. she is also 83 using some eye drops now, that seem to help her, which is nice

the mild rash is new, the joint pain old...just being thorough on my explaination, but it is nice to know they are not related to MS in your experience. thanks for the info snoop.

i think i'm convinced to suppliment some vitamins. they are safe enough and if i don't need them i guess i'll just have some expensive pee. i wonder if i should ask for the blood tests noted above before supplimenting, to get a better read?

i just want to do whatever i can...in hopes of staving off whatever this is from getting worse.

posting with lyndacarol, on one hand i hope you are right, who wants MS? on the other, i'm frustrated for an answer and the health care in Canada (while it may be free, is slower than the second coming) whatever it is, it certainly is killing me slowly which is nice...just not been a great year so far for robust health. thanks for your input.

juan wrote:the indigestion thing was always fore-front in my mind...at age 27 i had a "blowout" after eating some wheat noodles and i suffered what the called IBS and all the tests, xrays and scopes i could take until i gave up. at age 45, i found out that gluten intolerance could set in at any age...i had never considered this because i ate wheat all my life and it never? bothered me until IBS at 27...i gave up coffee, booze, nuts, milk all kinds of things and never considered wheat...BTW the 20 dr.s i met for the IBS never did either

Take a look at this article from Medical News Today, December 2015:

"Low vitamin D levels associated with irritable bowel syndrome"

http://www.medicalnewstoday.com/articles/304361.php

This statement may have particular relevance to your case: "Out of 51 patients with IBS, 82% exhibited insufficient vitamin D levels; moreover, the vitamin D status reflected the sufferer's perceived quality of life, measured by the extent to which they reported the impact on IBS on life."


To your question… Taking supplements before testing will skew the test results. Do NOT take supplements before testing.

juan wrote:another Q: any research on low T and MS? i have seen a smattering of info...It seems to me that if MS responds to steroids, and testosterone is a steroid, that having low T could trigger the flare up...or the disease could be causing the low T...either way the two things of a noticible uptick in symptoms and the low T seem to be more than co-incidental to me. (or at least to me, in my case anyway)

any links to current info on this would be appreciated.

i'm also concerned the Doc's delaying treating the low T until seeing MRI and getting me into see a endocrinologist (which could take who knows how long) may allow the flare up to do more damage if gone untreated. (assuming there is an interconnection)

This is not "research on low T and MS," but rather on low T and vitamin D. Vitamin D plays a critical role in every system of the body, including the reproductive system. It has been linked to polycystic ovarian syndrome in women and erectile dysfunction in men; there has not been much research with testosterone.

However, there was a study, published in 2015, comparing the vitamin D and testosterone levels of 652 Korean over age 40:

Serum 25-hydroxyvitamin D levels and testosterone deficiency in middle-aged Korean men: a cross-sectional study
http://www.ajandrology.com/article.asp? ... aulast=Tak

"A vitamin D deficiency [25(OH)D < 20 ng ml−1 ] was associated with an increased risk of deficiencies of TT [total testosterone].…"


By the way, vitamin D is also a steroid hormone. It is a secosteroid.

juan wrote:another Q: any research on low T and MS? i have seen a smattering of info...It seems to me that if MS responds to steroids, and testosterone is a steroid, that having low T could trigger the flare up...or the disease could be causing the low T...either way the two things of a noticible uptick in symptoms and the low T seem to be more than co-incidental to me. (or at least to me, in my case anyway)

The steroids used to treat acute MS relapses are corticosteroids, e.g., either prednisone tablets or a methylprednisolone IV infusion. They induce apoptosis (cell death) in the white blood cells and thereby reduce inflammation. This is a very different activity from that of testosterone.

so much to learn...so little brain to learn it with.

i wrote hypocampyus above, i meant hypothalmus, effected for the same reason. as in the H-P-A axis.

so i'm no MD, but as i understand...testosterone begets a small amount of estrogen in males, the hypothalmus meters this; when it gets low it "tells" the pituitary to produce FSH and LH, which in turn tell the testes to produce spermazoa and testosterone, respectively.

so... Low T should also make for low E, which should make for the Hyothalmus screaming at the pituitary for more FSH and LH (which in me is not)...

testosterone is an anabolic steroid, or tissue building...so would it not (also) have a profilactic effect on nerve myelin is my thoughts...and a protective effect on the brain tissues as well.

or as a symtom... if a brain lesion on the hypothalmus is screwing up the "E meter" and the pituitary is not being told to produce FSH and LH precursors...voila, low T.

so... estrogen blockers to stimulate hypothalmus, or testosterone supplement to help protect and rebuild tissues. (and crank up the energy levels.)

shoulda went to university.

anybody have any links to research on these theories? i can't be the only guy thinking this...(one thing i do know is I rarely have an original thought)

juan wrote:anybody have any links to research on these theories? i can't be the only guy thinking this...(one thing i do know is I rarely have an original thought)

There was one case that I recall of someone experimenting with growth hormone, but this is certainly not a standard treatment and should only be done under the guidance of a doctor.

http://www.thisisms.com/forum/regimens- ... ml#p235287

In any case, without a diagnosis, it's a bit premature to start considering treatments.

With the rash and joint pain have you discussed lupus with your doc? There's a lot of crossover symptoms.