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What now?
Posted: Wed Nov 11, 2015 2:26 pm
by malrd
Hi,
I don't usually do this, but I'm feeling every emotion possible.
It started a few weeks ago. I was at the gym and on the treadmill, I kept feeling a "buzz" in my feet. I didn't think much of it. It happened again on a walk and here and there.
A few weeks later, I was at work and felt this hum/pulsing in my left foot. I thought it was just because I was at work and there's all kinds of machines and stuff.
Then, the following week, on teh treadmill, I noticed the buzz in my feet again and figure out it was when I looked down.
So, lovely Dr. Google sent me straight to anxiety hell. I called my Dr. and saw the nurse practioner. At that point, I hadn't connected the humming in my foot to the neck thing (if there is one??) She said my symptoms were not scaring her. She ordered some tests: B12, Folate, TSH, Lyme, RPR, Rheumatoid Factor, and ANA. All came back normal. She siaid to call if anything changed or got worse or new.
I'm still feeling the hum on and off. Still feeling the foot buzz at certain times when I bend my neck. Not all the time and it's usually after being active like walking around or doing laundry.
I'm scared. I feel like my symptoms are not anxiety related because I had them way before MS even entered my thoughts. Should I just schedule a neurologist appointment on my own? What other tests are available that could possibly rule out?
Thanks for reading f you got this far....
Re: What now?
Posted: Wed Nov 11, 2015 3:11 pm
by lyndacarol
malrd wrote:I called my Dr. and saw the nurse practioner. At that point, I hadn't connected the humming in my foot to the neck thing (if there is one??) She said my symptoms were not scaring her. She ordered some tests: B12, Folate, TSH, Lyme, RPR, Rheumatoid Factor, and ANA. All came back normal. She siaid to call if anything changed or got worse or new.
Welcome to ThisIsMS, maird.
The nurse practitioner was very smart to order all those tests. MS is a diagnosis of exclusion, made
only after other more likely possibilities have been ruled out.
I hope you have your own copies of all the test results – "normal" is not adequate. The actual number results are most useful.
If you do have the numbers, I am curious to know the "serum B12" numbers. This outdated test alone is not enough to rule out a B-12 deficiency –
thorough testing should also include the serum homocysteine test and the methylmalonic acid test. (These tests are relatively inexpensive and may offer valuable information.)
In my opinion (I have no medical background), I think there is no benefit to make your own appointment with a neurologist. Let your GP do the initial testing and, if necessary, refer you to the appropriate specialist. Neurological symptoms do not necessarily stem from
neurological problems. Celiac disease, nutrient deficiencies, lots of other problems outside of neurology can cause neurological symptoms. Specialists, such as a neurologist, frequently will not consider causes outside their area of expertise.
Re: What now?
Posted: Wed Nov 11, 2015 4:41 pm
by malrd
Thank you for your reply! I appreciate it.
My serum B12 was 558 pg/mL (reference range 211-911). My folate levels were normal range >15.4 and forgot a SedRate was done with a result of 6. TSH was .987. Everything else was non-reactive or normal.
Interesting you brought up homocysteine. I had slightly elevated homocysteine about 8 years ago after some miscarriages. I have the MTHFR mutation, so it is believed that's what was causing it.
I understand what you are saying about letting the GP do his job. I did email him and expressed my concerns and asked his opinion.
I guess I'm just so anxious and I feel like I need something more concrete than 'all your tests are normal' so call if things change.
Again, thank you for your reply. I truly appreciate it!
Re: What now?
Posted: Wed Nov 11, 2015 5:34 pm
by lyndacarol
malrd wrote:My serum B12 was 558 pg/mL (reference range 211-911). My folate levels were normal range >15.4 and forgot a SedRate was done with a result of 6. TSH was .987. Everything else was non-reactive or normal.
Interesting you brought up homocysteine. I had slightly elevated homocysteine about 8 years ago after some miscarriages. I have the MTHFR mutation, so it is believed that's what was causing it.
I understand what you are saying about letting the GP do his job. I did email him and expressed my concerns and asked his opinion.
I guess I'm just so anxious and I feel like I need something more concrete than 'all your tests are normal' so call if things change.
Given your history of elevated homocysteine and miscarriages (both possible with B-12 deficiency), and with the MTHFR mutation (also affecting B-12 metabolism), you should certainly request another homocysteine test at this time. Also, request that your GP order a methylmalonic acid test (either the serum or the more accurate urinary form).
As you probably know, you should not take vitamin B supplements before testing because doing so will skew test results. (You did
not take supplements before the serum B12 which resulted in 558 pg/mL, did you?)
As you may know, the B-12 level in the blood can appear to be adequate, but if the B-12 is not carried on the proper transporter, it cannot reach the cells: it is possible to have a functional B-12 deficiency in the
cells, even when there is
no deficiency in the
blood.
Please discuss THOROUGH testing for B-12 deficiency with your GP. Be certain that B-12 is NOT your problem. If caught early, B-12 deficiency is easily and inexpensively treated; undiscovered and left untreated, symptoms of B-12 deficiency may become permanent.
Re: What now?
Posted: Thu Nov 12, 2015 6:11 am
by malrd
I had the blood drawn on the morning of 11/3. I took my multivitamin on the evening of 11/1, skipped 11/2.
I was under the impression that b12 is water soluable and the body takes what it needs then eliminates the rest.
My pee is always bright yellow when I take the multivitamin. I assumed that was a good sign, but maybe not....I'll be doing some research.
Re: What now?
Posted: Thu Nov 12, 2015 8:59 am
by lyndacarol
malrd wrote:I had the blood drawn on the morning of 11/3. I took my multivitamin on the evening of 11/1, skipped 11/2.
I was under the impression that b12 is water soluable and the body takes what it needs then eliminates the rest.
My pee is always bright yellow when I take the multivitamin. I assumed that was a good sign, but maybe not....I'll be doing some research.
First of all, you are correct: "b12 is water-soluble and the body takes what it needs then eliminates the rest."
I do not know if stopping your multivitamin the evening before your blood draw was adequate to obtain reliable test results. A 2-week washout period is the recommendation I have heard most often.
As for bright yellow pee… this has been my experience
only when taking B Complex (containing vitamin B6, B12, and
folic acid). Since I have stopped the B Complex and now take
only B12, my urine is colorless – I suspect folic acid caused the yellow color in my urine. Does your multivitamin contains folic acid?
Research is always encouraged here; maybe your GP will give you useful information. Please share with us what you find – we can always learn more.
Re: What now?
Posted: Thu Nov 12, 2015 7:50 pm
by NHE
lyndacarol wrote:As for bright yellow pee… this has been my experience only when taking B Complex (containing vitamin B6, B12, and folic acid). Since I have stopped the B Complex and now take only B12, my urine is colorless – I suspect folic acid caused the yellow color in my urine. Does your multivitamin contains folic acid?
I thought it was riboflavin...
http://www.todayifoundout.com/index.php ... ht-yellow/
Re: What now?
Posted: Fri Nov 13, 2015 8:02 am
by lyndacarol
It is my understanding that
both riboflavin (vitamin B2) and folic acid (B9) will make urine turn a bright yellow color. Since the B Complex I took contained folic acid and I was taking no other supplement with riboflavin, I assumed the folic acid was responsible for the color change in my situation.
But, you are right, NHE; the multivitamin that maird is taking probably contains BOTH riboflavin and folic acid – it might be either or both together causing the color change in her urine.
After further looking…I may not be remembering correctly about my vitamin B-50 Complex which I thought contained only B6, B12, and folic acid (according to the first linked article B2 was probably in this; I no longer have the container):
I also find different opinions on which B vitamins turn urine bright yellow: riboflavin in the first link (which is perhaps more legitimate) and folic acid in the third link:
http://wholehealthchicago.com/2009/05/1 ... b-complex/
http://www.newhealthguide.org/Vitamin-B ... fects.html
http://www.vitaminstuff.com/vitamin-b9- ... cid-2.html
I now lean toward the "riboflavin side" but still consider folic acid
possible.
Re: What now?
Posted: Sun Jan 03, 2016 9:36 pm
by malrd
Welp,
I'm back again. My GP sent me to a neuro. I had the initial appointment last week. I was little less than impressed so far, but I'll deal for now.
So I explained my symptoms, she asked a lot of questions then did a very brief neurological exam. Basically peripheral vision, the nose touching thing, seat rhomberg, had me take about 5 steps and deep tendon reflexes.
She noted that my patellar reflexes were 'brisk'. She seemed concerned, but said it was symmetrical, so could be nothing.
She scheduled me for an EMG and left me with the statement that it could be something with my spine/nerve roots/compression, or it could be "something like MS".
I'm trying to trust the specialist, but, why the EMG first and not an MRI? If the EMG is abnormal, won't I need an MRI to see the spine? And if the EMG is normal, won't they need to look at my brain and cervical cord to look for lesions?
Re: What now?
Posted: Sun Feb 21, 2016 4:51 pm
by malrd
I'm feeling pretty sad, anxious and helpless right now....I had the EMG which came back abnormal, so I was kind of glad. It showed I had some radiculopathy is my lumbar spine, so an MRI was ordered. The neuro also ordered a brain and c-spine MRI since the shocking sensation is reproduced by flexing my neck.
I got the report for the MRI and will call the neuro tomorrow, but basically the radiculopathy does not seem to be causing the shock in my feet. My c-spine was clear of lesion, but there is a lesion in the periventricular area of my brain that needs further evaluation and contrast scan is recommended.
I'm pretty bummed out about the lesion, especially the location and orientation in the description.
So, I'm still in limbo.
Re: What now?
Posted: Mon Feb 22, 2016 7:32 am
by lyndacarol
malrd wrote:I'm feeling pretty sad, anxious and helpless right now....I had the EMG which came back abnormal, so I was kind of glad. It showed I had some radiculopathy is my lumbar spine, so an MRI was ordered. The neuro also ordered a brain and c-spine MRI since the shocking sensation is reproduced by flexing my neck.
I got the report for the MRI and will call the neuro tomorrow, but basically the radiculopathy does not seem to be causing the shock in my feet. My c-spine was clear of lesion, but there is a lesion in the periventricular area of my brain that needs further evaluation and contrast scan is recommended.
I'm pretty bummed out about the lesion, especially the location and orientation in the description.
So, I'm still in limbo.
So you have had an EMG, and an MRI. Earlier you mentioned having had vitamin B12 measured.
If you have not had a vitamin D test, it would be a good idea to request your GP order one. A vitamin D deficiency can cause neurological symptoms; and it is estimated that over 1/2 of the worldwide population has a suboptimal vitamin D level. Please rule out this possible cause of your symptoms.
Re: What now?
Posted: Thu Feb 25, 2016 7:39 am
by malrd
Yes, Vit D level was 29.3, reference for my lab is 30-100.
This was also nearly a year ago, during the winter, so less sun exposure. I've since been taking a supplement. I will have it rechecked at my yearly.
Re: What now?
Posted: Thu Feb 25, 2016 8:14 am
by lyndacarol
malrd wrote:Yes, Vit D level was 29.3, reference for my lab is 30-100.
This was also nearly a year ago, during the winter, so less sun exposure. I've since been taking a supplement. I will have it rechecked at my yearly.
Your Vit D at 29.3 ng/mL is low (It is known that rickets occurs in children with levels below 20; researchers with GrassrootsHealth.net report that the risk of breast cancer is greater with vitamin D lower than 30 ng/mL; scientists are connecting many conditions to specific levels of vitamin D. I suspect that it will be discovered that Vit D must be at a certain level to avoid the risk of MS – the low level of the reference range will NOT be adequate.).
I encourage you to read through the Coimbra High-Dose Vitamin D Protocol (
http://www.thisisms.com/forum/coimbra-h ... tocol-f57/); be certain that your supplement supplies a large enough daily dose; with a low level, it is important to monitor it regularly – at least once a year, but every six months would be better.
A low vitamin D level will affect any one (or more) of the body's systems. The level in the blood can be raised quickly, but its effect in the body will not be corrected overnight.
Re: What now?
Posted: Thu Mar 17, 2016 6:41 pm
by malrd
Had neuro appointment last week. Orginally said to just forget about the brain lesion, it is likely due to age. I do have a pinched nerved in my back on the right side. My symptoms are mostly on the left with the occasional migration to the right foot. Neuro was a little concerned/confused with that until we looked at the images of the brain.
The neuro apologized and said after seeing the actual lesion, it is pretty concerning in that the shape, orientation and location are pretty much the what and where of a classic MS lesion.
A thoracic spine MRI was ordered and done. Have not gotten the report yet. Also a LP was mentioned.
Vitamin D is now up to 32...at least it's something and B12 in the 900's and folate >15.4.
Awaiting my Tspine results and next appointment....
Re: What now?
Posted: Tue Mar 22, 2016 3:53 am
by gerardyu
does bending your neck upwards or to the side trigger the buzzing as well? do you have any other symptoms apart from the feet buzzing?
i had the feet buzzing , together with a cluster of other sensory symptoms. Seems like i had it worse than you, yet my MRIs of brain and spine were clinically unremarkable. I don't know if MRI findings would correlate well with the symptoms