Tingling face-diagnosed with MS 5 days ago-booooooooo

[wombat]

I was diagnosed a few days ago. Boo. I started getting these "hot spots" like burning areas in random places that would come and go a few years ago. This year they were more frequent. They would last anywhere from 5 hours to a couple of days. I also had a little tingling in both hands that would come and go plus arm/leg weak feeling a few times that would be random and last a few hours to a couple of days. 3 months ago I had the worst fever blister I have ever had and my face started tingling. I went to the Dr and the fever blister went away but the tingling remained so he sent me to a neurologist. The MRI showed 15-20 lesions but not in the "typical MS areas" so she wanted to do a LP. Also had to have a blood patch a week later. It's been 3 weeks and the back pain is almost gone. LP was positive for 12 o-bands plus 2 other markers. Now after the Christmas/NYE holiday next week I will start Copaxone. Not looking forward to living with a tingling face and giving myself shots 3 days a week but I guess this is my new reality. I'm glad for sites like this so I can talk to people who have been there.

[lyndacarol]

Hi, wombat; you come to this website with quite an introduction!

As I understand it, these have been your symptoms:
Burning spots
Tingling in both hands
Neurological lesions (white spots in the brain)
O-bands (oligoclonal bands)
Strange feeling on arms/legs
"Crawling" feelings
Weakness

These are found with many conditions; they're all consistent with a vitamin B12 deficiency. I urge you to read the following website:

http://b12awareness.org/

[Youarethecure]

boooo indeeeeeeeed

I was diagnosed early this year. I am 25 and male.

How old are you? Male or female?

There are many things you can do to try and fight back. Diet, medication, exercise, nutrition, and lifestyle are all things you can adjust to better your quality of life. This website is GREAT to learn all these things and about MS. I also take copaxone. It starts becoming normal, trust me. Its not fun but it is not too bad at all.

Life goes on, it doesn't slow down just because we are sick.......it is what it is. It has made me enjoy the good times better, and even when its bad I know I will eventually be back to feeling well and I just buckle down and endure the hard times.

I hope the best for you,

Chris

[ElliotB]

Welcome to TIMS. Many of us successfully control the illness as Youarethecure mentions through diet, exercise, nutrition, supplements and lifestyle change, and of course medication. I was diagnosed almost 2 years ago and am doing fantastic. Many or perhaps all of the symptoms you are experiencing now will go away (hopefully sooner rather than later) and hopefully stay away. Copaxone is a great medicine and will hopefully work well for you. After a short time, taking the shot will become second nature. I look forward to it because I believe it is working well for me.

Be proactive! This will help you the most. There is a wealth of information on this site. Take the time to explore it thoroughly. And know you will feel better soon.

[wombat]

Thanks for responding everyone. I am 41 and a female. They did a bunch of blood work and my B-12 came back normal. I do plan to get back to exercising and eating a lot better. I'm just very sad about it but after the holidays are over hopefully it will have time to sink in and I will get myself together.

[lyndacarol]

Thanks for responding everyone. I am 41 and a female. They did a bunch of blood work and my B-12 came back normal. I do plan to get back to exercising and eating a lot better. I'm just very sad about it but after the holidays are over hopefully it will have time to sink in and I will get myself together.

I am curious – ignore my questions if you find them too personal and intrusive… Which specific tests were done? The serum B12 test alone is not adequate to determine a deficiency. Do you have a copy of the results – the actual numbers? Who and what determined "normal"for your B12 level? (In Japan, any B12 level below 500 pg/mL is considered a deficiency. The authors of the book, Could It Be B12?, think that lab standard ranges in the US are set too low.)

[wombat]

No problem. I had to fast for this blood work. The Clinical Pathology Lab in Austin, TX processed it. My results are under the "In Range" part. It says:
Test Name, In Range, Reference Range
VITAMIN B 12, 543, 250-1100 PG/ML
FOLIC ACID, >24.0, >5.0 NG/ML

They also ran Hemoglobin A1c, Bun/creatinine Ratio, ANA Profile.

[lyndacarol]

No problem. I had to fast for this blood work. The Clinical Pathology Lab in Austin, TX processed it. My results are under the "In Range" part. It says:
Test Name, In Range, Reference Range
VITAMIN B 12, 543, 250-1100 PG/ML
FOLIC ACID, >24.0, >5.0 NG/ML

They also ran Hemoglobin A1c, Bun/creatinine Ratio, ANA Profile.

Your vitamin B12 test result at 543 pg/mL would appear to be good, but because the reference range goes so low (to 250 pg/mL) your value is not as good as it appears. It is barely over the cutoff for deficiency in Japan; it does not quite reach the cutoff (of 550) recommended by the authors, Pacholok and Stuart. In fact, these authors suggest that the B12 level aimed for should be at 1000 pg/mL or more if a patient presents with neurologic symptoms, which you have: http://b12awareness.org/could-it-be-b12 ... diagnoses/

On the surface, folic acid also appears to be good, but too much folic acid can interfere with the metabolism of vitamin B12. I am no expert in these blood tests, but it seems possible based on your clinical symptoms that you might still have a B12 deficiency. The pathway of B12 metabolism is the most complex of all vitamins – the body must supply about 14 different proteins for processing B12 and getting it to the cells.

You very well could be eating plenty of foods with B12; your digestive tract could be producing all the binders, acids, enzymes, and Intrinsic Factor necessary for absorption; your small intestine may be working just fine; the B12 may be getting into your bloodstream. BUT if the B12 is carried on the transporter protein haptocorrin, instead of the protein (transcobalamin) necessary to carry it to the cells, the B12 will NOT reach the cells… And you will have a B12 deficiency in the tissues.

You are off to a good start with the B12 test and the folic acid test, but they are not enough to say that you do NOT have a deficiency. If your doctor orders a serum homocysteine test and a serum (or urinary) methylmalonic acid test, these two additional tests could confirm the first two you have already taken. However, if the Hcy and the MMA tests come back with elevated results, it is a sign of a deficiency. The HoloTranscobalamin (HoloTc) test can give you a more accurate picture of whether the B12 can actually make it to the cells.

I think you have a good reason to discuss this further with your doctor.