This Is MS Multiple Sclerosis Knowledge & Support Community

Aww Jennifer, the waiting game sucks doesn't it? I initially had an appoinment to see a neuro on SEPT 30th but got in earlier due to a cancellation. It can be very frustrating. Fingers crossed that you get some answers soon

Cathy

Cathy,
Thank You! Good luck with your appointment. It's wonderful that you were able to get in earlier. Please, keep me posted.
Hugs to you!
Jennifer

meanbee wrote:i guess that all of the blood work looked OK except I am low on iron. He also checked my reflexes and watched me walk. I guess that checked out as well. He told me "You are not going to like what I have to say but, I can't say that you have M.S. or say that you don't!" He also stated that he could some spinal tap testing but doesn't want to do that at this time nor an MRI on my spine because insurance might not pay for it yet.

... He said that maybe those spots are from getting Migraines but he can't say definitively that they are not from M.S. I have never suffered from what I would think are Migraines and usually never get headaches unless I am exposed to a lot of strong scents and then they usually go away after I get fresh air. I don't get the classic horrible headaches that everyone else that I know with migraines get but maybe I do get Migraines and don't know it?…
The G.P.'s office called in some iron for my anemia. I asked if they can do some additional tests to make sure that my b12 really is OK and asked about a fasting glucose test. She said that she will talk to the doc to see if they will and get back to me.
…

Hi Jennifer (meanbee),
As I suggested earlier, gluten sensitivity is a good thing to check out. As Dr. Amy Myers, M. D. has mentioned:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases

Recent study showed that 56% of people with migraines had gluten sensitivity; gluten-free diet resolved the migraine problem.


You said:

The G.P.'s office called in some iron for my anemia. I asked if they can do some additional tests to make sure that my b12 really is OK and asked about a fasting glucose test. She said that she will talk to the doc to see if they will and get back to me.

Please note that Dr. Myers lists headaches and an iron deficiency as symptoms of gluten sensitivity.

A glucose test is used to diagnose diabetes; I do not think it is terribly useful. If you request your GP to order a "fasting blood insulin test" (which is NOT the same as a glucose/blood sugar test), you want your insulin level to be in the optimal 3 UU/ML or lower range.

lyndacarol,
I made an appointment with a rheumatologist for next month. Would that be the kind of doctor that would help me figure out the gluten sensitivity? Do you happen to know if periphial neuropathy and parathesis is a possible side effect of gluten sensitivity? I have been eating gluten everyday since a baby and wonder if it would be unusual for something like this to just surface now (these new symptoms)? These new symptoms are the ones that are really scaring me right now. I kind of think that I could have a sensitivity to gluten but wonder if I don't have something else going on too?
Also, the doctors office said something about some other blood levels (I think folate) and something else were normal, so no additional B12 testing is needed. I will have to find out about the fasting insulin test next.
Thank you SO MUCH again for all of your knowledge and links! I am going to check out that Dr. Oz episode right now!!!
-Jennifer

lyndacarol,
I just watched the Dr. Oz segment. Thanks for pointing me to that. I always thought that Gluten Sensitive was the same as Celiac's. Interesting to know that it's not. It is also interesting to know that gluten Sensitive doesn't have abdominal symptoms! I am convinced now that I do have Gluten Sensitivity. I just wish I new if these neurological symptoms have anything to do with it!
Thanks Again!
Jennifer

meanbee wrote:I made an appointment with a rheumatologist for next month. Would that be the kind of doctor that would help me figure out the gluten sensitivity? Do you happen to know if periphial neuropathy and parathesis is a possible side effect of gluten sensitivity? I have been eating gluten everyday since a baby and wonder if it would be unusual for something like this to just surface now (these new symptoms)? These new symptoms are the ones that are really scaring me right now. I kind of think that I could have a sensitivity to gluten but wonder if I don't have something else going on too?
Also, the doctors office said something about some other blood levels (I think folate) and something else were normal, so no additional B12 testing is needed. I will have to find out about the fasting insulin test next.

In general, ANY doctor can order the tests for gluten sensitivity; however, I think a GP, internist or doctor of functional medicine (or nutritionist) might be more open to the idea (specialists usually only want to do tests in their specialty area).

Peripheral neuropathy (numbness/tingling/pain in the extremities) is a common symptom of MANY conditions – diabetes, MS, B12 deficiency, gluten sensitivity, and many others. A gluten sensitivity can develop at any time in a person's life; likewise a B12 deficiency can strike anyone, at any age.

A person can have more than one problem at one time – it is possible for you to have a gluten sensitivity AND "something else going on too," as you say.

The first tests done to investigate the possibility of a B12 deficiency are #1 a serum B12 test, #2 a serum folic acid (aka folate) test, #3 a serum homocysteine test, and #4 a urinary methylmalonic acid (MMA) test. The outcome of these four tests determines if there is a B12 deficiency in the blood. However, the metabolism of vitamin B12 is a complex pathway, easily disturbed; and a problem can occur anywhere along the way. There may be a good amount in the blood, but there can still be a problem transporting it into the organs and other tissues. There may be a problem using it in the cells. In this case, a therapeutic trial of daily injections for a week or weekly injections for 10 weeks would be a good diagnostic tool (and if symptoms don't change or if your body doesn't need this extra B12, excess B12 is flushed out of the body in the urine). B12 is not toxic; it will not hurt you.

lyndacarol,
I have the opportunity to get an appointment with an allergist that used to be an internist. I heard that he does all sorts of testing for things that other doctors usually don't. Hopefully, he will be the one to help me.
I will bring the above information along with me. It's frustrating that not all doctors don't know which tests to perform. It's also frustrating to have a doctor that is very closed-minded. When I asked the neurologist that I saw today if there was any chance that I have Lymes, he said no. He doesn't believe that there is Lyme Disease in our state. I told him that somebody that lives close to me was just diagnosed with it and he said that it doesn't exist in our state (Nebraska). He also said that he doesn't believe that Chemical Sensitivity Syndrome is real when I asked if I could have that.
So, now I will have to be my own advocate and fight for answers. At least I have way more information to help my cause thanks to you!
-Jennifer