New symptom out of the blue

[lyndacarol]

Thank you both for replying. I'm waiting for a call back from my gp's office to see if they can send the blood work request in without seeing me. I rarely drive these days because of the side effects of the gabapentin. My husband's shifts at his job make it difficult to have him take me anywhere on short notice. If my gp won't agree to just order the tests, I'll call my neurolgist's office and ask. Hopefully someone will understand the situation and help me out. I'm curious to know if my health issues are related to something as simple as a vitamin deficiency. I always get a printout from my appointments to have my own documentation on everything.

Good for you!

It seems logical to me that your GP will order the blood work without seeing you. It makes more sense to me that he, if anything, would want to see you after test results are in, to discuss them with you especially if any one of them is deficient.

As for getting to the lab… Could a friend, a family member, or a neighbor take you for testing? A bus or taxi? I completely understand that your husband's work makes it difficult to shuttle you around. As a last resort (for the vitamin D, at least) there is the in-home test available through GrassrootsHealth (http://www.GrassrootsHealth.net).

[LisaH]

I didn't hear anything back today. I haven't been there since November (when this all began) so they could insist that I come in first. I might try to avoid that and just give my neurologist a call tomorrow to see if she'll order the test. There's no reason to see a gp now since my health issues are beyond what they can do anything about. That's why I was referred to begin with, right? If my neurologist will order the test without seeing me, I'll be asking my mom for a ride for testing if my husband's schedule is hectic.

[LisaH]

I heard back from my doctor's office this morning. She's willing to order the blood work without seeing me first because one of my symptoms is tingling. I initially only asked for B12 but she decided on her own to do both B12 and D. I also had to schedule a "physical" for sometime within the next 3 months. It's an insurance thing, apparently. I called the lab at the hospital and was told the turnaround is 24-48 hours and that I can go there (show my ID) and get a printout of the results. I'm waiting for another call to let me know when to go to the hospital which will be either today or tomorrow. After a few searches, it looks like both B12 and D can be deficient for people with MS. I also read: "Vitamin D deficiency may play a role in the onset and progression of multiple sclerosis". If my numbers are low in either or both, how will they discern if it's MS-related or simply a deficiency? In other words... if my levels are normal, does that point more toward MS since doctors generally "rule out" certain vitamin deficiencies when they suspect MS... or would normal levels point more away from MS since people with MS can have deficiencies? This has me very perplexed.

Here's the link for the quote: http://www.dummies.com/health/nutrition ... sclerosis/

[ElliotB]

A diagnosis of MS is usually made using several different testing methods, and I don't think a B or D vitamin deficiency is one of them. You may find this article useful:

https://www.nationalmssociety.org/Natio ... -of-MS.pdf

A MRI and/or lumber puncture is probably the next step if MS is suspected.

[LisaH]

ElliotB,

I was referring to vitamin deficiencies being ruled out when MS might be suspected. I didn't mean that it's used to diagnose MS. I have a follow-up MRI scheduled for the end of July. It's being done to see if the cyst I have has grown and if any other changes have occurred since my first MRI back in November. As for a lumbar puncture, that may or may not come later depending on the results of my MRI and blood work.

[ElliotB]

Nt quite sure what you mean but a diagnosis of MS can be made with the patient having normal or low vitamin levels - don't know if this answers your question. Perhaps I am not understanding what you are trying to convey,


"vitamin deficiencies being ruled out when MS might be suspected" many (but not all) with MS do indeed have vitamin D and or B deficiencies, so if I am understanding correctly, actually the opposite is probably more common.


Also, keep in mind that MS is sometimes hard to diagnose and can take some time, so be patient...

[LisaH]

I apologize if my wording is confusing in some way, ElliotB. Doctors rule out other possible causes (such as B12 deficiency) when they suspect MS. However, people with MS can be deficient in B12 and vitamin D. So, a deficiency doesn't really seem to reveal much as far as MS in concerned. If my results show that I don't have a vitamin deficiency, would that be considered "ruled out" by the doctors and would they then move on to other tests like a spine MRI or a lumbar puncture? Or....... if I do show a deficiency, does that mean the doctors then assume it must not be MS?

[Snoopy]

Hi LisaH,

I think there is some confusion.

What someone experiences or feels are symptoms. Drs. do exams/evaluations and testing looking for signs to indicate what might be causing symptoms.

The diagnostic criteria relies heavily on MRI evidence, in your case the MRI doesn't currently indicate any sign of MS. In this day and age it is difficult and sometimes impossible to receive a diagnosis of MS without MRI evidence. MS cannot be diagnosed based on symptoms alone.

Anyone can have vitamin/mineral deficiencies, those with MS and every other person in the general population. Vitamin/mineral deficiencies can cause many symptoms including Neurological. If a person is B-12 or D deficient then supplementing to bring those deficiencies up can improve or resolve a person's symptoms.

When a person who doesn't have MS has a vitamin D or B-12 deficiency the deficiency then would likely be diagnosed as the reason for the person's symptoms. Not having a vitamin/mineral deficiency doesn't rule in MS, it simply rules out a vitamin/mineral deficiency for the cause of symptoms.

[lyndacarol]

I heard back from my doctor's office this morning. She's willing to order the blood work without seeing me first because one of my symptoms is tingling. I initially only asked for B12 but she decided on her own to do both B12 and D. I also had to schedule a "physical" for sometime within the next 3 months. It's an insurance thing, apparently. I called the lab at the hospital and was told the turnaround is 24-48 hours and that I can go there (show my ID) and get a printout of the results. I'm waiting for another call to let me know when to go to the hospital which will be either today or tomorrow. After a few searches, it looks like both B12 and D can be deficient for people with MS. I also read: "Vitamin D deficiency may play a role in the onset and progression of multiple sclerosis". If my numbers are low in either or both, how will they discern if it's MS-related or simply a deficiency? In other words... if my levels are normal, does that point more toward MS since doctors generally "rule out" certain vitamin deficiencies when they suspect MS... or would normal levels point more away from MS since people with MS can have deficiencies? This has me very perplexed.

Here's the link for the quote: http://www.dummies.com/health/nutrition ... sclerosis/

Since your GP, on her own, decided to add the vitamin D test to your requested B12 test, I have a favorable impression of her.

You are correct: Vit D and B12 are frequently low/deficient in people with MS. But other nutrients are often deficient, too… for example, magnesium, zinc, and others.

I do believe the quote you posted from the Dummies article: Vitamin D deficiency may play a role in the onset and progression of multiple sclerosis. However, I have found misinformation in the same article. There have been THOUSANDS of articles in peer-reviewed medical literature about vitamin D; Vit D has been proven to be effective in many conditions.

To try to answer your question… if your numbers are low (B12/D), I think your doctor will treat your deficiency first and not try to label your symptoms as being MS-related. (There is effective treatment for a nutrient deficiency; there is no effective treatment for MS, in my opinion.)

If your levels are "normal," I would want to know the standard range that was used by the lab for that test – in general, the standard ranges are notoriously low. Please share your test result numbers with us, when they are available.

I will be very surprised if your test results are at the high (optimal) end of the standard range. Many neurologists are recommending Vit D levels between 70-100 ng/mL for their patients who have neurological symptoms. For B12, the recommendation is 500-1000 pg/mL for patients with neurological symptoms.

I understand your concern over a possible MS diagnosis, but please realize that these other conditions are much more likely than MS. Believe me, I know is is hard to have patience. Your new friends here at ThisIsMS wish you the best… we're here to try to help.

[LisaH]

Thanks very much for the replies. I'm still waiting to hear that the order has been sent to the hospital, so hopefully they'll get it done soon. Regardless of the results, at least I'll have B12 and D already tested for when it's time for my other appointments. Maybe that will save some time in the long run? I'll definitely share the results when I get them.

[LisaH]

I just thought of another question that someone might be able to answer for me. I'm currently taking 1800 mg of gabapentin daily for my neuralgias. Would this affect the results of the blood work in any way?

[lyndacarol]

I just thought of another question that someone might be able to answer for me. I'm currently taking 1800 mg of gabapentin daily for my neuralgias. Would this affect the results of the blood work in any way?

I can only think that any test you can have now, before your other appointments, will indeed "save some time in the long run" – unless your later appointments are at the Mayo Clinic, where they don't trust any testing/results done by any lab except their own. (At least, this was my experience at Mayo's in Minnesota.)

To address your question… there are medications that can interfere with a test's accuracy, but to my knowledge gabapentin does not affect test results. If I am incorrect, I ask that someone will share the information with me.

But, for example, taking B12 supplements before testing will skew B12 test results. A washout period (10-14 days, usually) is recommended before B12 testing.

It is my understanding that the same does not hold true with vitamin D. The vitamin D test results accurately show the blood level, even if the person has been taking supplements all along.

[LisaH]

Thanks for the info, lyndacarol. It hadn't occurred to me that they might not accept test results from somewhere else. My neurosurgeon is in Winston-Salem and they'd be likely to consider "outside results" less reliable. My local doctor's office still hasn't sent the order to the hospital. As of my last conversation with them, they seem quite adamant that I need a complete physical before getting my blood work ordered. I became quite upset and said, "So I can't have my B12 and vitamin D checked unless I get in stirrups?!" and the woman insisted that she didn't mean it that way. I'm having no symptoms that would require that type of exam. At this point... I'm thinking it might be best to contact my neurologist regarding the blood work. If she thinks it would be beneficial to check my B12 and vitamin D, she could have it done when I go for my next appointment. Hopefully she won't insist that I have a complete physical first.

[Snoopy]

It is very common for a Neurologist to run blood work to the tune of 12 or more vials of blood which checks for a multitude of things including vitamins D and B-12.

[LisaH]

I hope they decide to just check for everything and get it done. I'm wondering if they'll recheck the cortisol, prolactin, etc. again to see if those have changed. I'm nervous about the follow-up MRI because the cyst might have grown. It's deforming my optic chiasm and encasing arteries, etc... so removing it would be extremely dangerous. The neurosurgeon and neurologist don't seem to think it's the reason for my head pain (neuralgias) or vision changes. However, I've read that very large cysts often cause headaches and vision problems, so hopefully the doctors are right.