cokeclanmom
11-17-2007, 01:55 PM
I have been having problems with stabbing pains in my face and head, tingling in my arms, legs, feet and hands. I have developed a tremor in my right hand. The lastes is my blood work show that my vitamin d levels were low. I have started my a vitamin d supplement but do not understand why they were low. My MRI scan was normal but the symptoms are not going away. Things will get better for a couple of weeks but will then flare back up. Lately, the numbness and tingling will wake me up during the night. My neuro has danced around the idea of MS. Does anyone else have these symptoms? This is all very draining.
Thank you for your advice
Cokeclanmom:confused:
Thank you for your advice
Cokeclanmom:confused:
Sponsor
Bearygood
11-17-2007, 03:58 PM
Hi, cokeclanmom. Tingling is a common complaint with MS and the other things you're describing could be sx of MS as well but not MS alone. Was your MRI done with and without contrast and did they also do a c-spine MRI? Since disease activity is what causes lesions, they often don't show up right away. Re: the D deficiency, recent research has pretty much confirmed that this can increase the risk for MS and even possibly help it in those already diagnosed and without a clinical deficiency. These findings are specifically in regard to D3 (cholecalciferol), which is a very inexpensive supplement to buy. Are you supplementing at the suggestion of your doctor and how much are you taking? I'm not sure that the things you're experiencing can be attributed to a D3 deficiency but they CAN be present in the absence of enough B12.
What does your neuro say you should do at this point?
What does your neuro say you should do at this point?
cokeclanmom
11-17-2007, 04:11 PM
Thank you for replying. My neuro said to take 1.25 mg vitamin d weekly along with the multivitamin and omega 3 fish oil that I was already taking. She said we would possibly do a spinal tap if the vitamin d did not help. She said there was nothing else they could at the moment. I have also had 2 UTI infections within the last three months. It seems like everyday there is something new!! My mri was done with and without contrast and no I have not had a c-spine mri.
Bearygood
11-17-2007, 04:26 PM
Are you taking D3 (cholecalciferol) or just a regular D supplement? If you're unsure, look at the bottle. Whatever you're taking is measured differently than what I have so it's hard to compare to the doses I've heard recommended.
Fish Oil is great for inflammation and brain health and one of the most commonly recommended supplements for MS. If you can, try to buy brands that warrant the fish is from mercury/toxin free waters. The brand I buy is Spectrum. :)
Fish Oil is great for inflammation and brain health and one of the most commonly recommended supplements for MS. If you can, try to buy brands that warrant the fish is from mercury/toxin free waters. The brand I buy is Spectrum. :)
Bearygood
11-17-2007, 04:29 PM
Here's a recent thread you might be interested in taking a look at:
http://www.healthboards.com/boards/showthread.php?t=544686&highlight=cholecalciferol
http://www.healthboards.com/boards/showthread.php?t=544686&highlight=cholecalciferol
cokeclanmom
11-17-2007, 04:47 PM
The only thing that the bottle says is vitamin d 1.25 my generic for Drisdol. It was filled through the drug store not over the counter. I know Dr. said I would be taking 2500 Iuc or something like that. Thank you so much for answering, it is wonderful to have a place to ask questions. I have three young children two of which are on the autism spectrum, so my life is already very full. I was not sure where to turn to ask question.
Bearygood
11-18-2007, 11:49 AM
Since your post I read of 2 people with MS taking 50,000 once a week! Of course, this was on the advice of their neuro.
cokeclanmom
11-18-2007, 12:55 PM
Thanks again for your response. I have been reading some of the post also. I am going to call my neuro on Monday since none of the sx are going away. She wanted to await until February to do any more test but I am not comfortable awaiting that long. So far I have been tested for Lyme disease, B12 and a host of other things which all came back normal.
I keep trying to avoid being obessive about all of this but 3 months without answers seems excessive to me.
I keep trying to avoid being obessive about all of this but 3 months without answers seems excessive to me.
Bearygood
11-18-2007, 01:23 PM
Believe it or not, when it comes to mysterious illnesses (and often those neurological in nature), 3 months is not unusual. Ironically, I got a dx very quickly and MS was not even on my radar!
That said, the attitude you have is important though -- you have to act like it's excessive and keep pressing for answers!
Good luck and please do keep us posted and ask any questions you need to. :) (Re: Lyme, especially if you think you might have been exposed, it's important to know where your blood work went to -- not all labs with Lyme are created equal and there are also co-infections that are not tested for out of the gate.)
That said, the attitude you have is important though -- you have to act like it's excessive and keep pressing for answers!
Good luck and please do keep us posted and ask any questions you need to. :) (Re: Lyme, especially if you think you might have been exposed, it's important to know where your blood work went to -- not all labs with Lyme are created equal and there are also co-infections that are not tested for out of the gate.)
marymmv
11-18-2007, 02:34 PM
cokeclanmom, hi boy you sound like me. i am so tired of having weird symtpoms, though my mri s came back neg. i too have symptoms of tingling ,numbness,dizzy,fatigue,body aches, arms and legs feel so heavy at times, just feeling crappy. lyme disease came back neg though blood was messed up. i havent worked for over three weeks was in the hospital end od oct. thinks i may have gotten reinfected with epstein barr virus which if i have early ms the ebv would/could of triggered a flare up..??? nerologist said no to ms but family dr wont rule it out..i dont know what is wrong with me i DO KNOW THAT MY LIFE AT TIMES FEELS LIKE IT IS WASTING AWAY and i cant seem to get answers.. good luck mary;)
cokeclanmom
11-18-2007, 05:34 PM
marymmv, I hope you also get answers soon. It is flustrating not knowing what is going on. My neuro has not ruled out ms eventhough my mri was negative. keep me posted and I will do the same.
janito
11-20-2007, 07:08 AM
Hi guys im in the same boat with similar symptoms, tingly lower legs feet hands even my head somedays, muscleaches, muscle spasms, vision issues odd head aches tierd heavy legs just generally not well , right ! Ive had Mri on brain and cspine, loads blood work tested for lymes lupus the lot all clear. However since my symptoms have persisted for well over 18nonths now they are taking me into hospital next month for a battery of testing. lumbeer punture, mri brain and c spine again, and nerve conduction test, This is not umcommon to be undiagnoised for months or even years as the ms causes the leisions they may not show up on early mris.
Just to let you know theres many people in limboland take care of yourselves
janito .x.;)
Just to let you know theres many people in limboland take care of yourselves
janito .x.;)