Forum

So vitamin D deficiency or MS? I'm scared and don't know where to turn.

So this all started with pain in my right eye. I went to a shop in the mall that sells glasses and has an eye doctor on staff, who diagnosed me with Optic Neuritis. Then when I went to my regular doctor, and they said that they saw no O.N. but they did see some sluggish pupil movement and I have some vision loss. So I had an MRI. As I was awaiting the MRI results I began losing feeling in my left hand, then my left arm, then my feet. MRI came back clean. Doctor told me I was fine and it was anxiety. Then got severe pins and needles in my left arm that would lead me to fits of rage when it kept me awake for 24 hours in a row. I got what I call phantom bugs or a tickling sensation on my cheek. I lost all ability to sense any heat in my left hand and proceeded to burn myself fairly badly while trying to cook. Before any of this happened I had been experiencing frequency in urination that was so bad that I would often sleep on the bathroom floor just so I did not have to get up too much. After about two months of the numb limbs I went back to the doctor and told them that they were going to take me seriously or I was going to off myself. The did some blood work and told me I had low D levels. They put me on a prescription strength vitamin D and I have noticed improvements, though I still have a bad tremor ( forgot to mention the tremor ) and I feel just horribly weak and my legs don’t seem to want to function like I want them to. I still piss like mad, and I still get a tiny bit of numbness. Can I possibly have MS with a clean MRI? Am I crazy? Are my doctors crazy? What can I do? I’m seriously losing all hope, I do feel better after some vitamin D but I still feel pretty crappy.

Don’t really know what to say other than go back to your GP hun. Good luck x

Yeah the GP thinks I’m crazy. I’m thinking I’ll just wait it out.

Hi Hon and welcome to the forum…

Very worrying time for you and nothing is worse than unexplained symptoms.

Having a clear MRI can be a big problem if you have MS-like symptoms, which you have, as it’s the first stage in seeing if it’s MS.

Although your symptoms are MS-like there are lots of conditions that have similar symptoms. One of those is a Vitamin D deficiency.

Vitamin D isn’t a vitamin at all… badly mislabled! It is actually a hormone that really can lead to a whole load of symptoms that are like MS.

The NHS prescribe quite a low dose of Vit D… and if I were you I would consider going on a higher dose. Healthy Origins on Amazon sell a much higher dose… about £8 for a year’s supply… which many of us take. It’s 5,000 iu (international units) a day… so you will see that’s much higher than the NHS. Would be worth you thinking about. (lots of us with MS take Vit D3 as they think there’s a link… although we don’t all test as being low in Vit D3).

Also Vitamin D takes a long time before you notice any difference… I started feeling a tad better after 3 months… so give it some time.

It is possible that lesions were not showing on your brain for this MRI, but might for the next. But you need to leave it for some time, say 6 months or a year, before having another.

Take a look at the ‘sticky’ on top of the ‘newly diagnosed’ page by Rizzo called ‘A brief beginners guide to the brain and MRI’. You will see there how sometimes the scanner does not show lesions.

You are certainly NOT crazy!!! Lots of people on here with symptoms but have difficulty finding what exactly is causing the problems.

You say the doctor told you that the MRI was clear and nothing was wrong. Was that a GP or a neurologist???

With your symptoms you need to see a neurologist.

MS can be very difficult to diagnose… as many of us on here know… esp with a clear MRI. But really only a neurologist can say there is nothing wrong. A GP is not specialised enough to come to that conclusion.

Let me know if you saw a neurologist.

Take care,

Pat x

Thanks for the feedback Pat! I am scheduled with a Neurologist. I scheduled the appointment back in May but due to high demand I won’t see him until September, and since I’m actually in the bleeding hell hole of the Midwest of America, there is only one hospital within a two hour drive and the one two hours away does not accept my insurance. So I play the waiting game. I just figured I’d get a little advice and ideas from some good people such as yourselves. I am on a cancelation list so if someone cancelled an appointment I’ll get called after a crap ton of other people ahead of me on the list.

Hi, well it’s great you are going to see a neurologist. And the time lapse will be good to see what difference the Vit D makes.

Take a list with you of symptoms. Do not make the list too long or detailed. Neuro’s always think you have health anxiety. Just list your main symptoms like you have above.

Do not say that you have googled symptoms or that you think it might be MS. Neuro’s hate that and will not take you seriously.

Best of luck with it. Hope you get some answers soon… not that long till September really.

In meantime, rest as much as you can and keep anxiety levels low as possible… and avoid heat if you can.

Take care, and come back and tell us what happens.

Pat x

I will keep in touch for sure. I have a question though. Say my symptoms might actually be MS related, how quickly can MS symptoms go into remission? Because I hear that vitamin D deficiancy takes time to right itself, and my numbness in my limbs literally went away overnight, minus a tiny little bit of on and off numbness in the three fingers f my left hand, and even that seems to be going away.

Hi again, I’m PPMS hon so don’t have relapses… but hope that someone with RRMS can answer your question.

But generally I think MS symptoms for all types of MS and come and go quickly. Heat, stress, viruses and fatigue can all impact symptoms dramatically and can reverse quickly when things change… esp if you rest!

Pat x

hI, I’m RRMS i think it varies with everyone!! my first realpse only lasted a week then started to clear up but this last one lasted about weeks before i noticed the symptoms going into remssion but they never seem to fully go,

Hope this helps a bit

Kate x x

I think this does help, because I notice that though my symptoms almost totally go almost all the way away… There is always a tiny bit of a prickle, or a generic numb feeling, or a bit of a fatigue in my legs. It was funny because after I wrote this last post, I was feeling so good for nearly a week, then my boss set in on me, and got me all worked up. I had already spent a good hour busting my butt getting hot and sweaty, and BOOM! My whole left arm was pins and needles, and my left hand was totally numb. Right leg was dragging behind me and the tremors were back like never before. God I would give anything for five minutes with a neurologist. Though I’m a little scared that he’s going to try to go for a lumbar puncture what with my MRI being clean and all… We shall see. Anyone got any lumbar puncture stories? I’m terrified of them and it might make or break me getting a diagnosis. You guys have been great to me. Some of the first to actually take me seriously! This web site is informative, and I will post any updates, and if I have any more questions, I know where to go!

Ah! Update! My white cell count is high but they don’t know where the infection is. Since I have been complaining of frequency in urination for a long time my GP thinks its a UTI, but I’m really prone to UTI’s so I know without a doubt what those feel like and I don’t have one, but she was insistent that I probably had a UTI so I just went with it. It infection normal for an MS patient? -if I have MS that is- I’m also confused as to why they can’t tell where I’m infected at. Because I know it’s not my girly bits… At least not until the yeast infection sets in once I start that antibiotics.

Hello autumnrayne

You have had some great advice so far - here’s how to make some of it work for you.

Make a list.
Actually, you want to make several.

  • Start by putting down everything that “bothers” you.
  • Now put them into order - worst first.
  • Now look for the things that are probably all part of the same symptom. Example: Legs. Does one of them feel very heavy? Do you have trouble lifting that foot off the floor? Does one big toe turn up? Do they both “tingle” the same, or is one side woerse than the other. And so on … Your problem is the legs, with the important thing that they feel different one from another.
  • Do this for everything

Now you should have a short list of problems with all the bits that go with that problem.
Put these into “Worst First” order again

That is the list you take with you - with two copies.
The first copy is for you to look at to make sure that you tell Worst First.
Do not give the neuro the other copy unless asked for it. You want their attention on you, not reading a list.

Start now, and update your list as you go on.

So, UTIs are common amongst MS victims - so don’t over play it, just mention that they are more frequent recently.
Bladder problems are more common with MS victims. Again, don’t overplay them, they are just more frequent.
You have been on extra Vit D, but it has only made a small difference.

If you have read the “sticky” by rizzo, you know that some MRI scans are not as good as others. Don’t offer the information up front, but mention it well into the interview when you have an idea which way it is going.

So that is you as a person, presenting with a short list of problems that unpack into enough information to get a diagnosis, or to point up what further tests need doing.

And, no, I do not envy you your weather. I have been in Southern Utah in July (pushing 125 degrees) and I never want that again.

HTH

Geoff