Possible Diagnosis, but also Possible Vitamin Deficiency

[Flute4Me]

Good morning everyone,

My story is kind of convoluted. I went to the doctor initially about a year ago for a pain in my shoulder. She did all kinds of tests (cat scan, x-ray, etc.) but couldn't find anything. However, she did do a blood test on me and found that my vitamin D levels were so dangerously low they were practically nonexistent. She placed me on a high dosage of vitamin D and retested me and my levels were fine. That was the end of that for now.

Cut to about four months ago. I started having this weird sensation when I looked down where this electrical shot would go down both of my arms, mind you at this point I was no longer on any sort of supplements. I also get these episodes where my hands will get intensely numb and weak--this happened about once a day. I went to a new doctor as I was frustrated with my old one and she immediately referred me to a neurologist. He's done an MRI of my brain and spine and saw a lesion in my cervical area--the one that he says is giving me the problems. He also showed me several other 'old' spots in my brain that he called scars. He immediately ordered a spinal tap for me and a 5 day round of steroids immediately afterward, but I'm still a little uncertain. I've been doing research and found that vitamin deficiencies can mimic MS so I guess I wanted opinions before I took such a big leap.

Thank you so much in advance for your help.

[pennstater]

Hi Flute4me,

Did your new doc or neuro run a full panel of bloodwork to look for mimics? Before any diagnosis or treatment, and especially a spinal tap, I would want that.

I guess the MRI was with and without contrast, since indicated old lesions. So the cervical lesion was lit up when the did the scan with the contrast, but the brain wasn't then? If that is the case, it may be used to support dissemination in time and space per MC Donald diagnostic criteria for MS.

Often, neuros won't prescribe steroids for sensory only type of flares. Some will, but leave it to individual if they want to. IV steroids have their own side effects and risk and are most beneficial early in the flare.

I think you are smart to question. If the mimics have been ruled out, I would still ask if you need to take the steroids. I would also ask if the spinal tap is really needed, as often, no longer needed to diagnose MS. You can ask the neuro what he believes, understand why or why can't he diagnose MS according to MC Donald criteria, and what the spinal tap will tell him. Maybe the brain lesions aren't in a normal location for MS lesions, and the spinal tap would help push the diagnosis.

You may also want to consider a second opinion by an MS specialist or MS clinic if any near you.

Good luck to you. Keep asking questions, as we need to be our own best advocate!

[Flute4Me]

Hi Kathy,

Thank you so much for the swift response as I'm still somewhat reeling from everything. He did order blood work, but I'm not certain if it included vitamins or just the usual (blood count, protein, etc.). He did say that my proteins were slightly elevated (8.8, .2 above the 8.6 recommendation). I called my PCP today and requested she order me some sort of vitamin test just to be safe as I'm not familiar with this neurologist and don't want to jump to any conclusions even though he does seem well-versed on his craft.

He said the spinal tap was due to him wanting to rule out something else though he was "99% sure it was MS". I'm terrified of such a serious procedure on a hunch, and would prefer not to flood my body with steroids. He did say that the cervical lesion was slightly more illuminated with the contrast and that the brain lesions were darker and grayer indicating they were older. He pointed out about a half-dozen to me. He scared me in that he kept pushing for me not to wait or delay with the steroids/spinal tap while simultaneously calling my case mild, so I suppose I'm just confused. I've found several MS specialists around where I live, but they all unfortunately have insane wait times (the closest I could get was the end of April). That's worrisome for me as well based on what my neuro said.. I don't know what to do.

[pennstater]

I am sure it is a very unnerving time for you. Don't be afraid to let your neuro know your confusion and ask why the urgency for both the steroids and spinal tap if thinking mild case.

There are studies for many of the DMTs that show the earlier started in disease course, the more effective they are at slowing progression. Maybe this is your neuros objective. Or it could be just that he doesn't want you to stress and have high levels of anxiety for any extended period.

As for the steroids, they just help tame current inflammation, which may or may not result in reduction of symptoms. I am not sure the urgency in taking for sensory symptoms. It could be that some of the DMTs won't allow you to take simultaneously with steroids. So if needed, wants you on/off ASAP. Again, you can ask why the urgency.

Sounds like a decent neuro. You could ask if he thinks a few months delay is significant and why?

You can still schedule the specialist as a 2nd opinion, whether you started meds or not, even if appointment is months out. My first neuro actually recommended a 2nd opinion and when I couldn't get in for months, his office called and had an appointment in a week for me. This helped me accept the diagnosis quickly. Harder to deny .

[jreagan70]

Hi Flute:

My story is kind of convoluted.

Would you believe your story really isn't so convoluted? A lot of MS journeys start the way yours did. Your situation isn't uncommon.

He's done an MRI of my brain and spine and saw a lesion in my cervical area--the one that he says is giving me the problems. He also showed me several other 'old' spots in my brain that he called scars. I've been doing research and found that vitamin deficiencies can mimic MS so I guess I wanted opinions before I took such a big leap.

It sounds like you misunderstood what you read. Deficiencies of vitamin B12 and vitamin D can mimic the symptoms of MS. They don't cause demyelinating lesions in the central nervous system. Those lesions are the "smoking gun" that tell you there's more than vitamin deficiencies going on. If the multiple lesions are characteristic of MS -- and it sounds like they are -- the evidence is already pretty compelling.

I called my PCP today and requested she order me some sort of vitamin test just to be safe as I'm not familiar with this neurologist and don't want to jump to any conclusions

Vitamin deficiencies can make your symptoms -- what you feel -- worse, but they don't cause lesions. Of course you want to rule out anything abnormal that might be affecting your health and how your feel, so appropriate blood tests are sensible. But you can stop looking at vitamin deficiencies as the cause of the lesions.

He said the spinal tap was due to him wanting to rule out something else though he was "99% sure it was MS". I'm terrified of such a serious procedure on a hunch, and would prefer not to flood my body with steroids. He did say that the cervical lesion was slightly more illuminated with the contrast and that the brain lesions were darker and grayer indicating they were older. He pointed out about a half-dozen to me. He scared me in that he kept pushing for me not to wait or delay with the steroids/spinal tap while simultaneously calling my case mild, so I suppose I'm just confused.

Your neurologist isn't recommending the spinal tap on "hunch." It's part of the diagnostic protocol for MS (though it can be bypassed if other evidence pointing to an MS diagnosis is strong). As one of my neurologists explained to me, "If you want your doctors to help you, you have to give them enough information to do that." You can still decide not to do it, but as you decline, bear in mind that there are medical reasons for it.

The illuminated cervical lesion means that that one is actively inflamed. Active lesions "enhance" for about 6, maybe 8 weeks. Steroids are maximally effective in reducing inflammation for only about 2 weeks. They become less effective for the next couple of weeks after that. The effectiveness so rapidly declines after that that a lot of neurologists won't even prescribe steroids after the first 2 weeks of an attack.

Your neurologist is apparently of the school of thought that the best results from a spinal tap come before steroids, so the effect of steroids don't compromise the results (not every neurologist believes that, but that doesn't make your neurologist wrong).

So, since the window of opportunity for steroids to be effective for you is rapidly closing, your neurologist wants you to get them while they might still be effective and beneficial. Which means that the spinal tap would have to be done ASAP so you can get the steroids in the short timeframe. Again, there are sound medical reasons why he's seemingly in such a hurry for you to do it.

No, your symptoms don't have to be treated with steroids. Steroids might make your symptoms go away sooner, but they won't have any effect on the final outcome. So if you're OK with the symptoms you have for as long as they last and don't think the benefit of steroids is worth the risk, you don't have to have them at all. Which takes the urgency out of the timing for the spinal tap.

But there's something else for you to think about. If you're terrified of getting a spinal tap now, do you think you're going to be less terrified if an MS specialist recommends one?

My impression is that, when your neurologist said your case is mild, he chose a word he thought might resonate with you and give you some perspective. I believe he's referring to your presentation at the moment. You don't have debilitating motor symptoms right now, your brain lesions aren't active right now, and they don't appear to be causing you trouble. It may not have been the best word he could have chosen, but it does put some perspective on the situation. So the seeming urgency was tied to the timing of the effectiveness of the steroids -- it wasn't meant to be a contradiction to the "mildness" of your case.

Here's yet another thing for you to think about. Some people hear "spinal tap" and just shut down, cut off communication with the neurologist, and run in the opposite direction, looking for a neurologist who will diagnose them without one. No, you're not the first and you won't be the last.

The problem with that is that the neurologist might go ahead and diagnose if the person would just keep the communication open and tell the doctor they don't want a spinal tap. That alone would take half the stress and drama out of it. (Yes, you have control over the drama.) So do consider finishing up with your current neurologist while waiting for an appointment for a second opinion. And a second opinion about MS is always a good idea. It should just be done as part of a deliberate plan, not as a reaction out of fear.

Plus, this may not seem fair, but not finishing what you started with the first neurologist can make an impression on the second opinion doctor. It can lead to an opinion about your ability to participate in the doctor-patient relationship. It can make the doctor wonder, "Are you going to shut down and not follow your treatment plan if you hear something you don't like?" Doctors would rather not have to struggle with trying to provide appropriate medical care to a patient who won't cooperate and isn't as invested in an optimal outcome as they are.

I've found several MS specialists around where I live, but they all unfortunately have insane wait times (the closest I could get was the end of April).

That's actually quite standard for an MS specialist. For almost all patients, two more months doesn't make any difference. So that's one more thing you can stop worrying about.

[couponlady]

I too had the same symptoms. Numbness, fatigue. Also had spinal tap, my protein was elevated. I wasnt officially diagnosed until I developed optical neuritis. MRI showed brain lesions and cervical demyilination of The nerves.
Don't give up, be assertive and push for answers. Whether it's vitamin deficiency or MS


QUOTE=Flute4Me;1499504]Good morning everyone,

My story is kind of convoluted. I went to the doctor initially about a year ago for a pain in my shoulder. She did all kinds of tests (cat scan, x-ray, etc.) but couldn't find anything. However, she did do a blood test on me and found that my vitamin D levels were so dangerously low they were practically nonexistent. She placed me on a high dosage of vitamin D and retested me and my levels were fine. That was the end of that for now.

Cut to about four months ago. I started having this weird sensation when I looked down where this electrical shot would go down both of my arms, mind you at this point I was no longer on any sort of supplements. I also get these episodes where my hands will get intensely numb and weak--this happened about once a day. I went to a new doctor as I was frustrated with my old one and she immediately referred me to a neurologist. He's done an MRI of my brain and spine and saw a lesion in my cervical area--the one that he says is giving me the problems. He also showed me several other 'old' spots in my brain that he called scars. He immediately ordered a spinal tap for me and a 5 day round of steroids immediately afterward, but I'm still a little uncertain. I've been doing research and found that vitamin deficiencies can mimic MS so I guess I wanted opinions before I took such a big leap.

Thank you so much in advance for your help.[/QUOTE]

[Carolinemf]

Hi,
I agree with all Jreagan said.
It would be in your best interests to follow the advice you've been given. It actually sounds like you may have 'lucked out ' with your neuro .
Get every thing sorted re diagnosis or not so if you are given the choice of treatment (quite a few to choose from now a days) you can give that the attention it needs.
Some people take years to get any type of diagnosis and miss out on possible treatments early as possible so think of this as a good thing.
Many also travel down lifes road for many years with only annoying symptoms to manage rather than major disability so keep positive too.
All the best and look forward to hearing updates.