Undiagnosed, don't know what to do

New diagnosis and before diagnosis
1

Hi. I’ve been feeling some weird symptoms and I’m in the process of being diagnosed. But first of all, I really want to say I love this community. I don’t know if I have or if someday will have MS. Even if I don’t, in the last month I learned so much about this disease, I read so many stories, and I admire you all. I want to be involved with people who suffer from this, I want to donate, I feel an urge to help my national ms center. Really, guys. You are an inspiration to me, even I am diagnosed maybe I’ll accept it with your strength and fight the right way and with hope.

I’m male, 24 years.

In the beginning of the year, I felt some coordination problems when walking, for 2 weeks. It was not visible, I just felt something was wrong, maybe the sensation when touching the trousers. It was weird. It went away.

In October 12, I began to feel the same symptom. For 4 days, it was just it. Then my left leg started to feel strange, like it was weak. I could perform all the movements, though. So that was the day I started googling. And I found out about multiple sclerosis. In the next several days I was feeling very anxious about it. In that week, the symptoms evolved to: numbness in my left leg (2 days), left arm felt weak, pins and needles mainly in left leg and arm, point of the fingers had periods of more sensitivity, sometimes burning sensation in my left arm; and always the abnormal coordination while walking, the most constant symptom, and I’m still dealing with it (and odd sensation in left foot, while walking). Also, 3 of these days, in that worst week and the week after, I felt some kind of leg pain, one day in both legs, like the “needles” were stronger. In some days, this symptoms has intensity variations during the day; in the majority of cases, it didn’t have a connection to doing more exercise. Also, last symptom that I remember, some tongue tingling, for 4 or 5 days - that was definitely weird

Also, some additional context:

  1. 3 months ago, I had a strange memory lapse. Difficult to explain, but basically I had witnesses (my parents also, so they were not kidding) who saw me participating in something that I didn’t remembered doing literally 2 minutes earlier.

  2. Also, 2 months ago I made a bike journey of 3 days, it was very intense, and I almost never walk on the bike. But I felt absolutely normal for the month after that.

  3. I’ve been feeling stressed for the last 5 years, and sometimes I’ve been anxious, but I’ve never felt nothing like this before.

So first I went to my GP. She went directly to the point: do a brain MRI. While I was waiting to do it, I went to a private neurologist because the symptoms were worsening: he thought maybe could be a myelitis, or disc hernea, and prescribed me 2 MRI (cervical and lumbar) - he said it could be urgent. So I went to the ER of the public hospital: there they just said it was anxiety.

I had not the money to do 3 MRI, so I just went with the GP opinion, and did the brain MRI. A few days later: clean MRI. So the GP just said that it was definitely anxiety, though I was not feeling anxious in the last 2 weeks and I still felt most of the symptoms.

I went to an orthopedist, because my mom wanted me too. He just said to the a complete blood test (b12, d3, some inflamation/infection markers), and a few x-ray to my spine, to see if my scoliosis is worst (oh, I didn’t mention, I have scoliosis). I did the blood test. Everything normal, except D3, that is insufficient. I didn’t did the x-rays, because I hate radiation exposure, and I’m delaying it.

What should I do. What are the odds of having MS? Clean brain MRI. But vitamin D deficiency, the symptoms relate. What should I do next? I want to convince my GP that I need several other tests (cervical mri, lumbar puncture). I tried to ask her to make an appointment in a public hospital neurologist, but she refused to. My main fear is that, in the several months, the disease evolves and I’m not doing nothing to stop it. I don’t have the money to keep searching for myself, appointing more MRIs and pay them in a private hospital, etc - but the public system isn’t helping me much. What should I do? If I hadn’t the money issue, should I do more exams in a private hospital?

I love you. I respect you. Keep fighting, you’re an inspiration to me even if I end up not being diagnosed.

2

Are you in the U.K.? Or somewhere else. The health care system is obviously quite different country to country. If you are in the U.K. It sounds like you don’t have the money to continue the private tests so I probably put that on the burner for a bit. If i was in your position, id go back to my GP and explain that you are still having worrying symptoms which are causing you physical pain and also hurting you emotionally. Il be honest, a clear MRI is not the norm from people expected to have MS, yes there may be anomalies on this front but a clear MRI is a good sign. Nevertheless I don’t think that a brain MRI is sufficient alone, it encompasses only a portion of the central nervous system. If you were telling me that the spine was also clear that’s a different story.

TBH none of that matters, you feel crap, are having rubbish symptoms and should be asking for a neurology referral. Good luck.

3

Sometimes a vitamin D deficiency can mimic MS. So maybe give it a couple of weeks with supplements that I assume have been prescribed by your GP and see if that makes things seem a bit better. Having said that, a vitamin D deficiency can also be present with people who are diagnosed with MS too.

In the meantime, try writing yourself a diary of things that have happened and when. Write down how long symptoms have lasted and whether they’ve entirely dissipated or whether anything has stayed with you.

In the absence of brain lesions, at this point it doesn’t sound like further investigation is necessary, but see how you feel after a couple of weeks. Ultimately, if you can show your GP sufficient evidence that you should be referred to a neurologist, then they’ll have to do it.

Sue

4

Thank you for your input. I’m in Portugal. Thank you very much for your kind words. I’ll keep you updated

1 Like
5

Thank you Sue. Can you give me a source to that info, about the possibility of vitamin mimic MS? I can’t find that.

Thank you for your opinion, very appreciated!

6

Hi

The trouble is that it’s all anecdotal. So I’m reluctant to say oh look here. If you do a (dreadful advice usually) google search on Vitamin D deficiency and MS, you will find lots of different bits and pieces that added up together seems to indicate to a non medical professional like me, that there is evidence that some people have a vitamin D deficiency which looks like MS. So while I wouldn’t direct you to one specific place, there are so many different reports that it’s possible to believe it.

Sue

7

Hi James, sorry to hear everything you’re going through. What exactly did you mean by more sensitivity in the points of your fingers? I’ve had some similar symptoms and just want to see if we’re experiencing the same thing

8

Hi! It was mainly while I was typing on the keyboard, just for a few hours for a couple of days. It was not “tingling”, not so evident as that. I cannot express better in english, sorry!!

9

I noticed my symptoms when typing as well. Every time i would hit a key i would get this kind of shock sensation in my fingertip. Same thing would happen if i tapped my phone screen. It kind of felt like there was some exposed nerve in my fingertip that would get zapped or shocked every time i tapped something. I didnt have any constant numbness or tingling though, i only noticed it when i tapped on something. Is this similar to what you experienced? Ive searched everywhere online and havent been able to find anyone else with similar symptoms!

10

Yeah. But not like a shock; it’s just like the material I’m touching have a different texture. But I only feel that sensation (I could define it as increased sensibility?) when I touch something (cloths, keyboard, etc)

11

Yeah that sounds kind of similar. I only felt the sensations when tapping or rubbing against something but i mostly got a nerve shock or tingling feeling. Anyways, i hope you get some answers soon. Hopefully it is something as simple as a vitman deficiency and you’re back in good health soon!

12

Thanks, jwolff. I hope so, too. In the meantime, I convinced my GP to make an appointment in a public hospital, so I’m waiting for that at the moment (still don’t know the date).

When have you been diagnosed, and how are you?

13

I’m actually undiagnosed as well. I don’t know what is going on with me haha. I saw a neurologist who thinks it is nothing but i’m still having lots of weird symptoms. It’s really frustrating not having any answers so i can definitely empathize with you

14

That’s one of the things that bothers me the most: what’s the probability of being ? It’s probably , right? Wishing the best to you!

15

google vitamin D deficiency. there are loads of links the healthline one - 8 symptoms of vitamin D deficiency is good, covering muscle pain, bone loss, depression and more. here’s hoping it is just vitamin D deficiency!

16

I think about that all the time and it scares me to death. At least you have a clean brain MRI, that’s really good news. All the best to you to James, let us know how everything turns out!