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What tests should I ask 3rd neuro for? Plz help

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Hayhue
Hayhue

I see my 3rd neurologist tomorrow. What are some good questions to ask or tests to ask for to help find out if it's MS or not?

I really believe I either have fibromyalgia or MS.

Tests I've already had:

- CT/MRI of brain without contrast that was normal.

- CBC/Metabolic was normal except for low thyroid which I now take medicine for.

- RA, Lupus, B12 - normal.

- EKGs, holter monitor, echocardiogram - normal.

- Nerve conduction test (doc said it was small fiber neuropathy but I don't agree that's why I'm going for another opinion.)

- Videonystagmography (Ménière's diagnosis)

- Rotational Testing (""wink

- Vestibular Evoked Myogenic Potential Test (""wink

- Audiogram (""wink

I am at a loss as to what my next step should be. All I know is I'm tired of not being able to walk very far due to imbalance. I'm tired of my thighs cramping, legs twitching, and my legs/arms feeling heavy like anchors. I'm tired of the off and on numbness. If I'm going to live like this then I want answers. Someone please help.

1 like, 9 replies

9 Replies

  • magali34165
    magali34165 Hayhue

    Posted

    SO non of the 2 nueros were able to to tell you what is wrong with you? They were not able to find a thing? 

    I am going to see a 2nd nuero and this makes me even more nervous to  feel like no one can tell me whats wrong with me. 

    What about spinal fluid testing? 

    I think if the nuero relaly thought it was MS they would persue futher testing to determined that, what about seeing a MS specialist and not a nuero? 

    • Hayhue
      Hayhue magali34165

      Posted

      My PCP did the CBC/metabolic, heart tests, and CT/MRI.

      The first neuro was a quack and she said my weight was pressing on my spine. This is as I sat in her office scared to death because my thighs were cramping so bad I could barely walk.

      The second did the antibodies blood work and nerve test and told me it was small fiber neuropathy. However, I do get off and on numbness from time to time in my forearms, shins, right face, and tongue but I do NOT experience burning or typical nerve pain.

      I also can barely walk! My 2nd neuro keeps saying I don't have MS and if I don't that's fine but I have a lot of the symptoms and I just want to feel better already because he gave me NOTHING for it. He said he'd give me something for pain but I don't have pain! I have aches! Cramps! Twitches! I'm having to use wheelchairs when I go in public and they're telling me there's nothing wrong with me?? I'm so upset!

      The vestibular testing I had done by a specialist who is a neurologist in that field.

      I don't even know where to begin go to a MS specialist?

      Don't be nervous. Your doctors may be different than mine. That's why I asked on here for more advice so I can be prepared because I'm fed up.

    • magali34165
      magali34165 Hayhue

      Posted

      My first nero did a MRI with and with out contrast and the results report said this.(this is from December 2015) 

      This is basically what my report says.

      1.tiny t2 flair hyperintense focus within the subcortical white matter of the left frontal lobe just above sylvian fissure NOT associated with mass effect,restricted diffusion, or abnormal enhancement.

      This focus is nonspecfic and can be seen in normal patients. 

      2.Otherwise, normal appearance of the brain

      3. mild nasal septal deviation

      However I still have tingling on my left arm. my right eyelid twitches. I feel lighthead alot, I have trouble sleeping, anxiety. I also got bllod work done, and everything came out good, expect last year low on vitiamin D, which is now normal. 3 weeks ago I took another one blood test and now I am offically prediabetic (not overweight, I am 110lbs) 

      I finally decided to see a second nuero, but next apt is not until August 18. 

      It must be so fusteratiing for you, I hope you find your answer to move on from this or at least to help manage whatever you may have. 

    • fester
      fester Hayhue

      Posted

      Hi hay hue

      Sorry to hear off your problems in neuroligy numbness tingling

      Twichy g spasms electric shock type feeling are all classed as

      Pain so you have pain except the pain killers don't look for a ms diagnosis but look to get better we are all differant how I feel or

      Anyone else have no bearing on you just try and chill out

      And work with the doctors and take care.

  • Misssy2
    Misssy2 Hayhue

    Posted

    3rd Neurologist! Good for you advocating for yourself.

    My sister said the spinal tap is the tell all....she was diagnosed with MS....and had a normal brain MRI and all the other stuff you mention.

    I also have had the MRI but it is not normal...but they say non-specific to MS.

    I am going for another MRI Tues...don't know why...love how they keep everything secret.

    But, yea...go for the spinal tap.

    • Hayhue
      Hayhue Misssy2

      Posted

      Thank you!! I've heard the same thing about the spinal tap.

  • wendy80842
    wendy80842 Hayhue

    Posted

    I'd guess you're in north America, as you're talking about asking for tests. You've mentioned a brain MRI, but not one of the upper spine. My brain MRI's came back with no distinguishable damage to myelin. I had cervical spine MRI'd at the same time that showed a huge collection of lesions, I had my cerebrospinal fluid tested, they found oligoclonic bands. Along with upper spine MRI's I was diagnosed with MS, in 2004. I'm in the UK, by the way. I'd really recommend finding some kind of relaxation techniques, wether or not you have MS, they'll help, at least a little, with the stress of dealing with chronic health problems. Good luck.

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