This Is MS Multiple Sclerosis Knowledge & Support Community

Hello, I'm new here and could use some help. I'm glad I stumbled across this website, because an unbiased opinion might really help me...
Long story short, I've been having a lot of trouble walking, fatigue and pain. About seven years ago I started to slowly become more and more tired and run-down. I would get home from school and immediately fall asleep. I started failing my classes and could no longer be with my friends. I became depressed because of this, but my doctors said my fatigue was a result of my depression. The same thing happened when about four years ago I began to experience unexplained pain. I was first told that I was just depressed, then was told I had TMJ and carpel tunnel. I have an extremely painful pins-and-needles sensation in my feet very often, which I still don't know the reason for. My legs have slowly become weaker and weaker, starting about four years ago. Now I can hardly get out of bed because of my fatigue, and I can hardly walk (without injuring myself, at least). I was rushed to the ER one day about three years ago when I became completely unable to move my legs and was given an EEG and a neurological exam; I was then diagnosed with a conversion disorder. My psychologist disagreed with that, but the diagnosis stuck. I went to a new doctor and was promptly accused of being a drug seeker.
I've FINALLY found a doctor who I feel is wiling to listen to me, but here's where the confusion really comes in... The first time I saw my new doctor, she seemed certain that it was MS. I had previously had an MRI, which came back normal, and she sent me to have an EMG and a nerve conduction study done on my legs. After those tests coming back normal, my doctor then told me... that nothing was wrong with me at all!? She told me that my pain and problems walking were, to quote her, "normal". She had previously told me that if the EMG and nerve study came back normal, she would send me to the hospital for a lumbar puncture and an evoked potential test. I'm wondering mostly why she changed her mind... Is it possible to have MS with a normal MRI, EMG and nerve conduction study? Would an MRI of my spine make it any clearer? I haven't had any routine blood tests done, but I have a physical coming up. Would any blood tests help with a diagnosis? I could defiantly have nothing wrong with me, and I hope that's the case, but I'm just worried what will happen if we overlook something important... Thanks for your help in advance!

NightstarNuzzle wrote:Hello, I'm new here and could use some help. I'm glad I stumbled across this website, because an unbiased opinion might really help me...
Long story short, I've been having a lot of trouble walking, fatigue and pain. About seven years ago I started to slowly become more and more tired and run-down. I would get home from school and immediately fall asleep. I started failing my classes and could no longer be with my friends. I became depressed because of this, but my doctors said my fatigue was a result of my depression. The same thing happened when about four years ago I began to experience unexplained pain. I was first told that I was just depressed, then was told I had TMJ and carpel tunnel. I have an extremely painful pins-and-needles sensation in my feet very often, which I still don't know the reason for. My legs have slowly become weaker and weaker, starting about four years ago. Now I can hardly get out of bed because of my fatigue, and I can hardly walk (without injuring myself, at least). I was rushed to the ER one day about three years ago when I became completely unable to move my legs and was given an EEG and a neurological exam; I was then diagnosed with a conversion disorder. My psychologist disagreed with that, but the diagnosis stuck. I went to a new doctor and was promptly accused of being a drug seeker.
I've FINALLY found a doctor who I feel is wiling to listen to me, but here's where the confusion really comes in... The first time I saw my new doctor, she seemed certain that it was MS. I had previously had an MRI, which came back normal, and she sent me to have an EMG and a nerve conduction study done on my legs. After those tests coming back normal, my doctor then told me... that nothing was wrong with me at all!? She told me that my pain and problems walking were, to quote her, "normal". She had previously told me that if the EMG and nerve study came back normal, she would send me to the hospital for a lumbar puncture and an evoked potential test. I'm wondering mostly why she changed her mind... Is it possible to have MS with a normal MRI, EMG and nerve conduction study? (It is absolutely possible to have MS and normal test results.) Would an MRI of my spine make it any clearer? (Not necessarily. There is no definitive test to diagnose MS.) I haven't had any routine blood tests done, but I have a physical coming up. Would any blood tests help with a diagnosis? (In my opinion, I think so.) I could defiantly have nothing wrong with me, and I hope that's the case, but I'm just worried what will happen if we overlook something important... Thanks for your help in advance!

Welcome to ThisIsMS, NightstarNuzzle.

At the risk of boring fellow members here who have heard this before, I offer you my suggestions since you asked for an opinion (I have no medical background):

All your symptoms are common to many conditions, including MS and others. MS is a diagnosis of exclusion, made only after other more likely possibilities have been ruled out. Since all your symptoms are consistent with B12 deficiency (by the way, "painful pins-and-needles sensation in the feet" is called "peripheral neuropathy" and is the most commonly reported symptom of B12 deficiency) and since it is estimated that 40% of the American population has suboptimal vitamin B12 levels and since screening for deficiency is relatively easy and inexpensive (compared to most neurological testing), I suggest you consider starting there.

Any person at any age can develop a 12 deficiency.
Do not take any vitamin B supplements before testing, as this will skew test results.
Initial testing should include: #1 a serum B12 test (the newer, more accurate test is the HoloTc test, but this is not yet available everywhere); #2 a serum or RBC folate test; #3 a serum homocysteine test; and #4 a methylmalonic acid test (this is either a blood test or a urine test, although some experts believe the urinary form is more accurate). Any doctor, even your GP, can order these tests.
Request your own copy of any test results – it is important to have the actual numbers.

If a possible B12 deficiency can be eliminated, your medical team can move on to investigate the many other possibilities: other nutrient deficiencies, thyroid, liver, kidney, vascular, blood sugar problems, Lyme disease,celiac disease, etc. – there are lots of conditions to investigate.

Your symptoms are NOT normal – you know your body best. You are wise to investigate possible causes. We wish you the best, please let us know how it goes. You have joined us here at ThisIsMS, we are glad to share our opinions when asked.

NightstarNuzzle wrote:Is it possible to have MS with a normal MRI, EMG and nerve conduction study? Would an MRI of my spine make it any clearer?

Welcome to ThisIsMS. Based on your question, I'm guessing that you didn't get an MRI of your spine. With MS, it's possible to have lesions on your spine and not in your brain. This is why a typical MS MRI includes both the cervical spine and the brain.

However, I agree with Lyndacarol. It's best to get tested for a vitamin B12 deficiency and eliminate that as a possibility before going on to other tests. The cost for B12 testing is the proverbial drop in the bucket compared to another MRI.

Thanks for the replies! I have a physical exam coming up in about 10 days, and I'll be sure to ask my doctor about B12 deficiency and make sure that she tests my vitamin levels. I'll let you know how it goes as soon as the test results come back. I'd much rather have a blood test than to have to go through another MRI haha

Hi,

Also, at the risk of boring regulars can I suggest the following.
Firstly, without dismissing MS, drop all the labels. There's clearly a problem but labels sometimes confuse rather than help to get to the bottom of things. If it's not an identifiable disease then go back to symptoms and get a few simple blood tests done. Your problem could be metabolic, the result of infection, the result of nutritional deficiencies for a number of reasons or an autoimmune problem.
Have a fasting amino acid test done and look if you are deficient in any of them. That clearly can point to something. Also get a uric acid test and see how low you are against the range. You can learn a lot from these if your medical people are any good.
Check for mycoplasmas, chlamydia's, EBV, Lyme if you are in an infected area and any other infections that your doctor thinks might be a chance. Infections can scavenge amino acids and you get a double whammy. If something turns up and your doctor ignores it then , by all means, come back.
It sounds you are trying to find a target. Go for the most complete picture and work back from that.
Regards

Scott1 wrote: Firstly, without dismissing MS, drop all the labels. There's clearly a problem but labels sometimes confuse rather than help to get to the bottom of things. If it's not an identifiable disease then go back to symptoms and get a few simple blood tests done. Your problem could be metabolic, the result of infection, the result of nutritional deficiencies for a number of reasons or an autoimmune problem.

Very good point, actually... I guess the main reason I use the labels I do is because my doctor used those labels when talking to me hehe. Thanks, though, you have a really good point and I'll talk to my doctor about all this and see if I can get this stuff checked out! The last time I had blood testing was about 2 years ago and it wasn't a complete blood count. I don't think I've ever had a metabolic panel done. I didn't even think of this until you brought it up, actually. I have a full physical exam and blood work coming up soon, so hopefully that'll help with a diagnosis!