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I've been trying to get a diagnosis for over a year. The doctors thought I had an orthopedic problem, then another orthopedic problem, then a neurological problem, then another neurological problem, then an orthopedic problem again. My symptoms kept getting more severe and more widespread, and now my GP and neurologist are both sure that there's something systemic going on and that I don't have an orthopedic problem.

Recent symptoms have included the following:
* Pain (burning, stabbing, dull aches, etc.) primarily in my feet and calves; no swelling, redness, etc.
* Numbness, pins and needles, and electric shocks in my left hand (diagnosed as carpal tunnel)
* Neck stiffness, sometimes severe, often with muscle tightness around neck, and shoulder and upper back pain
* Tongue sore all over for 1 to 2 days at a time; sometimes tongue feels thick or heavy; occasional slurred speech just for a minute
* Unusual sweating, including night sweats and being in a sweat for about an hour no matter what the temperature is (and I don't have a fever)
* Hyperreflexia (was not present in August but has been present in four exams since January)
* Lightheadedness
* Severe fatigue when I perform normal activities, such as going to the grocery store

In regards to recent tests and exams:
* I've had all sorts of bloodwork done and everything came back normal, except a general indicator of inflammation was high. I was already on 4000 units of vitamin D a day, and I have recently started taking extra B12 as well just to be safe.
* I've had EMGs/nerve conduction tests on my arms and legs. Leg test was normal, arm test showed mild carpal tunnel in my left arm and everything else was normal.
* I've had cervical and lumbar spine MRIs (without contrast) and they showed some mild disk issues but nothing that would explain all these symptoms.
* I just had brain and thoracic spine MRIs (without and with contrast) on Saturday and am waiting for results.
* I had a completely normal neurological evaluation in August. Since January I have had limited neurological testing from multiple doctors, and all found that I had hyperreflexia and poor balance.

So I am waiting for results from my latest MRIs, which are either going to confirm that something bad is going on, or are going to show nothing and leave me without a clue what to do next.

I'm an absolute wreck this morning. I am dreading getting the results but I'm also eager to get them. I want to know what is going on but I don't want it to be anything bad. I guess at this point it's highly unlikely that it isn't going to be something "bad". I spent a few hours on Saturday looking through my MRI images and there is nothing glaringly obvious in the images (no large tumors, etc.) But of course I don't know how to recognize anything subtle. I'm also worried that the MRI isn't going to show anything definitive, or that the neurologist will be unwilling to initiate any treatment at this time because she won't be confident of a diagnosis. I am terrified that I am incurring permanent damage every day and that I need treatment ASAP to stop or slow the damage.

How do you all cope with this? I'm losing my mind.

I'm in the same 'undiagnosed' boat as you and really can't add anything accept my heartfelt wishes that you get better and feel better. It is so hard to feel as though you are falling apart and have no idea why or what your prognosis is. My MRI is tomorrow morning and I'm working hard to cope with panic and dread. What has helped me so far is doing the best I can to breathe slowly and deeply when the anxiety feels paralyzing and trying to take it one moment, minute, hour at a time. I also have been doing positive visualizations to see myself getting better from *whatever* this thing is. I'm sure other people will respond but I want you to know that I hear you and understand. I'm so sorry. Sending healing to you.

SnappyK wrote:In regards to recent tests and exams:
* I've had all sorts of bloodwork done and everything came back normal, except a general indicator of inflammation was high. I was already on 4000 units of vitamin D a day, and I have recently started taking extra B12 as well just to be safe.
* I've had EMGs/nerve conduction tests on my arms and legs. Leg test was normal, arm test showed mild carpal tunnel in my left arm and everything else was normal.
* I've had cervical and lumbar spine MRIs (without contrast) and they showed some mild disk issues but nothing that would explain all these symptoms.
* I just had brain and thoracic spine MRIs (without and with contrast) on Saturday and am waiting for results.
* I had a completely normal neurological evaluation in August. Since January I have had limited neurological testing from multiple doctors, and all found that I had hyperreflexia and poor balance.

So I am waiting for results from my latest MRIs, which are either going to confirm that something bad is going on, or are going to show nothing and leave me without a clue what to do next.

I'm an absolute wreck this morning. I am dreading getting the results but I'm also eager to get them. I want to know what is going on but I don't want it to be anything bad. I guess at this point it's highly unlikely that it isn't going to be something "bad". I spent a few hours on Saturday looking through my MRI images and there is nothing glaringly obvious in the images (no large tumors, etc.) But of course I don't know how to recognize anything subtle. I'm also worried that the MRI isn't going to show anything definitive, or that the neurologist will be unwilling to initiate any treatment at this time because she won't be confident of a diagnosis. I am terrified that I am incurring permanent damage every day and that I need treatment ASAP to stop or slow the damage.

How do you all cope with this? I'm losing my mind.

Welcome to ThisIsMS, SnappyK.

In "all sorts of bloodwork done" I assume this included a vitamin D test (a.k.a. 25-hydroxy D test) and initial vitamin B12 testing. I am unclear whether you took B12 and vitamin D supplements before testing or after the test results showed deficiencies. Taking supplements before testing will skew the test results.

Your symptoms are consistent with many conditions, including nutrient deficiencies. MS is a diagnosis of exclusion, only considered after the other more likely possibilities have been ruled out. There is no definitive test (not even lesions, MRIs, or spinal taps) for MS.

Thanks for your response! Sorry I wasn't clearer. I have had my vitamin D tested a few times a year for several years because of low levels and was originally on 2000 units a day, then upped to 4000 units a year ago. I do not stop taking the supplements before tests, and my D level is usually in the high 40s, sometimes higher. As for B12, I was tested the day before I started taking the B12. My level was 487. I know that's considered OK by some and not OK by others. I am now taking 500 mcg a day to supplement that just in case it was too low for me.

My GP tested me for several types of tick-borne illnesses and did "standard" bloodwork: CBC, ANA, CPK, RF titer, thyroid, etc. Nothing showed anything out of the normal ranges except for the HS-CRP, which came back as 34.6 mg/L. I understand that in my case, that most likely translates to mild inflammation.

Based on all my test results to date and the progression of symptoms over the past several months, my neurologist is concerned that I have a demyelinating disease. She has not been any more specific than that yet. My hope is that the MRI would show something that, while not necessarily giving her a crystal-clear diagnosis, could at least point me in the right direction for getting some sort of treatment. The lightheadedness in particular is becoming a major problem, making it difficult for me to do daily tasks and drive my car.

SnappyK wrote:I have had my vitamin D tested a few times a year for several years because of low levels and was originally on 2000 units a day, then upped to 4000 units a year ago. I do not stop taking the supplements before tests, and my D level is usually in the high 40s, sometimes higher. As for B12, I was tested the day before I started taking the B12. My level was 487. I know that's considered OK by some and not OK by others. I am now taking 500 mcg a day to supplement that just in case it was too low for me.

The GrassrootsHealth organization (http://www.GrassrootsHealth.net) and most vitamin D experts today recommend that people maintain vitamin D levels between 40-60 ng/mL – so yours sounds good. However, I have heard of some neurologists that recommend a serum level closer to 100 ng/mL for people who have neurological symptoms. The Brazilian neurologist, Dr. Cicero Galli Coimbra, says that many people with neurological symptoms (or with even a diagnosis of MS) are resistant to vitamin D and require much higher doses. (There is even a subforum here dedicated to the Coimbra Protocol, http://www.thisisms.com/forum/coimbra-h ... tocol-f57/)

As for vitamin B12, if your doctor recommended 500 µg a day, be aware that the methylcobalamin form is more bioavailable than cyanocobalamin, which is cheaper, but must be decyanated by the body before it can be used. Also, since vitamin B12 is water-soluble, non-toxic, inexpensive, and easily found in 1000 µg doses (and higher); and any excess that the body does not use is flushed out in urine, you might consider a trial of higher dose B12 with your doctor's approval.

Thanks, that's really helpful information on the B12. I am indeed using cyanocobalamin instead of methylcobalamin, so I will look for the latter the next time I go to the store. I am still waiting for MRI results. In the meantime, I've become overwhelmed by lightheadedness and a feeling of being disconnected. I'm thinking about trying to see my GP today to see if there's anything she can do to help with these symptoms. Working is becoming very difficult and I'm self employed, so there is no sick time for me.