I am crazy?!

[Kim610]

Hi. I am trying to decide if I need to keep pushing doctors for answers or just move on and see what happens.  I am 40 years old and really had no major health problems prior to last summer. I started having numbness in my right foot that lasted for about a week.  I ignored it. A couple of months later, the numbness and tingling started in my left foot and moved up to my knee. I didn't do anything about it, but started worrying about peripheral neuropathy.

A few months after that I had numbness and tingling in both legs up to my thighs and a few days later, in my left arm and hand. I also had a lot of burning in my arm and legs and some arm weakness, severe fatigue and mild dizziness.  I went to my PCP, who referred me to a neuro after some basic blood tests. The symptoms have since improved, but late in the day or when I am hot or stressed, they come back, though not as strong.

I also now have a lot of muscle pain in my arms and some in my legs, mostly in the evening.  My muscles are very tight. The pain makes me think fibromyalgia, but all this started with just tingling, do I don't know.

I had a neurological exam that was normal, aside from hyperreflexia.  Last week I had an MRI of brain and cervical spine with contrast that the nurse told me was normal except for a few mild bulging disks in my neck, which shouldn't be causing my symptoms. There was no mention of what to do next.

I've had all conceivable blood tests and nerve conduction to rule things out, all normal except for a mildly elevated SED rate that the doctor said was nothing.  

I feel like I am obsessing about my health right now and I don't like doing that, but I really can't handle not knowing what's going on.  A very well respected neurologist friend of a friend thought it was probably ms, so I was a little surprised at the normal MRI!

Is it crazy to think that I could still have ms? Is it even possible to have a normal MRI, even in the beginning? Both neurologists told me that if its not ms, they have no idea what it could be! Could a spinal tap be helpful? Should I just forget about figuring this out now and wait and see if things get better for worse?  Any advice or opinions would be appreciated!

Thanks!

[Kim610]

It's nice to know I'm not alone! I'm not happy with this neurologist or practice.  They rescheduled my appointment without letting me know, they charge for copies of records, and the doctor is too busy to talk to me herself. her "diagnosis" was paresthesia. That's like saying your diagnosis is a fever. That's just a symptom! She just said see you in 6 months, even before my MRI, and didn't say a word about what to do next or what could be wrong. I felt abandoned and like my problems were just dismissed. Am I asking too much?

I might try to see a new neuro, just to be sure.  There was still no MRI of my thoracic spine and no spinal tap. I feel like my neuro exam may not be normal right now. My left leg is extremely tensed up, giving me a slight limp.  It's hard to forget about this when I am getting new and upsetting symptoms. I'll see what my PCP has to say!

Thanks

[Jim_1971]

Your story is so like mine - which I've just posted on this forum.  Sorry it doesn't help you, beyond the fact it show you're not alone.

[HVAC]

If inflammation was causing symptoms then neurological exams could change when inflammation dies down. There is nothing wrong with finding a MS Specialist. I went to headache specialist and she missed the MS. I am not a doctor shopper but you need a specialist you can work with. I have had 4 neurologists until I found the one I work with best. I have had three oncologists. You have to be a team and hopefully over time.

Alex

[Kim610]

Thanks Alex. I will go back to the neuro in six months because she prescribed gabapentin for the nerve pain.  I think Lyme was in the mix of tests.  At the time of neuro exam, I wasn't really having any symptoms. Does that make any difference? Does the hyperreflexia mean anything? I don't think this doctor treats ms often, but I'm afraid that if I try to see another neuro I will look like trying to get a diagnosis of ms, which they won't appreciate. I'm normally the opposite of pushy, so it's hard for me to decide to fight for something. I also hate the idea of looking whiny or overly anxious. An answer of some kind would be nice though!

[HVAC]

Is the neurologist following you over time like every six months? Yes you can have MS with a normal MRI. The only thing that sticks out to me is the normal neuro exam. If it were MS it should show it with the neuro exam. The only thing you can do is be followed over time. I know that is not a good answer. Have you been tested for Lyme?

Medicine is more art than science you have to see the right specialist with the right set of symptoms for a diagnosis.The good news is you do not have to have a diagnosis to treat MS like symptoms. You can have medication for nerve pain and muscle relaxers for muscle spasms or PT.

Not all neurologists know about MS. You could see a MS Specialist. With the MRI and neuro exam it might be the same answer.

Alex