Multiple Sclerosis or something else?

[heather8602]

I have been struggling for quite some time with numbness in my feet and lower legs. It is the worst in the morning when I wake. I can hardly walk and it burns and hurts terribly. I also have been really struggling with my memory and balance and some days I feel completely incompetent. I have extremely cold hands and feet but my feet are probably the worst in terms of temperature. I have had a bad pain when walking in my left foot on the little toe and toe next to this. I work as a social worker at a hospital and was taken to the ER in December of 13 due to complete numbness. They proceeded to do an MRI without contrast and a series of blood work. The MRI came back okay as well as all the blood work. My family doctor still referred me to a neurologist where I was clinically evaluated. He suspected MS but said he the negative MRI made him not think this was the case. He did lots of blood work to test for various autoimmune disorders as well as cancer. All came back okay. I have a follow up appointment in 2 months. I am feeling really nervous and I know something is not right with my body but all of these negative tests are making me feel foolish. I have recently been having a lot of pain in my legs and at night I feel twitchy and feel the urge to itch and move my legs. I have also been to the eye doctor recently and have significant vision loss in my right eye. I have some macular edema going on however that they are treating with eye drops to see if my vision improves. I do not know what to think and feel anymore. I do not know what is going on with my body. Has anyone experienced this before? Can anyone shed some light on what I am going through? I really do not know how to feel anymore.

[kwarendorf]

Hi Heather -

Unfortunately there are often more questions than answers.Diagnosing neurological problems can be a long and frustrating process. My guess is that if you have seen both an opthamologist and a neurologist, complaining of decreased vision in your right eye, that your optic nerve has been checked out. That would seem to point back to the edema, rather than MS. A clear brain MRI would tend to move focus away from MS as the cause of your vision issues as well.  

Your foot and leg issues could, in theory, be the result of a lesion on your t-spine. I kinda doubt it though. I think MS folks with t-spine only lesions are the exception rather than the rule.

I think you should keep a journal of your "stuff" between now and the appointment in  2 months. If it is MS, be assured that very little will happen in the next 2 months. It moves pretty slowly :-)

Keep us posted.

Kyle

[heather8602]

Thank You Corrie…

The eye doctor said the edema was probably related to an inflammatory process in my body and encouraged me to follow up with my neurologist. I don't believe he looked at my optic nerve, however.

I really appreciate the support. I am hoping to find some answers soon.

[Corriel]

Hi Heather, I don't have much to add that Kyle has not already covered but I did want to mention that MS was responsible for my vision loss but there was no damage to the optic nerve in my case. I think most eye docs can take a photo of the eye and can see the nerve.

Not sure if MS can cause the eye edema though. In my case my eyes/optic nerves were perfect so the vision loss I had was attributed to a brain lesion hitting in an odd spot which is apparently not typical for MS.

You know your body better than anyone so hang in there and do not woory too much about feeling foolish. Squeaky wheel gets the grease after all. When something is wrong you need to know what is going on.

Corrie

[heather8602]

Hi There Kyle-
Thank you for responding!

I am not positive if they looked at my optic nerve or not…is this something the eye doctor can do when completing the exam? Is this standard practice for them to look at this?
As for the MRI…I had a c-spine and brain MRI while in the E.R. My neurologist is at the Illinois neurological institute in Peoria, Illinois. They work a lot with MS. I feel like they do not give me very clear answers to the questions I ask about what is going on with my body.  I realize that MS and other neurological conditions are sometimes hard to diagnose but I feel like I am walking blindly right now.

[kwarendorf]

Hi Heather - Welcome to our group.

Trying to sort through all this stuff can be dizzying. It is quite possible that you have more than one thing going on, rather than a single cause for all your symptoms.

Some, if not all, of your symptoms can be caused by MS. My first ever MS symptom was bilateral numbness in my feet. I also have neuropathic pain in my feet, although the left is much worse than the right. So your symptoms are in the ball park.

If your vision issues were being cause by MS there would be evidence of inflammation on your optic nerve. This is different than the macular edema you mentioned. I am assuming they have evaluated your optic nerve.

You mention that the neuro was hesitant to pursue MS as there were no lesions found on your MRI. Was the MRI of you brain only? If so, MS lesions can appear anywhere throughout the central nervous system. This includes the cervical and thoracic spine. If you haven't had the spine MRI's that may be a next step. (While with and w/o contrast is the MS standard, all lesions will show up without contrast. All the contrast does is show any of the lesions that happen to be active.)

MS is first and foremost a clinical diagnosis. The neuro suspected MS based on his clinical findings. Was he an MS specialist? Would he be in agreement about spine MRI?

Keep us posted :-)

Kyle