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Not MS? Or is it? Or what?
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tobra posted:
I will try to make a long story short. For about 2-3 months now, I have had tingling sensations, odd aches and pains all over, numbness in feet, face, and arms, vision distortions, balance problems, fatigue, memory problems, etc. Anyway I saw a neuro and he thought MS, so I set me up for an MRI, (only of brain with and without contrast) which I recently had. It came back normal, and he basically told me I was faking or it was anxiety (which I don't believe it is because I have anxiety medication, which doesn't improve symptoms, in fact may make them worse). But anyhow, he told me to go live my life and see him again in 5 months. I really didn't know much about MS until right now, but it seems to me that a lot of my symptoms point more toward spinal lesions rather than brain lesions (my neuro brought up neck lesions but said he should have seen a ton of brain lesions if there were any on my spine). So yeah, he sent me home and told me to exercise and everything (btw anything that raises my heart rate or causes me to sweat makes my symptoms get worse in the following days, but my neuro brushed that off).

So I really don't know what to do, I don't want to call him back and reschedule earlier, because he already thinks I am making up some of my symptoms. In fact just as I am writing this, I am getting really sharp stabbing pains in my side, and a deep pain in my leg that is radiating down my leg, and it hurts like heck....

I hope I don't have MS, and hopefully there is a much better looking diagnosis for me, but I am still having life-invading symptoms, and no one seems to be taking me for real. What shall I do?
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tobra responded:
Sorry I am new to the site and don't know how to edit a post. I forgot to add that I am a 21 yo male. I had a LP when my first symptom (short stabbing headache on right temple) occurred and came back normal. And also, another symptom that I have daily is strong, altering feelings of extreme heat or extreme cold. And also, twitching in localised spots all over body.
 
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Rory26312 responded:
Hi Tobra

It is possible to have liasions on the spine without them being on the brain and any neuro that says otherwise does not know MS.

Also a negative spinal tap does not rule out MS and the same thing applies.

A second opinion is in order with new MRI's of the brain ,cervical and thorasic spines. You should also have evoked potenial tests along with a full neuro workup by an MS specialist.

Hope this helps and let us know how you are doing,

Rory
 
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hackwriter responded:
Dear Tobra,

As Rory said, you can have spine lesions and no brain lesions when MS first presents; I had that situation with my first flare. An experienced doctor who treats MS knows this and would order both brain and spine MRIs. Another good reason for a spine MRI is that disc herniations and nerve impingement can produce similar symptoms.

When a doctor tells you it's all in your head--and you are already being treated for anxiety--that often impedes further testing. Other conditions need to be ruled out while testing for MS, and you should have that spine MRI. You might consider seeing another doctor.

Kim
 
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tobra replied to hackwriter's response:
Thanks for the replies. I am not being treated for anxiety per se. I get prescribed alprazolam because I sometimes (although rarely) have anxiety, but it has never been an issue in my life. I don't take my anxiety medication very often, only recently once in awhile because when my symptoms first started, I had sleeping difficulties. But, I will ask my psych next appt if this could be anxiety. I just don't see why it would now be making an appearance, I am probably more stress free now than I have ever been. BTW, it would take around 3 months to get an appointment with a different neuro, so would it be better to stay with the one I have now, or try switching? My symptoms aren't improving, if anything they are getting worse.

Also, is it common, or even feasible, that a person with MS would start to have sleep paralysis on a normal basis? I had never had it before, and in the last couple weeks, I have had it probably 10/14 nights.
 
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hackwriter replied to tobra's response:
If you do internet research you will find discussions among MS patients who do experience sleep paralysis. I've provided links to some of those discussions below.

The link below provides an overview of sleep paralysis and some underlying causes (which include anxiety and muscle cramps, narcolepsy and the fact that it can be quite normal and occur in healthy people at any point in their lives):

http://www.webmd.com/sleep-disorders/guide/sleep-paralysis

Here is a link to the medhelp forum where an MS patient has asked a neurologist about sleep paralysis and MS:
http://www.medhelp.org/posts/Neurology/Sleep-paralysis/show/895824

...and a link to the dailystrength MS forum with a similar question and discussion among MS patients who have had that experience: http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/10103014-sleep-paralysis-and-ms

I encourage you to do internet research on MS and sleep paralysis, on sleep paralysis by itself, a search on sleep disorders with neurological conditions, etc., you'll likely find even more discussions, those posted above are just the tip of the iceberg.

Most importantly, tell your doctor about the sleep problems, you might be referred to a sleep clinic for testing.

The doctor switch is entirely up to you, no one but you can discover whether it is better to stay with your doctor or go with a new one. You could actually do both, schedule an appt. with someone else for a second opinion (always a good idea anyway) and see the doc you have now in the interim.

Kim
 
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tobra replied to hackwriter's response:
Thanks for the links.

A couple last questions. First, does anyone have first-hand experience of what Lhermitte's Sign feels like? After reading about it, I may have had it. I have had feelings like someone is reaching in and pinching my spine, usually between the shoulder blades or just below them. Also, a couple of times I have had a painful sensation that feels like someone is pulling a hot needle and thread down my spine.

Also, I always get this buzzy (almost cold chill like feeling in different spots of my body, usually my head and leg(s), but I always get it when I go to the restroom; I get it in my head, face, neck, and upper back (sometimes legs too). This is everytime I unzip look down and begin going. Is this unusual?

Just yesterday, both my right and left ulnar nerve areas were nearly completely numb and tingly for almost 2 hours, I had never had that before.

And lastly, 2 years ago, in retrospect I think I might have had my first symptom; my left eye became lazy-like (it moved unconciously without right eye involvement) and the next morning the left side of my face was much more taut than the right side. Since then, i wake up every morning with the same thing, the right side of my face is a bit saggier than the left. Also, i can't raise my right eyebrow, or close just my left eye (without considerable twitching) and i also have twitching in my left cheek and just above the left side of my lip. Does this seem like something caused by MS?

Thanks for the help, and sorry for flooding you with all this. My neuro only listened to about 5 of the 50 or so abnormal things that had been going on with me in the last few months, so i want to get a little perspective from others before i go to see a doctor again.

JS


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