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Recently diagnosed with MS?
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JamesinCNY posted:
A car accident started all of this and side effects led my regular physical told me MS so he sent me to a neurologist. Test after test and diagnoses of a mild form of Stevens-Johnson Syndrome (from taking Celebrex). During the testing for that the MRI revealed a "Significant loss of white matter suggesting MS" Still waiting for bloodwork to come back from Mayo Clinic and some tests have revealed abnormalities.Had Spinal Tap, Nerve Conductivity tests (they only hurt when the nerves are actually working lol) MRI's CT's, X-Rays.
My last Doctor visit worried me as the neurologist said "I am not convinced it is MS" Thing is, looking back I can see where I had had flare ups before but was never diagnosed due to mimicking other diseases. Have been told I had Lyme disease (not true) Arthritis and told take aspirin/Tylenol for pain.The last 20 years I have experienced times of extreme fatigue and my intolerance for heat has become increasingly difficult. Anything above 60 and I want to dive in ice water.
Major symptoms plaguing me now are:
Neuropathy covering my face, complete right leg (I have not been able to feel my foot for 4 months now), left leg from shin down to toes, both hands, left arm to shoulder, right arm to elbow, genitals, back and neck. It constantly feels like someone is lighting a match and immediately shoving it on my skin. Lyrica is helping but it does not take it away..it is always there and heat or touching it makes it worse. I fall a lot due to feeling like I am being tugged to the left. Blurred vision that comes and goes, it's like with the neuropathy, it comes in waves and sometimes I can only make out colors and no shapes(very frustrating when I love doing counted cross stitch) sexual dysfunction from neuropathy (it burns more than feels good and orgasms are barely felt. My speech is affected by slurring and my thoughts locking up. I know what I want to say but the word that should come next has no meaning. Communicating is frustrating to me because I hate not being able to talk normally, I often get confused and noises become so loud they are unbearable or they fade in and out making hearing anything being said difficult.. Muscle spasms that are so bad I believe some to be seizures. I can not breathe or move and was passing out frequently due to not being able to breathe for long moments of time. That has gotten better with medication, Klonopin every 4 hrs, but they are still there. I still notice the spasms in my tongue which make eating difficult, down to one meal a day and snacks when I can get a chance. I keep getting told I am getting better but I feel worse than I have ever felt. So tired all the time. Passing out even after drinking 2 pots of black coffee.
I am hoping one day I will wake up and this will be all better but I am losing hope in ever regaining what I had before all of this started. My right leg feels dead most of the time and cognitive functions have not gotten better but keep getting worse.
My Doctor is now talking of sending me to Chicago or Boston because he just isn't sure what to do as I am having strange reactions to medications now from the SJS. Only can have 1 new thing at a time and some time they hit me twice as strong...others it feels like I took nothing.

Maybe someone else has had these symptoms and can help me. I ask but I don't feel like I am being told everything. Then again I know the way I think has changed and that I find myself getting very angry not just at myself for what is going on but at others because they don't have to live like this. hurting all the time and slowly watching everything disappear that you worked so hard for.
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hackwriter responded:
Truly sorry that you are suffering. I hope another team of specialists can figure this out for you, sounds like they have quite a challenge.

Though I can relate to many of the symptoms you describe, some others not so much. But MS affects us all differently. Anxiety can certainly worsen already existing symptoms.

The diagnostic phase of any disease is the worst part. Anger and frustration are normal things to feel. Please let us know how this turns out for you.

Kim
 
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lovesweinerdogs responded:
Bless your heart! I feel for you, hon. I hear the anger and frustration in your words and understand what you're going through.

Hackwriter is right-this is the frustrating part-the waiting and not knowing. We are all experiencing or have experienced the same feelings.

Hang in there. This forum has given me a sense of community because it's made up of people that share their pain, joy, love and humor freely.

Dawn
 
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JamesinCNY replied to lovesweinerdogs's response:
I am angry that I am losing my mind, memories, and ability to communicate verbally. everything else I can handle, to a degree. My main quest is finding some kind of support group locally for me and my family. the onset of this was so fast that I went from no signs or symptoms to wheelchair and walker (I fight it but I get too tired sometimes and have to use the wheelchair, trouble talking, thinking, falling, and more...just seems more things are happening and Doctor's are just scratching their heads
 
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lovesweinerdogs replied to JamesinCNY's response:
I know what you mean! To add to the confusion and frustration, when doctors learn of the mental issues, the ones I've had tend to start thinking you are exagerating or obsessing on your symtoms!

For a support group, try asking your local ministerial alliance or even your doctor's receptionist. Here in our small town, our doctor's office knows absolutely everyone.

Good luck, and don't forget to get plenty of rest and sleep-that is so very important.

Dawn


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