Hello from the Land of Enchantment

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Hello from the Land of Enchantment

Postby Susie54 » Sun Aug 30, 2009 11:00 am

Hi Everyone,

My name is Susie, and I live in Albuquerque. I am 55 years old.

I've be dealing with MS-like symptoms since last summer. I had two visual field cuts (lasting a few minutes), same eye, same pattern separated by two months. That's what first took me to my GP. Since I am a heart patient my GP and cardiologist presumed that I was throwing emboli, and I began anticoagulation therapy last December. This therapy was initiated despite the fact that MRI/MRA, transesophageal echo, and echocardiogram revealed no evidence of thrombi/emboli.

As early as last November I began experiencing episodes of utter fatigue that would last for 3-7 days and then disappear. Last February I began to notice muscle tightening in my right leg.

Quite suddenly in April my symptoms became much worse and have continued to worsen over the summer months. I had not had a visual field cut since last September, but I've had about one per month since April. Fatigue and blurred vision have become so problematic that I have given up teaching for the fall semester. I am able to walk, but my gait is clumsy, and I can only move slowly. My muscles often become so tight during walking or standing that I must sit down for a while to rest them. The muscle tightness in my legs and arms develops with exercise. The muscle tightness around my head and around my upper chest and around my hips/lower abdomen is constant. The tightness around my upper chest is very painful at times.

I am also having some cognitive issues--word finding, attention deficit, etc.

My ophthalmologist has been unable to detect any abnormalities inside my eyeball. I will see a neuroophthalmologist on Sep 28.

I have seen a general neurologist a couple of times this summer. He ordered MRIs of my brain and spinal cord. Those were normal.

I've also had a VEP study and a nerve conduction study/EMG. I have had an many, many blood tests. All of my tests have produced normal results.

I am very frustrated. I don't know how I could have so many symptoms and yet no diagnostic indicators.

One test I've not yet had is a spinal tap. I don't know if my neuro will order that test given that my other tests have been normal.

I'm wondering if any of you forum members have experienced anything similar to what I've just related.

Thanks for reading this.

Susie

:roll:
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Postby lyndacarol » Sun Aug 30, 2009 6:03 pm

Hi Susie -- welcome to This Is MS; we are glad you found us!

Like you, my initial tests (MRIs, VEP, EMG) were "normal." I have never been asked to have a lumbar puncture (spinal tap), but on the basis of several lesions found in my fourth MRI a new neurologist diagnosed me with MS.

I encourage you to read all you can about this disease -- the Reading Nook forum here is a good place to start.

We come from many places; we share many ideas, we probably differ on many more; we have had many experiences; and we all HATE this disease. But we are a lovable bunch and we try to help each other by answering questions and posting information that we find. Welcome.
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Postby Susie54 » Mon Aug 31, 2009 2:31 pm

Thanks for responding.

I'm curious--how much time had passed between your first MRI and your fourth MRI??

Susie
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Postby bibliotekaren » Tue Sep 01, 2009 4:39 pm

Hi Susie,

Welcome - I'm newer around here too and am mostly trying to keep up with the vast amounts of reading that one can do here. If you jump into that you'll become much more educated about this all than the average MS patient.

It does seem that there are some of us who are very symptomatic for a long time before getting anywhere. It is frustrating as our lives are so very affected. I relate to most of your symptoms except for the visual cut. I'm in a vague atypical MS category but do have many lesions on the brain MRI just not in classic MS form apparently.

So, is the general Neuro that you're going to continuing to shake the tree looking at MS mimic conditions or what is his/her consensus? Is your GP involved or mostly just referring?

Labels aside, it sounds like your life is profoundly affected - I hear that. Good luck and hang in there.

Donna
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Postby lyndacarol » Tue Sep 01, 2009 6:15 pm

Susie--To your question:I'm curious--how much time had passed between your first MRI and your fourth MRI??

Over about a two year period.
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Postby radar22 » Wed Sep 02, 2009 8:38 am

bibloiotekaren wrote, " mostly trying to keep up with vast amounts of reading one can do here


I second that. With cognitive issues, so far its taken me 5x's to post this, let alone get some reading done!!! I did it!!!
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Postby Susie54 » Wed Sep 02, 2009 3:23 pm

lyndacarol wrote:Susie--To your question:I'm curious--how much time had passed between your first MRI and your fourth MRI??

Over about a two year period.


I feel better hearing this. Sometimes I find myself wondering if it's all my imagination--if I'm going a bit crazy. you know?

Thanks,

Susie
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Postby Susie54 » Wed Sep 02, 2009 3:28 pm

bibliotekaren wrote:Hi Susie,

Welcome - I'm newer around here too and am mostly trying to keep up with the vast amounts of reading that one can do here. If you jump into that you'll become much more educated about this all than the average MS patient.

It does seem that there are some of us who are very symptomatic for a long time before getting anywhere. It is frustrating as our lives are so very affected. I relate to most of your symptoms except for the visual cut. I'm in a vague atypical MS category but do have many lesions on the brain MRI just not in classic MS form apparently.

So, is the general Neuro that you're going to continuing to shake the tree looking at MS mimic conditions or what is his/her consensus? Is your GP involved or mostly just referring?

I'm not sure what my general neuro will do next. He's out of town for the next few weeks.

My GP is not much involved, mostly just referring.

I'm hopeful that the neuroophthalmologist will be able to help me find some answers.

We'll see.

Thanks for the correspondence.

Susie

Labels aside, it sounds like your life is profoundly affected - I hear that. Good luck and hang in there.

Donna
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Location: Albuquerque


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