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Old 12-18-2015, 03:20 PM #1 (permalink)
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Default Terrified of my Neuro appt next week

Hi there,

I am new to this so please be patient with me especially given the extent of my anxiety over this.

2 months ago I was out walking the mall, hanging out with my kids and friends and now I look like I am just wasting away.

It started with severe fatigue, I was unable to get out of bed and my body just felt low energy along with vision issues, I had and still have a lot of floaters. I am not one to mess with health so when I wasn't feeling better started seeing my physician who told me she had no idea what was wrong. We did a battery of testing and every other test my white count was elevated and then the next normal. Tested for Lupus and Rheumatoid and all negative. My body still just always feeling weighed down and my legs had no energy.

She tested for Lyme and only one band came back and it's not specific to Lyme and she went ahead and diagnosed me with Lyme, so I began antibiotic, however there is no improvement. Since then over a month I have face crawling, twitches all over my body, you name it and they are there.. Tight throat and also tight chest so I was given an inhaler.

I came off the antibiotics to test the theory of Herxing and nothing has changed. As of 3 days ago I noticed my left arm is very heavy and my shoulder is showing signs of muscle waste, I can see the bone of my shoulder protruding which was not there before and in addition all my skin is loose, my chin skin just sways when I tap it, and well to be honest any place I touch seems to be just more fat at this point with no more muscle build up. The twitching is awful, I even get it in my head and I've also noticed my pupils are not dialating at the same rate which is scary when you look in the mirror and you have one larger than the other.

I hate to bother people and like I said I have been proactive, when I read the symptoms and it was listed specifically to this disease I made an appointment for a Neurologist and the soonest appointment I could get is in a week. I did have some blood work done and Though CK is not specific to a diagnoses the last test for it was within normal range a month ago, but this was before the twitching had progressively gotten worse.

I'm not here to upset anyone, I know how serious this is and I have done a lot of research on the subject since I started with the more severe symptoms, but any help would be appreciated.

Thank you,
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Old 12-18-2015, 03:26 PM #2 (permalink)
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Default Re: Terrified of my Neuro appt next week

I am sorry I missed adding the what I thought was bone pain, which affected when It started both legs and my joints. In addition I keep having what feels like a charly horse on the bottom of mt feet.
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Old 12-18-2015, 03:51 PM #3 (permalink)
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Default Re: Terrified of my Neuro appt next week

What makes you think you have Lyme? None of what you said has anything to do with Lyme.
Please read the sticky post stuck to the top of this sub-forum that is titled "New Members Read This First Before Posting"
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Old 12-18-2015, 03:58 PM #4 (permalink)
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Default Re: Terrified of my Neuro appt next week

Lyme doesn't suddenly slam you with fatigue.
Twitching is far too common to be diagnostic of anything.
Vision issues are not associated with Lyme.
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Old 12-18-2015, 05:25 PM #5 (permalink)
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Default Re: Terrified of my Neuro appt next week

Thank you for responding.

After over a month in and out of the Dr's office and no improvement on antibiotics I did begin searching for answers online What really worried me is that I was diagnosed with Fibro almost 2 yrs ago due to severe tightness on my neck, back and shoulders and now with the last couple of months it seems like my health has declined so I began to suspect maybe the diagnosis was wrong. I have never twitched for over a month straight, a week ago my shoulder was not protruding nor my arm so heavy and the pain I thought was bone I wonder if I mistook it for muscle pain.

I really appreciate the feedback, again I have made an appt with a neuro to try and figure out why I have this weighted feeling throughout my body, why my skin is sagging and I don't have the muscle tone I had a month ago.

I had read that generally Lyme does not attack all at once the whole body and I do have the twitching everywhere, but my left side is the one most affected and has the noticeable changes with the shoulder. So many changes have happened with my body the last 2 months that I'm just hoping for some answers soon.

Thank you again,
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Old 12-18-2015, 07:27 PM #6 (permalink)
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Default Re: Terrified of my Neuro appt next week

Hi
you've had responses from members who really know their stuff so I'll just agree with them - none of this are symptoms that would point to the onset of ALS.

Hopefully the neuro you see next week will start heading in the right direction if it is neurological. You are lucky that you don't have long to wait!
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Old 12-18-2015, 09:23 PM #7 (permalink)
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Default Re: Terrified of my Neuro appt next week

Thanks Affected,

I called around for an hour until I found the earliest appt so I can either exclude or begin dealing with whatever the diagnosis is. Everyone here is such an inspiration and I'm sure that it can get frustrating when so many questions are asked so it's been much appreciated/

It's tough when you look into things online, there is no time frame, or any major specifics, so when you see muscle atrophy, tongue falcifications, trouble swallowing, you have no idea if there is an order to this, or what atrophy begins like, so though I am not wasting away to notice a bulge in my shoulder and loose skin is alarming, and anything I saw on youtube wasn't overly specific.

I tried real hard to educate myself prior.

Thank you again,
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Old 03-22-2016, 09:53 PM #8 (permalink)
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Default Re: Terrified of my Neuro appt next week

Hi Kim! It's been a while since you last posted here, I was just wondering how things were going with you? I hope you are feeling better now and you can find the answer you are looking for. I know how hard it is to live with so much uncertainty, I am in a similar situation and yes I also dread seeing a new neuro (still looking for a decent one). Best of luck with everything, please keep us posted
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