Old 10-10-2017, 06:04 PM #1 (permalink)
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Angry So scared and driving myself insane

First of all I can't believe I'm doing this. I am so sorry if this is disrespectful. I just feel so alone and scared.

The past few weeks have been a nightmare. First I felt terrible, I will admit I am under huge amount of stress. But it all cummulatrd one night when I had a extremely painful headache and then my tongue twitched like crazy I could feel it and see it at rest in my mouth just on the tip though and maybe once in the middle.

Which yes I read was not a problem really on its own. Since then I have driven myself mad looking up everything under the sun convincing myself I have this which is insane in itself why would anyone wish to convince themselves?

In the mean time I also experienced burning mouth and woke up choking and once biting my tongue unable to sleep afterwards due to extreme phobia.

I have been to the hospital which I'm sure looks insane on three different occasions hoping one would at least do an Mri unfortunately was not the case.

I constantly stick my tongue out to see it and have noticed that when saying aaaahhh my soft platelet doesn't move. Also my uvula curves to the left but it's always done that. Plus I also always sound nasely. However now I can't sing properly which I'm wondering is because I have actually damaged my throat by repetitive testing. I still have complete movement in my tongue but I think I have been biting it throughout the day.

It's obsessive I know i actually called my doctor hoping to get him to give me anxiety meds but to no avail until I see him Thursday.

I have scheduled a neuro appointment for November 1st but that in its self is terrifying. I'm so sorry that anyone ever goes through this. I need a hug a bottle of tequila and a pep talk.

They did prescribe me neurontin but after seeing its nasty after effects I'm trying not to take it however when I don't take it I get a headache and some twitching in tongue and other places. I still can't sleep I wake myself everytime. I'm only getting 2-3 hours of sleep a. Night and last night my leg jerk ed so bad it woke me up.

I just. Needed someone to talk to and if anyone has some reassurance that would be nice to but understanding if there is none. The fact that I'm even asking from people who do definitely have it is terrible in itself.

Thank you for your time
The extremely disturbed and mad at herself for going crazy ginger.
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Old 10-10-2017, 08:05 PM #2 (permalink)
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Default Re: So scared and driving myself insane

Likely if this is all about stress, Neurontin will do more harm than good. Please don't mix it with tequila

Reassurance: nothing sounds like ALS or anywhere close. Consider a hot tub, massage and a no-alcohol but nutritious and hydrating meal, followed by an early night with an Ambien. And a multivitamin, since the symptoms you describe can relate to lack of iron and/or electrolytes.

When you see the doc, ask to be screened for Restless Leg Syndrome, which can affect other parts of the body as well, and certainly does sleep no good.

Don't be mad at yourself. Everyone here has chased wild hares. The important thing is to make a move toward better days and nights.

Best,
Laurie
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Old 10-10-2017, 08:36 PM #3 (permalink)
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Default Re: So scared and driving myself insane

Thank you for responding. I'm almost positive my soft palet doesn't rise when I say aaaahhh sorry to bother but could you tell me if that could be als. I honestly really thank you for being here for me Through my crazy fit. If anyone else wishes to talk about something I'm willing to listen

Last edited by Gingy : 10-10-2017 at 09:14 PM
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Old 10-11-2017, 12:09 AM #4 (permalink)
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Default Re: So scared and driving myself insane

Gingy, there's no ALS in your posts. Don't know why you came here in the first place.

As for sleeplessness and legs waking you up: That's somewhat common. Your doctor will help.

I've had Restless Legs Syndrome for 30+ years. Fortunately, it's totally treatable these days.

Laurie's post above has the most perfect advice. Now it's your turn to turn that into action. Good night.
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Old 10-24-2017, 07:08 PM #5 (permalink)
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Default Re: So scared and driving myself insane

I'm sorry to bother but I've started coughing I know I'm being stupid but it seems like it's after i eat and I'm truly scared. Do you think it's possible it's just because I have obsessively checked my throat and tongue.

I have a weak shoulder as well but I'm scheduled for a Mri on Friday and I hopefully get to see a neuro Thursday. I have been going to the doctor and started klonopin which seems to have calmed down my tongue twitching unless I have caffeine in which case it goes crazy.

I'm sorry to bother and I thank you for any response I'm just very nervous
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Old 10-24-2017, 07:26 PM #6 (permalink)
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Default Re: So scared and driving myself insane

I would advise you to stay off this forum in the meantime, as it seems to add to your anxiety about your symptoms. You've made an astute observation with regards to caffeine and twitching. There is nothing the people here can do to reassure you, given they've tried and it hasn't worked.

Please let us know what your doctor/neurologist says after your next exam, but no more posting about your symptoms till then. While this is a support group for those who have already been diagnosed or who are caregivers for people with MND, it is not a place to continually come for reassurance for anxiety. Two very experienced members have answered you already and there's not much more people can do for you here until you receive further information from your doctors.

I wish you well. Please let us know how your appointment with your doctor goes. I advise you to stay away till then.
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Old 10-24-2017, 07:38 PM #7 (permalink)
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Default Re: So scared and driving myself insane

I'm sorry I didn't mean to offend. I was just worried. Thank you for your response.
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