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smac0719

Neurologist visit

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As a result of a recent post and related comments I made an appointment and saw my neurologist on Thursday. We discussed the follow:

 

1) short term memory and other cognitive issues (losing thought while in

conversation, can't remember details, words not coming out right, etc.)

2) frequent headaches and I often wake up out of sleep due to severe headache

3) I had a hard to describe feeling in the back of my like a spasm or twitching

 

After talking with my neuro and catching up (hadn't seen her since 2005) she decided to order a brain MRI. Her thoughts are if the MRI is negative then the cognitive issues just may be the result of brain overload due to a combination of stress factors that having a chronic disease can cause: coping and dealing with the disease itself, medicines, work life, home life, maintaining a family, etc.

 

We discussed the thought that sclero may cause some neurological conditions. Unfortunately I am her only patient with sclero, but she is aware of the disease. Her sister was diagnosed with sclero, but only seems to have mild skin involvement. The good thing is that she is interesting in the disease and learning more. I told her there was some information on the site regarding sclero and neurological issues. I printed some of the information out to take with me, but of course I forgot! I am faxing it to her tonight and am scheduled for the MRI on Saturday.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hello

 

I hope all goes well with the MRI and I'd be interested to know about the headaches as I am having bad ones every few days and have for 4 months.

 

Keep us posted.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Good luck with the MRI.....sounds like you have a doctor that will seek and listen to you, that's great.....both for you and her sister.


Sending good wishes your way!

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Thanks Snow, Ohboy and Cheryle.

 

I really do like my neurologist. She sat down while we were talking and it really felt like we were having a friendly discussion.

 

The only good thing about the MRI is I get to take a happy pill for the test. :lol: I so can't handle the space limitations of those machines or the Hanibal Lector mask you have to wear to keep your head still while inside. I actually inched out of an MRI once because they told me it would only take a few minutes and they wouldn't stop it once I started to panic.


I may have Scleroderma, but Scleroderma doesn't have me!

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<<I so can't handle the space limitations of those machines or the Hanibal Lector mask you have to wear to keep your head still while inside.>>

 

This brought back some scary memories!!! I never considered myself claustrophobic until I had to have a MRI and had to wear one of those, plus being boarded in from the shoulders down. Talk about freaking out!!! The tech had to come and sit at my head and talk to me the whole time!!! I will keep you in my thoughts. Gareth has no problems with them at all......he's got the Down's Syndrome and Autism.....go figure!!!

 

Take care, Everyone.

Margaret

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I'm have claustraphobic tendencies when I'm a small or closed space and I can't feel air circulating around me, particularly my face. I will panic on a plane if the air vent on the ceiling is not blowing directly on me. I was on a plane once and it sat on the strip for over an hour with warm air circulating. When the stewardess noticed how uncomfortable and panicky I was getting she gave me a bottle of "spirits" to calm my nerves. I would love to travel more and travel abroad, but don't think I could handle the flights. I flew to Hawaii a few years ago and thought I'd just die! (although the trip was absolutely awesome and well worth the 20 hours of flying).


I may have Scleroderma, but Scleroderma doesn't have me!

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Oh Barefut!

 

You just don't know how bad I needed that laugh today. I have been nauseous all day and it has iritated me. It's not as bad now and I was able to work from home, but it was very hard. I was nauseous yesterday too, but I thought it was caused by taking some of my meds on an empty stomach. I tried to get lab work done yesterday, but went without an appointment. What a mistake. Everyone went to get their blood work done yesterday and there was over an hour delay for those without an appointment so I left. Once I got to work and ate a little something I was fine by noon. Well today, I went back to the lab with an appointment and did not take my meds. I got sick trying to drink a bottle of water and it was downhill from there. :(

 

Getting back to the point of this post, I will let you know what "our" neuro says. I will also let her know she is treating 2 for the cost of one! :lol:


I may have Scleroderma, but Scleroderma doesn't have me!

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Hello Smac

 

I think what you actually need is a nice cianti and some fava beans.

 

I'd need more than happy pills for a MRI, I crawled out of a CT scan of the abdomen because the big donut thing was gonna be over my face. Ended up with a scan showing half a liver and I pointed that was better than none. In the end I laid on my front so I could see out into the room and not the big donut thing.

 

Its nice to know others have issues with this sort of thing.

 

Hope it goes well for you as do the results.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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