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Avatar universal

After 7 years- test reports next week, plus new symptoms??


Needing support/thoughts on a few things-

1. Next week I go for a final report on my cumulative tests at Mayo. I have a few neuro issues, so I am sure this will be an extensive visit. Freaking out slightly....it's been a long 7 years!

2.I went to the doc for bronchitis 2 weeks ago and was incidentally also dx'd w/ a heart murmur, possible prolapse, so now I have to go through echo testing an such. I ave had chest pain for years, but due to my age, docs dismissed it as migraine related... (even though I have a family history of heart issues). I am only 31. Although, the doc thinks it could also be electrical issue, which I read can be rarely related to MS...

3.I woke up the other day with exactly the let half of my face/scalp skin area vibrating in such a way that it felt numb. I still had muscle control and the sensation only lasted about 30 mins. I have had scalp tingling before- but this felt different and not really like pins and needles either, just a fast paced vibration/numbness on the surface.
I do have TN and ATN on that side, hemifacial spasms, and auditory nerve issues now, but It seems like several sensory nerves were affected to span such varied area. My neuro thinks that my hemifacial spasm is really a brain detection issue- not facial nerve issue...so maybe this is the cause? Dunno... I will surely mention it next week when I go back for answers.

4. I am overheating at night- not sweaty, except for back of neck. It's more like my insides and brain feel hot when I sleep, thus waking me up often. Is this familiar??

Thanks for listening. Do any of you have any experience with any of these symptoms? I had so many questions so I lumped them together. Hope that's ok.

Have a blessed day!
7 Responses
572651 tn?1531002957
Hi an d welcome. You have done a great job with those questions.

1. I hope you get answers but it often seems there is no final report.  7 years is quite the haul and I can understand why it would be daunting to face this now.

2. This makes me angry because young women almost always get a pat on the head an told to go away with their heart symptoms.  You are another example.. So glad someone found the problem. Murmurs can be benign but you need a thorough cardio work up to be sure.  

3. At least your Neuro is listening to you about the spasms. Perhaps at your appt next week they can tie this all together.

4. You don't want to her this but you are nt too young to be peri menopausal.  With all your health problems, it is quite possible you hit this point early.  Tell your doctors about this one and have the or one tests run first.

Good luck and I hope we will see you around.
Avatar universal
Hello, thank you!

1. Yes, quite exhausting- I am ready to move on regardless of answers I suppose, just hoping the testing is over for now.

2. I have an echo in a few weeks...meanwhile the doc overseeing the issue says that chest pain and related issues are no big deal. well, geeze,... at least I am getting testing.

3.We shall see!

4.I thought about that, but I have no other symptoms, and I only get this flushing during neuro flares, so I am thinking somehow it's related. I'll add it to my list of questions.

Have a good week .
3986919 tn?1352129583
I too have had the "hot" issues at night.....sometimes with no sweating....I am constantly pushing covers down....then up.....down...then up again...Hard to sleep!

Funny, but they also found a heart murmur with me too....turned out to be mild mitral valve regurgitation...after an echo was done.

Forgot to mention in the response to your other "brainstem" post...I get feelings of tingling/numbness and as if a hair was on my face....always on the right side.

3986919 tn?1352129583
...Oh and they did rule out menopausal "hot flashes" I am 53.
Avatar universal
Do you also get face pain with your tingling? If so, have you discussed trigeminal neuralgia with your doc? The seurface sensation is a bit batty, isn't it?
I am curious what echo will show... What do they do for yours?

I am the same way with covers! I have to keep air down to 62 just to sleep!
Avatar universal
I've had a prolapse for about 30 yrs, no biggie they say, they just watch it with an echo every now and then.  Have had the murmur for as long as I can remember.
3986919 tn?1352129583
To answer your questions:

Do you also get face pain with your tingling?......
No, but I have had severe tooth pain on the left side of my face. (no problem with my teeth) No I haven't discussed it with my doctor...I just recently 'connected' the teeth pain with my 'MS' symptoms. I will have HORRIBLE teeth pain (always on the left side) that will last up to a week and then go away! I have had bouts of this for about 4 years.

I am curious what echo will show... What do they do for yours?......
They  put me on Beta Blockers (Toporol) I also had an arrhythmia and fast heart rate...The last Echo I had showed improvement in the mitral regurgitation.

I have to keep air down to 62 just to sleep! .......
I thought I was bad! ;D I put the air down to 72 and have a fan blowing directly on me!!  :D


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