Curious: I see my PCP next week; wonder if... - My MSAA Community

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goatgal profile image
31 Replies

I see my PCP next week; wonder if I should mention this to her. Months ago, I tried getting info from my neuro; her response was "huh, never heard of this." Here's what happens: I am sound asleep, when in my head there is a loud noise like an explosion. I am not aware of a dream causing the noise; the sound is sharply explosive. It wakes me up, and then my whole body jerks so violently that it has made the dog fall off the foot of the bed (where she sometimes sleeps). This began a few years ago, but has recently become more frequent. I'm assuming it is somehow MS related, but just in case it's not, should I tell my doctor? I don't want another "huh" response, but I would like to know what is going on.

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goatgal profile image
goatgal
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31 Replies
Kenu profile image
Kenu

I think tell your doctor. I use to have episodes were my hole body would tingle and I would shake like I was freezing 🥶. Haven’t had this for quite a few years, but told doctor about it twenty five years ago and she stated it could easily be related to MS. So I say tell them and see what they say 🤷‍♀️ I think my became controlled by DMT’s. 😉 Ken 🐾 🐾

in reply to Kenu

I have that a lot—-I have demanded more tests for MS in small town Montana..,

Apparently can’t do till the end of October!

I just want an answer

carolek572 profile image
carolek572CommunityAmbassador

I would mention it to your neuro, goatgal You never know what the response will be unless you let them know. Tell them as much as you can about this ~ what were you doing when this happened (sleeping), when did this last happen, what activities did you do prior to this happening, etc. Document it, and note everything. You never know what might be germane to assist this from being resolved. Let us knw what develops and in the meantime, Keep Smiling :-D

goatgal profile image
goatgal in reply to carolek572

I was worried until I read the article posted here by Allen5280. I trust those here on the forum more than my current doctors. I may be curious, but they are not. Their responses always make me feel denigrated and devalued.

carolek572 profile image
carolek572CommunityAmbassador in reply to goatgal

Is there any chance that you can find a doctor that is more empathetic? Someone like Dr. Allen? That has a lovely ring to it, don’t you think? Keep Smiling, my friend :-D

in reply to goatgal

goatgal—

This is why I rely on you all for advice...

Not confirmed, but not listened too...

I have known my body for many years!

Allen5280 profile image
Allen5280

Ive had the same experiences and always just assumed it was a dream. Now that i think back on them, mine are the same. I sometimes wonder if it was a gunshot or a tree falling on ny trailer. I am always "jerked" from my sleep. Now im going ro have to add that to my list of questions as well!

Allen5280 profile image
Allen5280

This started the wheels in my head going and i did some searching

en.m.wikipedia.org/wiki/Exp...

goatgal profile image
goatgal in reply to Allen5280

Thank you so much!!! I am reassured, Dr. Allen, just send me your fee statement! I've been seeing the light flashes mentioned in the article since my first optic neuritis attack more than 40 years ago but stopped asking about them after several different doctors told me I must be imagining them. Now, I know it's literally all in my head..

Allen5280 profile image
Allen5280 in reply to goatgal

I feel blessed to be able to be of some assistance. It also answered that for me as well, no billing necessary! 😁

goatgal profile image
goatgal in reply to Allen5280

When the reference librarian post opens, I hope you apply! I didn't even know what to search for.

jimeka profile image
jimeka in reply to goatgal

You learn something new every day. It’s good that Allen5280 has been able to help you. Hope your eye has improved. Blessings Jimeka 🤗

Allen5280 profile image
Allen5280 in reply to goatgal

I would still mentuon it to your dr. I will be yalking to my pcp avout it just to have it added to the long lust already there. Finally, after ALL this time... this emoji actually 🤯 fits me 😂 couldn't figure out if i should laugh or cry about that, so why not BOTH.....

Kenu profile image
Kenu in reply to Allen5280

Good read👍😉 Ken 🐾 🐾

in reply to Allen5280

Always blocks me for links...

erash profile image
erash

Tell your Neuro!

goatgal profile image
goatgal in reply to erash

I did. She said, "Huh. I never heard of that." Made me feel silenced, dismissed. I do not intend to see her again.

erash profile image
erash in reply to goatgal

Oops sorry, I missed that. Yes, I agree with Allen. Your symptoms should not be dismissed.

leking1 profile image
leking1

We've all learned something new this morning! Great job, Allen, and I hope you have a blessed day, goatgal!

pamgarner profile image
pamgarner

ghheezz! again with the dr's!if it is not in a book ,in their mind it doesn't exist.with ms,we all know anything and I mean anything can happen,find a new dr.It is insulting to be dismissed,makes me sooo mad :(

in reply to pamgarner

Agreed

goatgal profile image
goatgal

Allen5280, Kenu, erash, carole572, jimeka, leking, pamgarner and everyone else. Thank you all for the information, for the support, for the ability to listen and respond. In a nutshell, this is the value of this forum family. Without you each and every one, the road we travel would be so much more difficult and lonely. You are the best!!!

in reply to goatgal

Yup, yup goatgal...

We need you too!

JTZES profile image
JTZES

It doesn't matter if it is MS based or not. Yes you should tell your PCP.

You doctors should be working as a team. Any other doctors should be told as well.

Do any of your doctors use My Chart? This is a software program by Epic. The nice thing about it is that your doctors can see all the information from all the doctors notes if the health care networks are using that program.

goatgal profile image
goatgal in reply to JTZES

The UVA system uses My Chart. That is how I can reach my doctors. The difficulty I seem to have is this: if doctors aren't curious about what I tell them, they don't put it in their notes, so it doesn't get entered into the record. For instance, there is no mention in any of my records that my right ankle has been swollen with edema since it was fractured two years ago. When I mention it, I am told to continue wearing compression hose. I no longer even bother mentioning the constant low level pain where the plate holds the fracture together. Evidently both of these are normal reactions to an injury of this sort in someone of my age, but it would be nice if one of them could explain rather than sending me to Dr. Google for information. I don't doubt that fine doctors exist. I just don't happen to have access to them. End of gripe!

BettysMom profile image
BettysMom

Fascinating! Shame on your neurologist for not knowing about this phenomenon and for just brushing you off when you explained your symptoms.

mrsmike9 profile image
mrsmike9

Yes!! Make some noise!!! If the dr doesn't know, get a referral to someone who might!

eharoot profile image
eharoot

yes, yes and yes

Hell yes!

I have “strange-dreams “ myself...

I am 53 and don’t know what they mean....??

Definitely going to ask...

Don’t have a appointment till the end of October, with the Neurologist!!’

Huge list of questions!

Definitely talk to them...

Doctor

in reply to

So wanna say more... getting tired

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