Odd Question

[StacyHayward]

Can nerve pathways damaged by MS send false signals back to the brain? I know damaged pathways struggle receiving signals, but can they send lies?

For years when it’s cold my throats constricts and I have trouble breathing until warm again.

That happened again yesterday. But by night my throat got super tight, I was wheezing badly and I struggled breathing.

I went to the ER about four this morning because I coukdnt breathe. Chest X-ray was great. CT scan of neck was great. No COVID, influenza or RSV. Two nebulizer sand a steroid shot helped but didn’t fix the problem. And my oxygen was low. The doctor said I have a nasty virus, but couldn’t identify it.

He said while my throat felt constricted, there was no inflammation or constricting happening.

So could my brain be misinterpreting the signals my nerves sent?? Just curious. The ER doctor didn’t think so.

They sent me home with oxygen and I’m doing much better.

And I know you’re not doctors. I’m just looking for experiences and opinions. I see my doctor Tuesday.

[NorasMom]

Opinion: Yes, I believe they do. It's not much different than the phantom pain felt by amputees.

[StacyHayward in reply to NorasMom]

I like your example!

[NorasMom in reply to StacyHayward]

My feeling has always been that the human brain is absolutely amazing, and we know so little about it. How many comatose people come around and explain that they heard or saw everything clearly while they were incapacitated? Or the times when the brain can heal small amounts of damage to itself or just "rewires" certain areas after injury. What if deja vu is just our natural instinct kicking in with an advance notice? I don't think I've ever had trigeminal neuralgia, but I do get toothaches sometimes where I haven't had teeth for 20+ years.

I see MS as a frayed electrical cord. Sometimes it works the way it's supposed to, sometimes it shorts out, and sometimes it sends a jolt through your body. If it can do all of that, then why wouldn't it feed wrong information to our brain? How many times do we look at a fork and call it a spoon? Or we can't remember how to use the stove? If your body is shorting out somewhere, then all kinds of screwups are possible.

[Morllyn in reply to NorasMom]

That is kinda how I feel too.

[GrmaK]

Hi Stacy!

I deal with exactly what you are describing and have for many years. I have not been diagnosed at this point with MS. I was in an accident where I broke my neck at C1-2 about 20 years ago. I have asked my doctors to try and help me find out if I have MS or another autoimmune disorder as my symptoms have changed drastically in the last 3 to 5 years.

I am on 24 hour oxygen with no diagnosis at all right now. They can’t find anything wrong with my lungs, or my heart. My O2 sats will not stay above 88 by itself, hence the oxygen help. I get terrible chest pains, with awful tightness at my sternum and what feels like constriction of something. My airway feels tight, I can’t swallow properly. This is in addition to almost every other MS symptom I can find.

My doctors are finally taking me seriously and I am headed to a rheumatologist, a neurologist and orthopedist very soon(Knees). They are also checking my para-thyroid more closely now as a possible problem.

I hope and pray we can both figure out the best treatment and maybe the secret of what I assume is the MS-hug. If I can help in any way, please don’t hesitate 😄

Kimberly

[irhunter in reply to GrmaK]

I went two decades being told I have disk degenerative disease…. Just diagnosed with secondary progressive ms. My specialists believes it could have been stopped with a proper treatment before now. Demand answers from your doctors!

[StacyHayward in reply to GrmaK]

good luck with your appointments. Hope you get answers!

[Sandydemop]

Dear Stacey, there are lots of unusual, unpredictable and not understandable symptoms. what about Epstein Barr? i've read that we have all had some variation of it. (99% if people with MS have had EB) Did you ever have mono? that is related to Epstein Barr.

[StacyHayward in reply to Sandydemop]

never had mono.

[Sandydemop]

can you get tested for Epstein Barr?

[kycmary]

Well I am thinking that when nerve pathways are damaged the signals sent are damaged also so that is entirely possible in my book.

[Fancy59 CommunityAmbassador]

Stacey understand that until you live with MS you really don't understand MS and all of it's ramifications. Just to share personal experiences with you I often will have flashing stabbing pains on my leg or in my arm and nothing is apparently wrong with it when I check the spot out. Or when I'm trying to walk and my left leg simply won't lift up and take a step forward because it's my weak side no matter how hard I try it doesn't move. Then when I sit down the entire leg will go into a muscle spasm and shake uncontrollably. To me that is a reverse signal being sent from the brain because it wouldn't move at all 10 minutes before but now it's shaking like you wouldn't believe. Fancy59.

[StacyHayward in reply to Fancy59]

well, I’ve had MS for almost 23 years, but it still surprises me! I’m always trying to learn!

[erash]

I once had a patient (no MS) who we were certain had asthma but didn’t respond to usual asthma treatments and had normal work-up. She had spasms in her throat (tracheo-laryngo spasms). Consider seeing a specialist (pulmonologist or ENT). By the way her symptoms were incited by chemical smells.

Personally, I have bouts of shortness of breath related to MS weakness in my intercostal muscles. Had in depth work up by pulmonologist and cardio. Work up was normal. Treatment breathing exercises with The Breather

[ahrogers]

Your brain can definitely interpret signals incorrectly. I used to get the sensation that a string was tied tightly around my toe when nothing was there. I was happy when my feet got numb enough to not feel that anymore! You might need an updated MRI to see if you have a new lesion causing this sensation.

[mrsmike9]

How scary! I hope you get answers soon.

[Goldilockssearching]

I think so. I equate it to shot circuiting 😂

[Tazmanian]

I have no opinion but good luck

[BlanketTime1]

unfortunately, emergency doctors are generally no help for us. i've only gone if i had a head injury from a fall and experienced weird symptoms so i could get a ct scan to make sure i was physiologically okay. they always come in smiling and grow progressively more panicked once they get a look at me. why? they have no clue how to help me and their ignorance makes them panic.

paraesthesias are weird sensations caused by various things, including nerve damage. we feel things like water running down our thighs when they're completely dry. it can also cause peripheral neuropathy which is quite painful. it figures it could also affect your ability to breathe.

it sounds absolutely terrifying. i would call your neuro and get in asap.🤗