Medulla oblongata small right lesion

[ConfirmedRachel]

Hi all,
I've had my first MS Nurse appt but don't see Neuro til 16th May, unlikely to get immediate access to DMDs for a few months due to delays in deliveries (!!!!).

Anyway, I've now worried myself silly reading about one of the two new and active lesions picked up. The right side medulla oblongata being a main concern.

All info on line says it's a serious place with definite symptoms and could result in possible sudden death!

I'm just so worried as I'm not likely to get access to meds any time soon.

Anyone got the same? Any views or comments?

I'm UK based btw.

Nx

[ConfirmedRachel]

Thanks Immi,
My MS Nurse is pretty gd so far - bar the initial "you've got an awful disease with no cure" statement I had on the phone when booking my appt with her!

Fine when we met, although there is "animosity" (her words) between them and the MS reception carers, who didn't bother to tell I'd arrived, 20 mins later she spotted me while walking past!

Unfortunately their phone isn't available - either broken or unstaffed, so unless she calls me I've found my messages aren't passed on.

Oh well, best train my patience levels then!

Nx

[immisceo]

Your MS nurse is a great person to speak with about your concerns. They're usually the frontline when it comes to communication with newly diagnosed people, so they're used to the weird 'hurry up and wait' period that happens in between diagnosis and treatment and the tremendous anxiety it can cause.

I was diagnosed in January 2011 and didn't begin treatment until March that year for various reasons including researching what treatment I wanted and completing the screening process for the drug trial I ultimately went with. I *definitely* remember the anxiety that accompanies, "okay, I know I've this disease going on in my body and it's currently going unchecked!"

But the reality is, most MS courses are relatively slow. A bit of a delay starting treatment isn't going to alter things really, though I know at your stage of the game, any wait seems long! By all means, get pushy if you feel you're legitimately being back-burnered for whatever reason, but also know you're not going to be adding to your problems by a bit of a delay.

Also, you now have a diagnosis of a complex disease. A GP is better than nothing, but they can be remarkably uninformed about the specifics of MS. Mine sent me home when I had my diagnosing episode. Luckily I called the MS nurse and was diagnosed that day. An MS nurse or your neuro is probably a better person to contact regarding your MS concerns.

But the more important message is: This is your health. This is their profession. The concept of "hassle" is no part of that equation.

[ConfirmedRachel]

Thanks yet again JJ,

I seem to have gone to an "all hands on deck, start the steroids" to tumble weed which is just confusing and nerve wracking.

I am having palpitations the last few weeks on a daily basis when sat or still,  also get dizzy just going up the stairs. Just feel I have no one to talk to about it. Feel I have hassled my GP on all sorts of stuff recently so feel reluctant to speak to him.

MS Nurse said she thought I had a mild urine infection (nitrates and leukocytes) and is calling with result Tues or Wed, so may speak to her about it perhaps.

I don't like not having info and knowledge about what is happening, but I guess I better get used to that!!

Thanks again for replying.

Nx

[supermum_ms]

Hey there,

The mid brain, pons and medulla oblongata make up the brain stem.  The medulla oblongata is closest to the spinal cord, it contains the autonomic reflex centre for sneezing, coughing, swallowing, heart rate, breathing etc etc also around 80% of the motor information from the right side of the brain goes through the medulla oblongata, it's also suppose to be where emotional responses eg fear,  excitement etc are automatically generated....

Technically they don't actually know what causes sudden unexplained death in people with MS (SUDMUS), there is very limited data because it's 'extremely rare' to actually die from MS, sudden or otherwise! I am of the understanding that there is only one known case on record, where they discovered the patient did have an enhancing lesion in the medulla oblongata region when he/she died due to sudden onset of cardiac arrhythmias.  

Weirdly when ever there are these types a hypothesis being made, it's the rare issues that get researchers buzzing but for lay people they often just freak people out because there usually isn't a clear understanding of what the theory actually means for them personally. Sometimes it's really easy to scare ourselves silly and loose perspective whilst reading about associated issues connected to specific brain locations...breath!

Hugs........JJ