Probable, possible or safe MSA and how do I donate my brain!

Probable, possible or safe MSA and how do I donate my brain?

Yeah, what now? Do I have MSA or not?
Probably most people ask themselves that when they hold their doctor’s letter in their hands.
On the letter, under Diagnosis, the words: probable or possible MSA are often written.
Can / can not decide? Do I possibly have something else?
Even today, in some tiny corner of my shrinking brain, I still have the hope that there is something else that is treatable. And that with every MRI scan, which is due to these words: possible -probable !!!

This classification is from a time when there were no MRIs yet. Even today, diagnoses are still made according to the clinic (of course, in the meantime, the MRT is added). Probably one would have to revise the whole thing.
In the further course of time additional MRTs only make sense if a new question arises or for research purposes. But as a further follow-up they are rather superfluous. Here the clinic is still decisive. Because what do you want to do if the clinic is good but the MRI is not and vice versa if the MRI is unchanged but the clinic has deteriorated. Is an MRI going to fix you?

In textbooks and on online platforms you often find the information that the disease occurs in the 6th decade of life. More recent findings tend to be based on the 3rd – 7th decade of life off.
Diagnostically, the question of impotence in men and urinary incontinence in both men and women is a key factor. Both can occur years before the diagnosis is made. Other important questions are orthostatic hypotension (e.g. dizziness / fainting after getting up) and irregular tremor (trembling).

One thing in advance:
The secured diagnosis: MSA, is only possible after death, by means of an autopsy of the brain.

Probable MSA
Vegetative disorders, such as urinary incontinence in combination with erectile dysfunction in men .
Or orthostatic hypotension : blood pressure drop of 30mmHg systolic or 15mmHg diastolic after 3 min.
And a Parkinson’s syndrome with poor response to dopamine: bradykinesis with rigor, tremor and postural instability !
Or cerebellar syndrome (gang ataxia, ataxia of the extremities, oculomotor dysfunction)

Possible MSA
Parkinson syndrome or cerebellar syndrome
And at least one characteristic of a vegetative disorder.
Like erectile dysfunction in men.
Unexplained urge to urinate, increased frequency of micturition, incomplete voiding of the bladder.
And at least one of the following characteristics of a possible MSA -P or a possible MSA -C including positive Babinski

Stridor and a
Dysphagia (difficulty in swallowing) within 5 years.
In addition, orofacial dystonia (disturbance of the facial musculature)
Combattocormia and/or Pisasyndrome (extreme prevention/tilting to one side)
Disproportional Anterocolis (extreme forward bending of the head)
Pathological crying or laughing (inability to stop)
Newly occured snoring
Inspirational sigh
Twitching, myoclonic hold or action tremor
Cold hands and feet
Pronounced dysphonia (impairment of the voice)
Pronounced dysarthria. (impairment of speech)

Now the MRI has its entrance!
You can see an atrophy in the pons, putamen, pedunculi and cerebellum (different regions of the brain). As well as in the FDG PET a hypometabolism (insufficient metabolism), and in the SPECT an interruption of the dopamine channels.

This is the difference between possible and probable MSA on your doctor’s letter.

Some are thinking about donating their brain to research later.
The DZNE takes care of what costs the patients in the States, of which there are 10 locations in Germany. Their program is called Brain Bank
https://www.dzne.de/forschung/brain-bank The DZNE has 6 locations with these units.

If the patient is deceased, a number is dialled which is manned 24 hours a day.
The DZNE organises the transport, the prompt removal of organs and takes the deceased to the funeral director. An autopsy is also carried out to confirm the diagnosis. A name can be given (next of kin/attending doctor) who will receive the diagnosis after the autopsy (if desired).

Excuse my many technical terms, I wrote in nurse mode and could not be kept any longer

 

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