Has you or your loved one been misdiagnosed or undiagnosed and you are searching for answers?
Has PSP, MSA or CBD been mentioned?
It might be helpful to mention PSP/MSA/CBD, as most doctors aren’t familiar with it until you bring it up. Here is a great resource from PSPA that may help if the doctors are unfamiliar.
These are guidelines and because no two persons follow the same timeline or experience all the symptoms, it can be tricky to diagnose until the later stages when “hallmark” symptoms of the diseases present.
My mom was diagnosed PSP and confirmed by autopsy PSP...she had tremors even though the sheet says no presenting tremors, But almost every other single thing listed, but some not till later in the disease (speech and swallowing issues only presented less than 6 months before my mom passed)
Vertigo was the FIRST diagnosis along with many other possibilities, then it was Wilson’s disease...it was not any of them.
Vertigo was a symptom my mom was experiencing from the PSP and as for Wilson’s disease...My mom had the last two symptoms listed below but none of the first four, then once the eyes (a hallmark symptom of PSP) became a big issue, PSP was finally mentioned.
Here are the Signs and Symptoms of Wilson's disease?
1.Fatigue, lack of appetite or abdominal pain.
2.A yellowing of the skin and the whites of the eye (jaundice)
3.Golden-brown eye discoloration (Kayser-Fleischer rings)
4.Fluid buildup in the legs or abdomen.
5.Problems with speech, swallowing or physical coordination.
6.Uncontrolled movements or muscle stiffness.
Never settle for a diagnosis if you feel something's not right. Speak up and share the resources about these diseases with the doctors, most are unaware of them.
Bless you all on this journey 🙏❤️
May you all find answers and peace.
Thanks to PSPA for a great outline of the diseases!
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1 comment
One of the reasons it takes so long to diagnose PSP is bc most symptoms do not show themselves until they are over half way thru this disease . The vertigo is usually the first symptom . My mom passed over 6 yrs ago from this and now my sister has it . So remind family members that it “usually” isn’t hereditary but it is in some families. That is what they are telling me. In the Greek islands or that island with the big turtles , Galapagos I think they said they found more families where this disease was hereditary. I wonder if it is caused by certain fruits . So I’ve told my family if any of them ever get vertigo to insist on an MRI BC THAT WILL SHOW THIS DISEASE . My sister knew the symptoms so well bc we had just went thru them with our mother but man we spent several years telling my sisters drs to plz just order her a MRI. They just thought we was paranoid so finally my sis went to her therapist and she ordered an mri just to clear my sisters mind I think but guess what, my sister was right and was diagnosed . So imagine how scared I am ! If I ever get off balanced or can’t remember something I freak out . My sister is only 57. Mom was 70 when she died .