SPECT scan results : it looks bad :-(

[Dechi]

@humanrising Dr Bryon Hyde, from Canada. Www.nightingale.ca

 

[humanrising]

yes, i think the same thing but as it is for most of us walking this i have been led or dragged down so many other roads with most being a huge waist of money and sanity.
one has to get in front of a doctor who not only can see the likelihood of it but know how to order tests and understand the findings afterwards
. my experience with specialist is they are very "special" at making money . you have to navigate being tested for things you don't really need, dodge, the push for expensive vitamins only they sell we know the rest of the yada yada and with my GP the best i get is a concerned" hmmmmm maybe", not much more then that and no way are they going to order a test. Hence hoping that someone might be able to let me know if there is someone i can connect with near me, California.

 

[Dechi]

@humanrising dr Chia is in California. That's where my gastric biopsy is being sent for analysis for enterovirus. He would be my choice if I lived there for sure !

 

[humanrising]

thank you for your suggestion, do you think Dr Chia would they be willing to do head/brain scans? wish you luck with your results.
thanks again

 

[Dechi]

@humanrising I don't know, but it's worth asking. I know he and Dr Hyde work together so there is a good chance. Dr Hyde sends the spect scan to Chili for analysis by Dr Sonia Neubauer, in nuclear medicine. She sends a report detailing the affected areas of the brain, severity and a differential diagnosis. Also many color images of your brain showing the anomalies and severity.

Read this if you're interested. The spect scan has to be done on a specific type of equipment, forgot which one but it's old technology and HMPAO protocole.

Page 6 for testing (Dr Chia is listed as participating to the writing of this booklet) : https://lookaside.fbsbx.com/file/Definition of ME - Dr Hyde 2016.pdf?token=AWwbuGPWL7p_0ENMbrk9EMlHAFlZWD9NXLRwVoEWMKXVlABr_jw06vJxcbuGgR7fLeOlOgAANZfBzxML7GSbogfzOWJ9Dd6OJmnhPGyUgr07joS-FDn4acxo31pO6yyTCpaLHnDX0HD_bmQ0PlBWSymGWpqRB3xKZDlDNlp7GMVK9g

 

[humanrising]

your the best! i will get it printed up so i can read it.
I was first made aware of this from reading Dr Goldsteins books.
i was also interested via " the liberation technique" for people living with MS. My old GP was open to the idea of getting my arteries tested but the challenge again..... whilst the ultrasound is commonly used, this is done a bit different and you need the right interpretation. I didn't want to take him up on and be told nothing was wrong because they didn't do the test right or read it correctly .
If the test was positive, I wouldn't get a stent put in my neck but i think its worth knowing what exactly is going on in case there might be another way like " the perrin technique"

but its the spect i really want done .... who doesn't want to know what is going on with their brain!!!!!!

i will look into all of this and i do get in to see them i will post my experience.

 

[Dechi]

@humanrising Yes, please let us know what happens ! You need someone to interpret the report done by Dr Nuebauer, I forgot to mention that. Dr Hyde did it for me, I suppose Dr Chia would write your report in your case. That's why you can't just go to any GP or non-ME specialist.

 

[Jesse2233]

Hey @Dechi, if you're willing to share, do you know which regions of your brain Dr Hyde found abnormalities?

 

[Dechi]

@Jesse2233 Sure, there is hypoperfusion on both temporal lobes, both parietal lobes more severe at the convexity of the anterior parietal lobes, both occipital lobes, the posterior cingulate gyrus more marked to the left and the cerebellum more marked to the left.

The left side being more affected explains why I feel certain symptoms more on one side of my body.

 

[humanrising]

well, hyde doesn't seem like that is possible, 18 months of them deciding if he is going to take you, only 10 to 20 new patients a year and dr chia is virologist which i didn't pick up on and i am not interested in that track
just got back today from yet another specialist and while they were very nice and compassionate it was totally pointless. doctors only do a " thing" these days and god for bid you ask about anything that is not on the menu. so depressed and disappointed. sick of knowing more then my doctors. feels so dam hopeless. .

 

[Dechi]

@humanrising I only waited 5-6 weeks to have an appointment with Dr Hyde. If you're willing to skype, it can be fast.

 

[humanrising]

The Luddite might be willing to find a 12 year old to help her skype but if i read it right you still have to have a doctor who will order the tests and i don't have that. i have medicare and medical low income clinic doctor. Bless her heart she is kind but has no idea what i am dealing with or how to go about the simplest things.... and with the limitations of insurance and it being a low income clinic she can't order anything out of her extremely limited world. if i get an STD or hepatitis I am good to go!

I am afraid its the same basic old hell trying to find someone who is educated, who listens and is open to investigate. What i seem to get over and over is doctors who are flummoxed, condescending or want to treat in their tiny narrow interest. I think what i want doesn't exist anymore. The pain doctor I went to had a long list of injections she does some were out of the box so I had some hope she was more forward thinking.

One that was on the list was Ketamine. I am interested in it but would prefer to try it nasal route first since its has less issues before I went the IV route. I am interested in IV Saline, or Lidocaine and of course looking at the possible brain, brain stem, artery issues. She doesn' t actually do the ketamine she refers out, and she didn't do one other bloodly thing but the injections to treat pain.... at her "center". Tons of money in stem cells and plasma. couldn't discuss or refer for the brain tests. She did ask me if i take Tumeric? I am totally disabled with sever pain, on serious pain medications don't sleep blah blah but if i took tumeric all would be well. AGHAHGHAGHAHAHGHAAHGHAHG .

I don't present well for help. good for not looking like i am a drug seeking addict but not " bad enough" for doctors to really get how shit my life is. I work hard at bathing, holding my body as if I am not being drawn and quart ed, try to stay out of the crying victim role as much as I can .... have to for my sanity .. I don't think i have all the answers but i truly believe i am asking the right questions, just no one to present them to and speaking to one worthless doctor after the other is going to put me in the nut house. wish some of the folks here had medical degrees ........ God knows, we would be better off if some of the wise smarties here did! Please get well and get your MD for all our sake's.

 

[Dechi]

@humanrising Dr Hyde would ne skyping directly with you. And he would order the tests for you or give you a reference paper to go to some hospital or clinic near you. Just in case it makes a difference for you.

 

[chickpea]

@Dechi just read your post....my SPECT was from Dr Hyde to and had similar problems. I was actually relieved to have results that proved 'it wasn't all in my head' but was in my brain. Explained a lot of things for me..

 

[Dechi]

@chickpea Yes, now I am relieved too ! Now I know it's in my brain, not in my head, lol !