SPECT scan results : it looks bad :-(

[Dechi]

I just got the results from my SPECT scan. I haven't talked to Dr Hyde, but he forwarded me the results because he had some questions for me.

I am a bit in shock and panicking, I don't know what this all means. i will google it, but meanwhile, if any kind soul can help me, I would appreciate it.

**************

I have deleted the details, for privacy purposes. Basically, the report says I have hypoperfusion in many areas of the brain, and hyperperfusion in 2 areas. It is definitely looking like ME. According to the Nightingale definition, we need to do a gastro biopsy and if there is proof of enterovirus, ME is confirmed 100%.

 

[halcyon]

I am a bit in shock and panicking

I'm not sure I would panic any more than you did upon being diagnosed with ME in the first place. These are mostly common findings in ME patients. Keep in mind that SPECT doesn't necessarily show damaged brain tissue. It's showing areas of reduced blood flow (or increased, in your case, in your thalamus and lentiforme nuclei), presumably due to lower than normal metabolic activity of the underlying cells in the affected regions.

 

[halcyon]

Out of curiosity, do you have any issues with POTS or blood pressure issues?

 

[Dechi]

Out of curiosity, do you have any issues with POTS or blood pressure issues?

@halcyon I have low blood pressure, that is actually hogher when I take nimotop, and atypical orthostatic intolerance which will be tested at the end of january by a neurologist.

Do you think this report really confirms I have ME or is there still doubt ? Thanks !

 

[Kati]

Hi @Dechi, I concur with @halcyon there is no need to freak out, this is simply a report of what has been for the length of time you've been sick. You now have proof of paper that these symptoms you've had are not figment of your imagination.

Since Dr Hyde is such a great diagnostician, I am sure he will rule out what needs to be ruled out.

I really wish all of us could get access to same testing and expert interpretation.

Best.

 

[Marky90]

I would look at these results as a great finding that makes it easier for others to understand that, yeah, it`s in my head, but not in the way that you guys propose..

 

[Dechi]

Hi @Dechi, I concur with @halcyon there is no need to freak out, this is simply a report of what has been for the length of time you've been sick. You now have proof of paper that these symptoms you've had are not figment of your imagination.

Since Dr Hyde is such a great diagnostician, I am sure he will rule out what needs to be ruled out.

I really wish all of us could get access to same testing and expert interpretation.

Best.

Thank you !

 

[Dechi]

I would look at these results as a great finding that makes it easier for others to understand that, yeah, it`s in my head, but not in the way that you guys propose..

Ha Ha Ha ! You made me laugh, I needed it !

 

[halcyon]

I have low blood pressure, that is actually hogher when I take nimotop, and atypical orthostatic intolerance which will be tested at the end of january by a neurologist.

I was just curious as it didn't mention any issues with your brainstem.

Do you think this report really confirms I have ME or is there still doubt ? Thanks !

None of us can know 100% that we have ME as there is no test that can prove it. There isn't any specific pattern of abnormal SPECT that correlates with ME, but abnormal SPECTs in general in ME patients are a 100% consistent finding in some studies. I would say your findings could strengthen an existing clinical diagnosis of ME.

 

[Gamboa]

Hi @Dechi .

I would not be worried about this but instead happy that you are closer to a firm diagnosis of ME/CFS. I also saw Dr. Hyde and had a SPEC scan but mine was not as conclusive as yours. The low blood flow ( hypoperfusion) is more evident in your scan and is a great illustration to any who doubt your symptoms that you really do have brain fog, cognitive problems and fatigue. You now have proof that not enough blood is flowing to certain parts of your brain.

The spec scan can change depending on whether you are experiencing PEM or not and it is not a fixed state. You could have another SpEC scan next week and get different results.

By the way, where are you going for dysautonomia testing? Dr Hyde sent me to Hamilton to see Dr Guzman.

 

[Dechi]

Hi @Dechi .

I would not be worried about this but instead happy that you are closer to a firm diagnosis of ME/CFS. I also saw Dr. Hyde and had a SPEC scan but mine was not as conclusive as yours. The low blood flow ( hypoperfusion) is more evident in your scan and is a great illustration to any who doubt your symptoms that you really do have brain fog, cognitive problems and fatigue. You now have proof that not enough blood is flowing to certain parts of your brain.

The spec scan can change depending on whether you are experiencing PEM or not and it is not a fixed state. You could have another SpEC scan next week and get different results.

By the way, where are you going for dysautonomia testing? Dr Hyde sent me to Hamilton to see Dr Guzman.

@Gamboa He is sending me to the Jewish Hospital in Montreal, since I am from Quebec and near Montreal. I will be seeing the head of the neurological / autonomous nervous system, Dr Schondorf.

I have hypoperfusion but also hyperperfusion. I wonder about the latter. I have no idea what it means, as far as symptoms.

 

[Chris]

@Dechi, you might be interested in checking out some of the many research papers showing both hypoperfusion and poor connectivity among brain structures found in ME, and also the Vielight website and facebook page, where there is interesting evidence of the ability of particularly the Vielight Neuro (soon to be revised, I believe) to modulate both of these parameters. The Vielights have shown some ability to improve AD, but have not yet been tried on ME, though Dr. Eleanor Stein in Calgary has reported some success, but also "mixed results," with related Infrared devices made by Bioflex--check out her website.

 

[*GG*]

Hi @Dechi, I concur with @halcyon there is no need to freak out, this is simply a report of what has been for the length of time you've been sick. You now have proof of paper that these symptoms you've had are not figment of your imagination.

Since Dr Hyde is such a great diagnostician, I am sure he will rule out what needs to be ruled out.

I really wish all of us could get access to same testing and expert interpretation.

Best.

Yes, seems like an interesting test that I am not very knowledgeable about. I do recall though when Dr. Hyde came to MA and gave a talk to the MA CFIDs group. Perhaps some good info below, this is nearly 5 years ago now!

GG

https://www.masscfids.org/news-events/410-dr-byron-hyde-2012-fall-lecture-videos-posted

 

[Dechi]

@Dechi, you might be interested in checking out some of the many research papers showing both hypoperfusion and poor connectivity among brain structures found in ME, and also the Vielight website and facebook page, where there is interesting evidence of the ability of particularly the Vielight Neuro (soon to be revised, I believe) to modulate both of these parameters. The Vielights have shown some ability to improve AD, but have not yet been tried on ME, though Dr. Eleanor Stein in Calgary has reported some success, but also "mixed results," with related Infrared devices made by Bioflex--check out her website.

Thank you. I haven't been able to find anything meant for a larger public that I would understand, so far. I will check Vielights. What is "AD " ?

 

[Chris]

@Dechi--AD is the commonly used name for Alzheimer's, as PD is for Parkinson's. Will try to find time to post one of the more accessible papers on brain perfusion and connectivity in ME .

 

[Chris]

@Dechi--OK, try this very recent paper, by the Zinns and Leonard Jason: Zinn ML, "Intrinsic Functional Hypoconnectivity in Core Neurolocognitive Networks Suggests Central Nervous System Pathology in Patients with Myalgic Encephalomyelitis", PMID: 26869373 . This may not cheer you up, but as has been said above, this degree of brain dysfunction is common to aging and several classes of disease, including depression as well as AD and such. I don't know whether the Vielight Neuro will help, but it does seem to have some ability to improve AD.

 

[Dechi]

@Dechi--OK, try this very recent paper, by the Zinns and Leonard Jason: Zinn ML, "Intrinsic Functional Hypoconnectivity in Core Neurolocognitive Networks Suggests Central Nervous System Pathology in Patients with Myalgic Encephalomyelitis", PMID: 26869373 . This may not cheer you up, but as has been said above, this degree of brain dysfunction is common to aging and several classes of disease, including depression as well as AD and such. I don't know whether the Vielight Neuro will help, but it does seem to have some ability to improve AD.

@Chris Thanks. It looks interesting but it costs 40$ US if you want to read more than the first paragraph. :-(

 

[Chris]

@Dechi--sorry about that. Try these by the same gang: Zinn ML, "Functional Neural Network Connectivity in Myalgic Encephalomyelitis", or their "qEEG / LORETA in Assessment of Neurocognitive Impairment in a Patient with Chronic Fatigue Syndrome: A Case Report"; you should be able to get the whole papers--quite short.

 

[humanrising]

I would love to have a doc look at inflammation and the possibility of hypopfusion, also would love to see if there is any brain stem problems. I have had 4 whiplash injuries and 4 herniated discs in my neck, with my headaches, pots and cognitive issues I think its worth looking at. where is this dr hyde.... or the doc's first name? thank you!!!

 

[Marky90]

I would love to have a doc look at inflammation and the possibility of hypopfusion, also would love to see if there is any brain stem problems. I have had 4 whiplash injuries and 4 herniated discs in my neck, with my headaches, pots and cognitive issues I think its worth looking at. where is this dr hyde.... or the doc's first name? thank you!!!

I would think that those injuries possibly could account for your symptoms in itself?