Spect Scan Results

[HopeSprings]

My CFS Dr. sent me for a Spect Scan. The results came back showing a problem is several areas of the brain- "there are small focal regions of mild relative diminished uptake of activity identified in the frontal regions bilaterally, as well as in the medial right temporal lobe and right thalamus." When I look up what functions these areas control, a lot of things begin to make sense - sensory, memory, information processing etc. This "mild" issue sure is causing me a lot of problems. The Dr. said this finding is typical in CFS and in particular since I had a positive Tilt Test, as the Spect looks at blood flow in the brain. This is the answer I've been looking for - proof of blood flow problems. This is also a little depressing because can it be fixed??? Anyway just thought I'd share because I know a lot of you have these types of neuro symptoms - maybe a Spect Scan is a test to consider.

[corina]

Thanks Naomi, for sharing this. I've been struggling with neuro cognitive problems for years now (I think due to low flow) but it's quite difficult to get the testing to prove it. I hadn't heard of Spect Scan before.

I'm sorry you're struggling with this also. Especially as I've noticed that although I've found a pretty good working combo of meds to keep POTS in control, the cognitive problems stayed. But we're all different so it might be different for you. Happy that you've found an answer and hoping that you cognitive problems can be fixed!

[bellgirl]

Thanks, Naomi...this is the test I've been looking for, but I didn't know what to ask for. Is it like a functional MRI? That's what I was going to ask my neuro about, since he said he would do another in 6 months. Now I have pupils that are unequal, and since my dad had a cerebral aneurysm and many strokes before he was deceased, I would love to have some feedback in this area. Are you already getting IVing? That may help with some circulation issues, just asking?? Sorry you are having these issues, as well, but I'm glad you have doctor's who know what to test for...and maybe will be able to help with medication to increase blood volume. I'll pray for proper treatment!

[HopeSprings]

Honestly, I don't completely understand the test. It's a nuclear medicine test. They give you an IV of radioactive material which has to absorb for 45 minutes - then stick you in the Spect Scanner - which I closed my eyes for because I'm claustrophobic and would freak out. I guess it's similar to an MRI or CT scan, but they look specifically at the "uptake" of this radioactive material by the brain. Areas that "uptake" less I guess are the areas with blood flow problems. Images I've seen online show color, rather than just structure. I still haven't talked to the Dr. (only a quick e-mail) so I don't know much. I'm doing my first IV saline trial tomorrow and have already been on the anti-viral (for EBV) for a week. Thanks for asking... and praying.

[DoozlyGirl]

Naomi,

Congratulations in finding some answers to your puzzle. Do you know which radiopharmaceutical they gave you for your Nuclear Medicine Brain Scan? There are several different tracers available to image the brain.

You are correct, that the radioisotope will show the perfusion/blood flow within the brain, which is called uptake. Diminished uptake can show lesser perfusion.

You also are correct in that nuclear medicine scans provide information on the physiology or function of an organ, where CT and MRI's provide the anatomy, structure or shape of an organ. To answer Kimbellgirl, functional MRIs (fMRI) also provide physiology or function of the organ. BTW, SPECT is the name of the technique of the scanner and stands for Single Photon Emission Computerized Tomography, which means it gives 3 D images, similar to CT.

Best wishes,

Lyn

[heathmcev]

Naomi, were you lying down for the test? It would be interesting to have this sort of test done sitting or standing since it seems blood flow to the brain would be at its worst then... And would give a clearer picture of exactly how much the brain is affected. I wonder if it's even possible to have it done upright?

(null)

[DoozlyGirl]

Dizzyde,

SPECT scans are performed laying down due to the equipment configuration. But 2 D planar imaging on some scanners could be done sitting. It wouldn't give as much detail, but could answer your questions.

Lyn

[LindaJoy]

Naomi, I'm sorry to ask, and I apologize if you've already addressed this here, but how were you diagnosed with CFS? Did you have the three viruses checked--EBV, CMV and HHV-6--and one or more was found to be high? How are you doing on the anti-viral? Which one are you taking, if I may ask? And, who is your doctor?

I'm sorry to ask so much, but I just found out that my HHV-6 antibody is high, and I was being tested for CFS, so I'm interested in your journey through this. I hope that's okay.

I'm interested in your spect scan, too, but more scared of it than anything! Any test involving injection of stuff into my body terrifies me, and I avoid them whenever I can. Maybe that's to my detriment sometimes.

Thanks and take care.

Linda

[jangle]

That's interesting, I remember reading on some earlier posts that some people with SPECT scans showed mild global hypoperfusion. Yours seems to be only in certain regions of the brain, and I wonder if those regions are where the peripheral nervous system innervates the brain.

It'd be nice if researchers did a clinical trial of SPECT results with POTS patients because I'd like to know if it is mainly global hypoperfusion or regional hypoperfusion we suffer from.

[HopeSprings]

Yes, would love to know what things look like upright. I'm assuming if there are blood flow problems laying, there would be even more standing??

Linda- Long story, but in 2000 I saw an endocrinologist presented all my crazy symptoms and she tested for a bunch of things including EBV. The early antigen levels were very high, indicating an active chronic infection. At the time she told me she thought I had CFS. Little was known then and there was nowhere to go with this. 2007- diagnosed with POTS (after many many Doctors). Fast forward to 2011, I beg my PCP to find out what underlies my dysautonomia and I show him those old records from 2000 - so he re-tests EBV and the early antigen was still really high. He told me he thought this was my problem and recommended I see an Infectious Disease/CFS specialist. She's in NYC - I can give you her info if you're interested. I learned CFS and POTS often occur together - hmm, interesting. She looked for a bunch of viruses including the 3 you mentioned and still EBV EA was high and also HHV6 was very high and a few other ones (CMV was negative). She also looked at natural killer cells and found my levels to be low. All of this is apparently typical of CFS. The brain scan just adds more evidence. She suggested a few things: low dose naltrexone to help immune function, IV saline because of the POTS, anti-virals for the viruses and an antibiotic for M. Pneumoniae. I like to try one thing at a time, so we agreed to start with the anti-viral - I'm taking Famcyclovir. No huge side effects so far which is unusual for me. I'm going to have to take it for months to see if it helps. I'm not sure about this whole CFS thing - those viruses could mean something or nothing. But I now have 3 Doctors who think it could be an issue, so I'm willing to give this a try. I don't like injections of anything either and am extremely sensitive to medication - the radioactive stuff didn't bother me at all.

[bellgirl]

Lyn, thanks for your answer on Functional MRI; that's what I was going to ask for...also the testing for viruses, as well. I was only tested for Lyme, but not the others. Thanks Lindajoy, and Naomi for the information on the viruses. I always suspected EBV, since my symptoms initially were similar although mild form of this 14 years ago.

[targs66]

Interesting topic. I think some of my symptoms are like yours, Naomi. I've been told I have CFS for years. I have tested positive for EBV and HHV-6 (but the tests were many years ago, so I don't know details). My biggest problem has always been devastating exhaustion, including concentration problems. It's only in very recent years that I've developed dizziness, vertigo and BP problems (I have NMH, not POTS). I've always thought it must have something to do with a lack of blood to my brain.

Please keep us posted on what you find out - ? I'd be very curious to know what this diminished brain flow does to the brain? Is there any danger of it causing long term damage?

I'd also be grateful if you could pm me the name of the NYC doctor. I saw a CFS specialist there in the late '90s (I lived and worked there then) and am curious if it's the same person. I'd be happy to let you know my thoughts on her, if it is indeed the same doc.

Many thanks. I really hope the new recommendations make a difference- good luck!!!

p.s. Thanks to Lyn for all the detailed info on SPECT scans, etc.!!

[HopeSprings]

I spoke to her today and asked if it could be anything else, like Lyme and she said no because of the pattern (where blood flow problems are) is more typical of CFS. I asked if this can explain some of my symptoms like the cognitive problems etc. and she said yes. She again said this goes along with a positive tilt test - which I guess she equates to blood flow issues. Doesn't sound like much can be done except trying to treat the underlying cause. I've read that Lyme patients who have been treated show positive changes on their spect scans after antibiotics, so hopefully it's not a permanent situation. Targs- I will PM you.

[RichGotsPots]

i"ve mentioned this test before on the forum. The study i posted said the best way to do the SPECT test was to do it supine and postural so you can see the difference. did they do that for you? Either way you found what you were looking for. very cool!

I want to have that evidence for my chest flow ploblems!! Wish they had a spect for the chest. I had a profusion test which is similiar but didnt do it standing and supine didnt show anything, then again they mainly look for clots not flow issues like your doc was.

If i knew flow issues were my main issues I would try some vaso constrictor meds, midocrine, octreotide and a few more. Because the flow issue is believed to be because of blood vessels dont constrict fighting off gravity like they do in regular bodies.