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The Good News: No Epilepsy. The Bad News: Autonomic Damage is Worse

Started by Carolina, January 30, 2017, 06:39:40 PM

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Carolina

Dear all:

As you know my husband is a research Immunologist (retired) who taught and did research at a medical school for 25 years.  For 10 years of that time he taught gross anatomy.  He also did transplantation surgery on rats, dogs, and goats (eek, I know).

He knows the body in ways we cannot even begin to imagine.  Not only the anatomy but also how things function (relationships, even biochemical relationships).

SO, his theory is that since I had severe coronary artery disease with three angioplasties (opening of coronary arteries) and two stents (wires in the arteries to hold them open), at age 57, now at age 75
I clearly have plaque (build up of the material of blockages) all over my body.  He thinks that I probably have narrowing of the blood vessels in my brain.  I showed up with white matter glioses in my brain on an MRI in early 2010.

http://www.netwellness.org/question.cfm/79854.htm

Small vessel ischemic white matter disease usually refers to abnormalities seen on imaging of the brain (typically an MRI scan). It indicates low flow or small strokes due to narrowing (stenosis) of small brain blood vessels. Depending on how severe the damage is, it may cause balance problems or cognitive impairments (memory or thinking problems). Gliotic refers to gliosis or an increase in glia cells usually due to the death of neurons (brain cells). This is hard to determine on imaging alone and would need a brain biopsy and a microscope to see. None of these terms means dementia (trouble thinking and functioning). Most people with this finding do not have dementia unless the condition is severe.

As you can see the gliosis indicates death of brain cells due to narrowing of small brain vasculature.

The MRI was 7 years ago, and the condition may have worsened. 

I guess I will ask for the referral to the autonomia/dysautonomia clinic at Duke and I would also like another MRI of my brain. 

I just need time to prepare myself for another round of testing and doctors.  The past 9 months, with the sudden onset of these symptoms and then the onset of my severe sciatic pain and the back surgery in October have set me back a bit and now of course I'm in the second week of the three-week bronchitis.

But I'll keep going, of course!   

Hugs, and love, Elaine

Female-Elaine,83-CVID-pSJS-WMD (Eylea)-COPD-Inter. Cys-PN-CAD-Osteoarth-SFN-Erythromelalgia-SIBO-PMR-Adrenal Insufficiency-Hearing Loss-Achalasia-Bacteriurea-Power Chair-IVIG Gamunex 50 gm-Medrol-Wellbutrin-Buspar-Gabapentin-Atenolol-Salagen-LDN-Lipitor-Premarin-Nexium-Om.3-Repatha-KLOR-CON-Maxide

Nymph

Thank God for your wonderful, talented, and wise husband! Hoping and prying for you that you will quickly find the direction that will benefit you most.

Hugs,

Nicole
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot

quietdynamics


DH has coronary disease, mutliple by-passes, stents and angioplasty and diabetes which affected both legs; this year stents in both legs and angioplasty as well.
After heart attack 2015 he was on a trial of Brilinta and has been on ever since.
Ticagrelor (trade name Brilinta, Brilique, and Possia) is a platelet aggregation inhibitor produced by AstraZeneca.

There is also Plavix (clopidogrel) helps to prevent platelets in your blood from sticking together and forming a blood clot.

If you recall DH is an organic scientist/ Pharma. He won an award for making a molecule to compete with Plavix (synthetic chemistry).

He states Brilinta is by all account superior to Plavix.

I know more tests are a drag.. but another hoop you will step through (since you can't jump)
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Carolina

ah, I jump only in my mind.  Remember skipping?  wow.  I used to climb to the top of the tallest tree, and jump from the highest possible point.  Fearless.  once upon a time. 

And here I thought DH was just a sexy guy on a motorcycle....who knew?  So you have a great resource as well as a sexy guy!

I was on Plavix for a few months after my angioplasties and stents in 1999.  But not now.

I don't appear to have the degree of problems that your DH has.  My circulation in my legs is fine, tested several times over the years, and while there is some plaque in my carotids and aortic arch, nothing serious, yet.

I think the best thing is that I have escaped diabetes, so far, QD.  That complicates everything.  I hope at almost 75, diabetes is not in my future.  When I was in the hospital with my heart procedures in 1999 everyone smiled so broadly when I told them I was not diabetic.

But the shaking on my left side and jerking, and the falls are probably a cerebral problem, and if not epilepsy, then oxygenation problems, I guess.  I had white matter damage in my brain on MRI in 2010, and I've been reading about it (big mistake) and if there are changes for the worse in these white matter lesions then I'm in for an unhappy future.

I'll just remember to stand up/sit down several times, and put my head between my knees.  The head between the knees may actually be all I need to insure more blood flow to the brain.

Right now, I feel pretty good.  Got to the pool, hot tub and steam room!  I felt strong.  So maybe I'll have a few good months now....cause I have plans for travel to Germany, Iowa and to the beach this summer.

Hugs,  Elaine



Female-Elaine,83-CVID-pSJS-WMD (Eylea)-COPD-Inter. Cys-PN-CAD-Osteoarth-SFN-Erythromelalgia-SIBO-PMR-Adrenal Insufficiency-Hearing Loss-Achalasia-Bacteriurea-Power Chair-IVIG Gamunex 50 gm-Medrol-Wellbutrin-Buspar-Gabapentin-Atenolol-Salagen-LDN-Lipitor-Premarin-Nexium-Om.3-Repatha-KLOR-CON-Maxide

irish

Are you on a baby aspirin every day? I am wondering if one of thes a thoughte blood thinners would help to keep the platelets and blood cells from adhering to any plague that you might have in small vessels. Sometimes the debris piles up in these vessels and the vessels can occlude as you well know. Just a thought. I'm sure your hubby has already considered this issue. Good luck..Irish

Carolina

Hi Irish,

I did the baby aspirin at night for years.  But I stopped several years ago. I am slightly a 'bleeder', not serious, and I think the Low Dose Medrol also could make me more prone to bleed.

My cholesterol is very low since I'm on 80 mg of Lipitor (Atorvastatin) for 17 years now.  But of course it is the damage to the arterial walls from inflammation that is the underlying problem.  That creates openings for the plaque to form in.

I will ask for another MRI of my brain to see if there are Changes in the White Matter damage.  That is the key.  Changes=problems,   No Changes=good outcome.

Stay tuned!

Hugs,  Elaine
Female-Elaine,83-CVID-pSJS-WMD (Eylea)-COPD-Inter. Cys-PN-CAD-Osteoarth-SFN-Erythromelalgia-SIBO-PMR-Adrenal Insufficiency-Hearing Loss-Achalasia-Bacteriurea-Power Chair-IVIG Gamunex 50 gm-Medrol-Wellbutrin-Buspar-Gabapentin-Atenolol-Salagen-LDN-Lipitor-Premarin-Nexium-Om.3-Repatha-KLOR-CON-Maxide