So Dearest Sjogren's Angels,
I saw the Epilepsy Specialist today. The diagnosis: my jerking and trembling, and my episodes of collapsing are related to worsening damage to my Autonomic Nervous System.
https://en.wikipedia.org/wiki/Autonomic_nervous_system
Sjogren's is a result of auto-antobodies attacking the parasympathetic system which is part of the autonomic system that controls the body's moisture production.
The second 'bad news' is that there no medication for my problem. The shaking is just moderately unpleasant, but the collapsing to the ground is downright inconvenient.
So, I will just have this condition, as it stays the same or gets worse, with no treatment.
I am very sick with this bronchitis which is going around, and that is new for me, too. I haven't been sick for over 3.5 years, since I started IVIG. So I am just not a happy camper all around.
The collapsing is an orthostatic problem (when I stand up) and a failure of my autonomic system to make the adjustments necessary to stand up without falling down. I've been tested several times for orthostatic hypotension (falling blood pressure on standing) and it isn't that So it's some other part of the adjustment system.
In fact everything is way more complicated in our bodies than those cartoon diagrams that I saw growing up. The human body is amazingly complex, and every time I see a new specialist my mind boggles.
The shaking and jerking and trembling of my left side is less clear to the doctor, but he's very clear that I don't have any form of epilepsy and that there isn't any known treatment or medication.
If anyone reading this has experience with my symptoms, do let me know. I feel very alone in this, but my husband is very supportive, which is a big help.
Hugs, Elaine
Dearest Elaine,
I am very sorry to hear the outcome of your appointment with the Epilepsy Specialist. I don't share your symptoms so my support feels flimsy, but I will say that you are not alone. I hear you. And what you are experiencing just stinks. You are one strong woman.
I am happy to hear that your husband is being very supportive, Elaine. Very happy to hear this. Hugs to you and your husband.
So sorry your dealing with this. I also have autonomic dysfunction with my SS, but after my last sinus surgery in August, it did something and my symptoms are much worse. I developed high blood pressure, I sweat more, so darn dizzy cant stand, bathroom issues etc. more trouble swallowing, everything much, much, worse. Surgery must have triggered this.
Its been a nightmare. My rheumy and cardiologists have all said its from the autonomic nervous system over reacting and nothing really to help. Im hoping to try rituxan soon to see if it helps at all, but Im not getting excited. No one understands just how debilitating this is. Again the lack of info on Sjogrens on this is lacking to say the least. Many of us have this, each to a different extent.
Hope you can find some relief with it.
Gursie
(((hugs))) I am so sorry you are at this stage in the disease. Our lives are harder when our bodies are out of sorts. I did not understand when the neuro told me I was be checked for sjogrens and I should be using a cane. At that time the two did not connect. I was told that there was nothing wrong with the jerking. I did not understand that comment until your post today.
I wish you all the best in managing this change in your health. Yes, I use my cane and I have a walker in the back of the van to use when we are out running around.
Sorry you are having such a rough time right now. I am sure you've tried the gluten free, dairy free approach at some point in this disease. It looks like you are taking great supplements and medications. I hope you find some answers for this and relief soon. Hugs!!!!
Oh, I have to add I did have a brain MRI two weeks ago. Nothing really showed except some white matter (normal). Its so funny to have this terrible symptoms just like MS and other neuro diseases and nothing shows up? this Sjogrens is just plain scary.....
Gursie
Caroline, sorry to hear that you have got so much going on with your health. It is terrible that you have to have those "falling spells" cause not only can it scare the heck out of you, but there is always a chance you could crack a bone. I hope you are not falling but sort of sliding down onto the floor.
Seems like this past year has been hard on all of the people on this forum. Hope things can straighten up for you, me and everyone else. Irish
Hi Irish and all. What fabulous support. Everything and anything you say to me is of great comfort and full of love.
Irish, I just sort of crumple to the floor. There is no 'momentum' in my fall because I'm not moving forward or tripping. My bones are very very strong (which is a very good thing). The worst fall occured when I was between pieces of furniture and I scraped my right side against a waste basket and got an ugly bruise, but not serious.
Because I wear braces, and because I have such profound Peripheral Neuropathy I really don't 'move' very often. Once I'm over this 'bronchitis plague' I hope to get back to the Fitness Center and into the pool for exercise, and onto the NU-STEP as well.
The Epilepsy doctor thought the falling/collapsing was some sort of autonomic problem, not exactly blood pressure, but more like signalling within the system. The jerking really has no explanation, but none of this hurts or is very scary.
With epilepsy the patient usually 1) passes out 2) and some forgetfulness about what happened) 3) loses bladder control. I don't have any of this, and I knew epilepsy wasn't my problem. But I had hoped the doctor would have a magic pill anyway.
HA, Magic Pill, where are you???
My most 'magic treatment' is my IVIG every four weeks, which has kept illness completely at bay for 3.5 years, and I'm sure it is moderating this bronchitis.. But this magic treatment is so expensive, beyond my wildest dreams of anything EVER, at $20,000/MONTH. I guess I'm worth it, someone has to be, right?
So, I'm not driving any more, ever. That means my husband will always be with me when I go out, which is good. And I have my medical alert, if he leaves the house and I am alone.
You know, I never expected to live past age 59, and here I'll be 75 in a month. So it's all just bonus time. And if this bonus time is rather challenging, at least I've found you guys.
Hugs, Elaine
Elaine, I am sorry!
MY autonomic symptoms are more subtle and I have never fallen from them. However, in my POTS support group my friends have the symptoms you describe. I can ask them about the jerking because I think that one of them was having worse jerking as a side effect of some medication.
In terms of standing up, I do not have OH either. However, wearing compression is extremely helpful to me. IT is less for your ANS to "handle" when you stand up if the hose are already doing some of the work. You can put them on first thing in the morning and see if that makes a difference. I use 20-30 strength but some people need 30-40. There are some nice brands out there. I'd be happy to share the ones I like.
Thanks, Nymph,
I have some compression stockings, which we wear for long flights, like to China.
Where is your POTS group? Is it on line?
I definitely have something from standing up. I think I've ruled out the medication I'm taking, but I'm open to all ideas.
This bronchitis is reminding me why I'm so glad to don't get sick any more (except for this bronchitis of course!). Being sick sucks.
We've been shopping for a new car the past two days since one of our cars was totaled recently. I really dislike car shopping. It just feels so fake and phony. I mean why is it a negotiation? Can't it just be the price is the price?
Well, soon it will be over, since we've pretty much decided what we want.
Cars have so many features now, It's wonder they don't brew fresh coffee too!
Hugs, Elaine
Compression stocking are a treatment of the autonomic system postural hypotention. It is just possible that you would benefit from putting these on in the morning. I know they are a pain to put on. The Jobst stockings require a prescription to be eligible under medicare, I believe. Also, if you can find someone to help you with these stockings it helps. They take a lot of endurance and energy to put on.
Another thing you could do is put on ACE wraps on your legs. These have their bad points also as they tend to slide down and have to be rewrapped during the day. Sometimes people benefit from some compression just up toe the knees. If you need it up on the thighs then the stronger support hose work better as they give more consistent support over a larger amount of vascular tissue in the legs. Good luck. Irish
Hi Irish,
I think the problem is the same one I have with my toes. My toes are purple because there is so much nerve damage from my neuropathy that blood is not pumped into my toes adequate.
So I makes sense that my lower legs, with profound neuropathy, have so much nerve damage that the veins do not get enough help to pump the blood up to my upper body and head?
I will ask my husband to help me put on the support stockings.
Question? can I wear them over night?
Hugs, Elaine
Hi Elaine, with your circulation problems it might not be a good idea to wear the stockings over night. I would ask whichever doc knows the most about your neuropathy. Many people use the strategy of putting them on in the morning in bed before they get up.
Yes, the POTS/Dysautonomia group is on Facebook and it's called Dyslife Carolinas. As I recall, you live in NC, so there is probably also a local group in your area that meets up on a monthly basis or so. I have met some lovely people through it, and gotten a much clearer picture of how serious the issues can be, as mine is fairly mild.
If you ask to join just tell them I sent you. :)
Elaine,
Your type of collapsing is very common with orthostatic hypotension. And I will add that it can be difficult to confirm this Dx because you have to catch it in the act (of BP dropping) in 'some' cases. I assume you have had the tilt table, both with and without the medication to prompt an episode??
The autonomic system controls basic functions, but doesn't just collapse without involving one of the major systems, like BP, heart rate, GI tract (which sometimes can cause problems with the vagus nerve...you should read about this and see if it fits your symptoms). So something is being triggered and causing the collapse. If it is the BP ( and they haven't 'caught' it yet), then there IS medication to treat this problem...actually several different medications to keep people from passing out. I have had this autonomic dysfunction (of EVERY autonomic system) for over 20 years now and can tell you I understand the frustration and bothersome. I too have some shaking...just my left side, but, like you, it's not a big deal (I just drive on). The BP however, is a different story and mine is so bad that they 'caught' it the first time and every time they check...it is that bad. Even with medication, my BP drops 30+ points upon standing. The medication may not eliminate it, but helps me to be able to function.
You need to be evaluated by an autonomic specialist (different than an epilepsy neuro). There isn't many of them (that solely specialize in the autonomic system), but you may find one at Duke, where you get your other care. There are numerous things involved in a full autonomic battery of testing.
The stocking are to increase BP...by means of compression (as blood tends to pool in the feet of those with orthostatic hypotension). You indicated you don't have a problem with your BP. You should not wear them unless you have been Dx with this condition. If your BP is normal (or even low from orthostatic hypotension) and you lay down with these stockings, then you may cause an unsafe increase in BP (called supine hypertension). This is also common in those with orthostatic hypotension or autonomic failure. So please talk to your doctor before using the stockings...and ask for an autonomic specialist to help pin-point your condition, so you know what part of your autonomic system is causing the collapse (BP, HR, vagus nerve etc). Also, there are general stockings, but those with this condition are "fitted" for stockings with specific/proper pressures...so you want to have these prescribed by a doctor.
Hope this helps.
Hi Anita,
I know you have POTS and was hoping you would comment.
1) I haven't had the tilt table test. I haven't seen an autonomic specialist. But two cardiologists checked me, two years ago, for falling BP, when standing, and I didn't have it at all. This was before I developed the falling, which was just last spring. Don't ask why. I had actually asked to be referred to check my SFN, and wound up with cardiologists.
2) I don't pass out when I fall, I just crumple.
3) I take medication for HIGH blood pressure. With that med. my blood pressure is OK.
4) So YOU have the shaking too? Is it just orthostatic? Mine is. although I have some odd tremors and movements at rest, too.
5) I have a self-use BP cuff, and my BP doesn't drop when I check it, either.
6) I will try to get a referral to a doctor at Duke who specializes in autonomic problems. But honestly, I've checked out all of the autonomic problems and I don't seem to 'fit' into any of the categories. However autonomic problems seems to be more complex than just categories, or at least I think so.
7) Right now I am just discouraged about this entire problem, and I'm also in the second week of the three-week bronchitis from Hades...so I'm not really ready to start on another quest for answers, quite frankly.
I am in a 'discouraged phase'. That doesn't usually last very long.
Hugs, Elaine
The tilt table is the standard test for orthostatic hypotension...I'm surprised you haven't had it done. They can check what IS happening when you 'crumble' by constant monitoring of your vital signs during the change in position.
There is an entire autonomic battery of tests that can be done to check various parts of your autonomic system. I'm' sure Duke would have an autonomic specialist there to help determine what is happening.
Yes, I have the shaking one just one side. It doesn't seem to be related to orthostatic though...but still just my left side shakes.
Now that you mention the med for HIGH BP, it is even more important that you NOT use the compression stockings until a doctor orders them...as they can increase your BP (because that is what they are designed to do).
Just so you know...falling BP when you stand does NOT happen every time (even for most patients with orthostatic hypotension). Just like you don't 'crumble' EVERY time you stand. BP drops can happen frequently or infrequently in any patient, so sometimes hard to Dx this...especially by just having the patient stand and take their BP to see if it drops (like cardiologists do in the office). Why the tilt table is a good test...as they can tell what is happening DURING the change of position, not just after you stand.
Dear Carolina. I'm really sorry about what you are going through. But I'm also very grateful to you for setting out what you've been told in such a clear way. My late mum had very similar symptoms for the last five years of her life before dropping dead suddenly at 73. My dad had diabetes and also had many autonimic features even as a young man. He would suddenly drop while crossing a road. He broke his ankle this way and walked with a cane for decades prior to his first heart attack - caused by late onset diabetes. He too died suddenly at 73. It transpired that my mum had severe atherosclerosis that had never been discovered by the few medics she sought out. Both had quite rational explanations for their own physical declines but nevertheless it's quite an inheritance! So I'm grateful for your post because it gives me a different perspective. Neither of my parents had Sjogrens or any other connective tissue diseases.
Your description of symptoms is so like advanced MS and even MND. And yet Sjogrens is still, at best, only really known about by the public at large as a disease suffered by Venus Williams?!
I can see the bewilderment in my GP's eyes when I describe my latest symptoms and ask if these might relate to my Sjogrens. They half heartedly affirm with expressions that tell me they really only know Sjogrens as a disease that causes dry eyes and mouth, at best. I can tell that if I didn't have this confirmed diagnosis it would all be classed as "functional" - as was starting to occur prior to my lip biopsy.
And really, from all you say, there isn't a lot of difference in the way it's treated. But there's a huge difference psychologically in knowing the cause and understanding the very rudiments of the mechanisms and being realistic about the prognosis. I'm very glad that you have such a supportive husband and can access complimentary therapies and physio that help you live with this level of disability at least.
I have similar symptoms to a very small extent - worst part affected is currently my GI system - which doesn't seem to be very functional at the bottom end at all. I don't have your quakes but I do have the SFN and because of you, Irish and Anita and others, I'm much more aware of where this might lead than I would have been otherwise. As a pragmatist this is good because forewarned is forearmed!
Mine has been described by my neurologist as "presumed ganglionopathy of Sjogrens". I would like to be tested by an autonomic specialist to have clarrification but, with the NHS currently in tatters - and no healthcare insurance (in common with the majority of UK residents still) there's not much chance of this. I have twitches and resting weakness in my limbs and heat and cold intolerance with no sweating and proprioceptio issues, all mildly and all probably down to Sjogrens. My BP is usually just rather high despite BP meds and I don't have your falls yet very thankfully.
But more than anything your post makes me feel how urgently more research is needed into Sjogrens and autonomic dysfunction - even if it's a relatively rare presentation of this disease as I'm told. I read Facebook posts and posts here and wonder if it's quite as rare to have Sjogrens affecting the whole body and autonomic nervous system as my doctors suggest? I keep hoping that the research done by Birnbaum at the John Hopkins will at last filter down more into the rheumatology and Neurology communities here in the U.K but I fear that in these financially straightened times this is very unlikely to happen. There tends to be eye rolling from medical professionals here about the kind of testing done in the US I'm afraid - and IViG is not on the menu here at all unless things get a whole lot worse. There is no protocol for its use for Sjogrens here.
So your experience and realistic resignation about your prospects remind me to utilise my physical faculties while I can. And I do hope like anything that more is done for those with Sjogrens related PoTS than can be done at present. Scary stuff really -but i admire your pragmatism and hope that you overcome your bronchitis soon and your choice of car works out well. Take care and best of luck.
caroline, I am just sitting here thinking of you and trying to make sense of your attacks. It would probably be wise to do the testing for autonomic disease but I know it gets old running to the doctor all the time.
I did wonder a bit if you have had your carotid arteries checked what with your history of artery disease. This can cause some interesting symptoms also. Do you fall every time you arise or periodically??? Just curious as it really does sound like a positional thing that could have many causes. Good luck in your qwest. Irish
I'm with Irish, Carolina. My mum died suddenly after years of ignoring sudden crumpling and the beginning of vascular dementia. It turned out that all her symptoms related to severe atherosclerosis and a carotid duplex rather than a brain CT (she was given on her Bupa insurance!) would have shown this. The rest was peripheral artery disease which she also failed to get checked for. Coroner said all could have Beeb adddessed.X
I agree with Anita, sounds like a complex dysautonomia. There are quite a few people with dysautonomia with high BP. Treatments may be quite different. There is an autonomic specialist at Duke. Some people really like her and others not so much. Camille Frazier-Mills. She has a syncope clinic. I believe that they can do a complex tilt there with catecholamine monitoring. If not then there is always Mayo (Rochester) or Vanderbilt. For extensive reviews of any of these clinics see DINET forums, where people talk about their experiences going to each one.
Right... DON'T wear compression with high BP unless a doctor approves. It could backfire. Some people do but usually they have labile, not high, bp. I hope that you figure something out and find someone who really knows their stuff.
hugs,
Nicole
I saw Camille Frazier-Mills about three years ago, before the falling and jerking/tremors, started. She did the standard sit down stand up test, and my blood pressure was fine.
I've asked for a referral from the two neurologists I've seen, and now I know that Dr. Frazier-Mills is the doctor I should see.
I FELL AGAIN YESTERDAY. I hit my head on the bed post, but not badly. It is really really upsetting when I collapse. I didn't even know it was happening until I was almost all the way down.
What I need, probably, is things to do to prevent the lack of blood flow to my head (my husband says that is the problem, why I fall).
Maybe sitting down and standing up several times before I start walking? OR not sitting for more than 10 minutes without getting up and moving? I could set a timer on my phone to go off every 10 minutes.
That's what my hair stylist insisted I do while I was waiting for my hair color to 'take', because I had fallen in her salon in late December, with both her and her assistant holding my arms!
I need mechanisms to make this less likely. I don't think a medication is available for this
YES, Irish, I had my CAROTIDS scanned in 2014, after my first arm jerking experience. They were fine then.
I cannot express enough my gratitude for your caring and attention. I am really have a problem with this falling, emotionally as well as physically.
And of course still in the second week of the three week bronchitis. Feeling better. Will get back to exercise soon, and that will help my 'sense of well being' for sure.
Hugs, Elaine
I was diagnosed with POTS few years back. Think Ive always had some form of this, pretty mild until my hysterectomy over 10 years ago when It just blew up after. No fainting, but extremely low BP, problems with going to the bathroom, Hypermobility, dizziness, sweating/cold etc. The doc didnt want to put me through the tilt table, convinced I did have POTS. I ate more salt, lots of potato chips and still have not been able to take baths or showers. I sit it the tub and sponge bathe basically. Extreme temp changes send me for a loop. Summer is horrible to deal with. Anyways, was managing until my sinus surgery last august. I woke up feel super dizzy, problems breathing, anxiety, depression, seems the POTS got alot worse. I thought it was temporary like my docs said, but still having these issues. Guess what!!! a week after surgery I developed high blood pressure??? not too bad 135/90, and still cant get it to go down. My sodium/potassium levels low too. I saw my POTS doc about 2 months ago and he said my ANS was likely damaged, and that most autoimmune patients wont recover. There is no medication etc and the fact the side effects of most medications just make it worse. I guess my point is, even after going to these specialist, what can be done? not much from what I understand. My gastroparesis is alot worse. I can barely get anything down and my intestines dont work either. Its very, very, upsetting and scary. Im going to try rituxan again because there is no other options.
Gursie
One of the things they always tell people that fall after standing, is to sit up on the edge of chair, bed etc first, then wait a couple minutes. Then stand slowly, but next to something to hold...wait again. Then start walking. It gives your body time to adjust to the change in position.
One thing that is VERY common is blood pooling in the feet of those with autonomic dysfunction....hence the stockings. But you must be confirmed in having this (and blood flowing away from the brain) before using the stokcings...due to possible increase in BP (especially if you already have high BP).
The BP drops other experience can be very quick...and most immediately wake up or are ok within seconds. It seems for you it only takes a small amount of blood leaving the brain to cause a reaction and make you drop. They will also need to look at your current BP medication ,now that you are having this problem.
The sit down BP then stand up BP is NOT the same as the tilt table. It is similar but nearly as precise. I'm sure you will be asked to have this done, so they can find out exactly what is making you collapse. I know they said it was autonomic, but they need to find out WHICH part of your autonomic system is causing this...like BP, heart rate, etc.
Hi Anita,
At this point what I am doing when I stand up is this: I stand up, then sit down, then stand up, then sit down and put my head between my knees.
The odd thing is that holding on to something doesn't help prevent the collapse, since I lose all muscle tone, and let go, even of my walker. This is why I wonder if my collapse isn't something neurological rather than from blood flow problems? Brain tumor? NOT epilepsy.... just so odd
The standing and sitting and standing and sitting and head down behavior should insure that blood is flowing to my brain if that is the problem.
While I asked for a referral to the clinic at Duke that tests for autonomic/dysautonomic conditions, I don't think I'll go.
What would be given to me (medication) if I'm found to have problems with blood flow to my brain (or within my brain for that matter)?
If there isn't something I can take to eliminate my falling, I might as well just 'do this procedure'' and hope to prevent falls.
You can see that I'm discouraged. The folks on the Dysautonomia FB page are not enthralled with the Duke Clinic (and they are Carolina people). They suggest Mayo.
I think that at almost 75, and with a long history of conditions, I should try to prevent the falls with careful standing up and exercises before embarking on walking.
Worth a try.
I was so shaken up by the fall...and it is the complete collapse with no warning that is so unnerving, that I just panicked.
Hugs, Elaine.
Elaine, I'm not surprised that you panicked. It is really difficult when you have so little control. There ARE meds that help some people, though. It does seems to be different meds for different people. I have had success with a simple (but pricey) OTC supplement, but many others try numerous meds at various doses to find something that helps. I guess that my message is, Don't give up! Your safety, mobility, and happiness are worth it. I know that you've said that you're on bonus time, but 75 is not that old! Just my dad's age! Hang in there. I am rooting for you.
Well, see how it goes Elaine. However, that type of action (up/down) will not make it easy for BP to keep up in the brain. The slow process of standing up (taking up to 5 full minutes) is what they recommend for those with orthostatic issues. But everyone is different. Try your theory and see what happens. If it doesn't work then try the standard slow process I suggested.
You should go ahead with the testing. There are several medications to help...but it all depends on WHY the blood is not staying in the brain (BP, HR, etc). You have to be tested to determine that...it is not a guessing process. It may just be an adjustment of your current BP med. Let the doctors do their job and figure it out for you.
it will likely take a while to get the appointments for the testing, so you can try your standing routines while you wait for your appointments. If they work and you have no more problems, then cancel.
Dear Carolina,
I am so very sorry to hear of the latest bad news. I have myoclonus though at night. I too was tested for epilepsy (negatory) and MS (also negative). The first two times I experienced myclonus (involuntary jerking) it was related to Plaquenil. That said, it returned even after I stopped take Plaquenil.
Along with the myoclonus I developed occular migraines, neuropathy in hands and feet and mild neuropathy along my left side (my right side has not been tested). My neurologist, rhuematologist and physical therapists all chalk the neuropathy to my neck/spine disc problems but also to Sjogrens.
As for the myoclonus the cause is unclear. I have been taking Gabapentin now for about three to four months to control the jerking, deal with the migraines and to address tremendous nerve pain (again from discs, but docs say probably also Sjs).
I live with concern that these issues, particularly the neuropathy, will progress, but neuropathy is something docs know little about and there is no treatment. I hope for you that Anita is correct and that you can find some relief, this is no way to live!
Hugs.
Do you recover from this quickly or does it take time and maybe nap to get you feeling better. I am thinking of Tran Ischemic Attacks that can cause unexpected decrease blood to the brain. This usually ends up with people falling. They don't know it is going to happen until it is over or almost over.
Probably not the culprit, but the fact that this occurs when you change positions is bugging me. Good luck. Irish
So sad after reading these stories about what alot of us are dealing with. They never really mention this when referring to SS. Its horrific.
Hope you can find some relief and answers.
Gursie
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
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
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)
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
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
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