Mayo Clinic Connect
Since I found out about this disease my whole life it’s really change dramatically. I don’t like what I became irritated, I’m snap easy to anyone my blood pressure is an control Doctor say I’m to your to have it.
Liked by Teresa, Volunteer Mentor, Solo Act
I’m so sorry to hear of this new diagnosis. I can imagine your concern. We do have some other members who have discussed this disorder. At Mayo Connect we encourage Members to get as much education about their disorder as possible. In order for you to learn more, here is a website from Mayo Clinic about this disease, http://www.mayoclinic.org/diseases-conditions/small-vessel-disease/diagnosis-treatment/drc-20352123. As you read it you will understand a bit more about small vessel disease and it’s treatments.
If you are comfortable sharing more, please tell us: How long ago were you diagnosed? What treatments has your doctor suggested?
We look forward to getting to know you and we hope that you find encouragement and support here at Mayo Connect.
Liked by Lisa Lucier, Connect Moderator, Solo Act
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4 years ago I do had angina on my main artery the Doctor find out I got 90 percent blockage they can put stent on it because is on main artery.they decide to do a single by pass. Since then I been feeling much better but 4 months ago I been having symptoms like light headed and severe head aches on my left front head and my eyes dramatically change a lot my blood pressure is an control I’m taking 25 mg Metropolol and 20mg lisinopril I don’t know what else treatment or medication he would recommend I’m so scared frustrated at the same time at this moment because I don’t had stable jobs right now no insurance. My memories is dramatically changes I was graduated as medical assistant I work as Medical assistant for 2 years last jobs I had I just walk away because my learning ability is changed a lot I don’t what to do I became forgetful confused irritable. Can anyone had the same symptoms? Please I need some advice.
Liked by Solo Act
Your symptoms are certainly difficult to deal with. How long have you had these symptoms of forgetfulness, confusion and irritability? Sometimes certain meds can cause these problems. If the symptoms are new, you might want to run this by your doctor. Additional tests might be in order.
It’s been 4 months now.
Liked by Teresa, Volunteer Mentor
Hi, @lhopper123. Wanted to add my welcome to Mayo Clinic Connect. So sorry to hear you are having these symptoms cropping up now a few years after your single bypass.
Thought you might like to get some input from some other Connect members who’ve discussed similar issues, like @swenglert, @oldkarl, @carnes, @fr0ggie, @amynewheart, @cynaburst, @murryone , @jms7 and @bibi12.
Which of the symptoms that you’ve experienced these last four months have been troubling you the most?
@lhopper123 Welcome to the club. I won’t bother you with a lot of details about me, just to note a couple things. I have had CABG 2X, 30 cardi-caths, and a few years ago was carrying 24 stents. I apparently have AL amyloidosis with cardiac, encephelo protein deposits, and several other items. It’s a family thing. Anyway, I have found that intentionally working my brain and my body are the most helpful things to do. I try to keep my mind going by doing advanced math, or by writing up my disorder experience (https://bit.Ly/1w7j4j8. Amyloidosis#900pdf –it’s free) or by responding on these lines. So far, I think I am still alive, and put all the energy I can from my 77-year old body and mind and soul into my activities. Oh, yes, and by holding hands with a pretty lady as often as possible.
Liked by Teresa, Volunteer Mentor, Lisa Lucier, Connect Moderator, Solo Act
@oldkarl — thanks for your tips on what’s helped with your condition. Love the part about holding hands with a pretty lady as often as possible!
I’m awaiting MRI results for probably the same diagnosis, and I have heart conditions but not the angina and blockage that you have. It might be of some help to realize that you’re irritable because you’re scared, as you say. That’s quite normal and understandable! I have been, too. Depression is also common. My memory seems to be affected, too, and that adds to scared, although it has become better since an incident that might have been a TIA in August. Your job situation makes it even harder. I’m lucky that I’m retired.
Exercise is not only helpful (brisk walking is sufficient) physically but calming, at least for me. If there’s any kind of local support group, perhaps through a hospital or senior center, that you could join for free, just so you’d have a place to express how you’re feeling and have some in-person support, I think that could help a lot. A few sessions with a counselor who could help, too, just to have someone to be totally candid with and get some guidance in adapting to the situation. There are free or sliding scale services in most towns.
It is NOT good to get really upset, because that raises your blood pressure and can have consequences. So please do try to get some in-person, local help to get through this tough stage. I want to be clear that I’m not implying that your reactions are in any way abnormal. I’m just saying you need and deserve some in-person support to help get through this. I know that feeling well!
Liked by Teresa, Volunteer Mentor, Lisa Lucier, Connect Moderator, livetheday
My name is Chris and I’m 46. My neurologist has no diagnosis but vascular brain disease. As you can see from my scan there is def something wrong My MRA just came back ok now they want me to have a spinal tap. I have sever long term memory loss. There are days I can’t walk at all. I fell in august and messed up my cervical and lumbar back so that doesn’t help. Hoping to get answers. I feel like everything is wrong. Headaches here and there. Always fatigued and tired. My right side arm constantly gives out. Kids say I’m moody dr says depressed. Just need to talk
@cmcnab371 Hi, Christ. Been studying your notes, and have stuff to say. It may help, it may not, but hopefully you will see that there are lots of us who want to help if we can. First, I am not a doctor, but I have studied a lot about my own issues, and think I have a handle on them. Also, I see that you have a number of signs and symptoms that are also s&s of my disorder. First, I have hATTRwt. Primary Systemic Hereditary Amyloidosis TransThyRetin Wild Type. Just remember the Amyloidosis, or Amy. The signs: Brain disease. With me, I have dead and dying protein building up in my Cortex as White Tissue. Scanned. 2. Memory loss. 3. Walking is getting to be difficult. Have fallen several times in the last two years. 4. Nodules, cysts, etc., pressing on my spine at several levels. 5. Frequent headaches. 6. Always fatigue. Difficult sleeping. 7. Doc thinks I am psycho. Diagnosis is on lab work done by ARUP labs in Salt Lake City, Mayo-Quant labs in Rochester and Phoenix, and California. SERUM FreeLite Assay (2.75 mg/dL), 24-hour urine/Protein (1.225G/24hours), GFR 41 then recovering, Also: Blackened toes, Black eyelids, macular skin, corneal issues, swollen tongue, sawtooth 12-lead QRS ECG, polyneuropathy, many others. About 230 S&S. Most of it listed in my writing about my disorder: https://bit.Ly/1w7j4j8 “Amyloidosis”.
i’m glad you posted, Chris. I have a similar situation (I’m in Port Angeles, WA) and know how scary and frustrating it can be not to get any clear, candid, or helpful info from even the specialists. I’m taking my test results to a more urban area (Seattle, probably) to get someone more experienced and better qualified to interpret them — I hope. When I find the right neurologist and can get an appt, that is.
Some of your symptoms are consistent with Parkinson’s, basal ganglia damage (even Lewy Body or vascular dementia, but less so?) — all pretty terrifying words, I know. HOWEVER, I don’t see any indication of any of those in the summary you attached, I think they affect a different area of the brain than where your primary problem seems to be, and I should probably not even mention those things — am probably “projecting” — because I am not a clinician of any kind.
These days, we have to be our own patient advocates and keep banging on the pipes even to get heard. Please do that — fight for yourself, but not constantly and not so the stress makes everything worse. One call a day might be a good goal. And I hope you’ll consider getting a referral for a consultation with another neurologist.
That’s my plan second opinion. But my scan has a lot of could be s. It definitely shows decreasing size which is scary at my age. I hope we both get answers. I wonder if I should worry with what my scan shows. My pain management dr said I have the back and brain of someone thirty years older than my age. I just want a diagnosis. Thanks
Some doctors don’t seem to understand that we’re grown-ups and for most of us, we can cope better even if it’s bad news if we just know what the heck the real news is!
@soloact You got that right, my friend. That is the chief reason I do my own backup on anything the doctor does tell me. And if the doctor does not trust me to say the truth, I know durned well that the doc will not tell me the truth.
I have been to Mayo a number of times and have been diagnosed with small vessel unstable angina. I see a cardiologist near I live currently. I have learned to enjoy good days and even enrolled in External Enhanced Counter Pulsation. Actually was feeling better and would have a day or two without any symptoms. I am in session 25 of 35. I get however very bad episodes of angina. Which I am currently experiencing, I have maxed out on Ranexa and Imdur and of course take my nitro with me and take an extra boost whenever it get outs of control. Just recently had another cath and the main arteries looked open and of course I was told how good I should feel knowing that my blockages on my major arteries were still 50 percent. My concern it that in the last week my pain has went much higher than normal, I usually top out before I stop doing things at 3, but now it jumps to 5 or 6. I cannot walk without it jumping up. I am blessed that I can get it to decrease if I lay down and become inactive. My doctor seems to not know what else to do. I feel so discouraged that I have become so incapacitated, I like to live a busy life. I need someone to give me a little hope that has been going through this. This has been going on for years.
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