I have Cerebral Small Vessel Disease - so far caused loss of balance

Posted by sue60 @sue60, Apr 11, 2016

I have vascular small vessel disease that so far just has caused a severe loss of balance. I walk with a cane, but it is getting harder. Likewise exercise is not easy. I still drive short distances. I feel perfectly normal lying down and it is so much easier to do that. The sad part is I don't really see anything that is going to end this as otherwise I am healthy. I know there are many worse things. Does anyone else have this and how are you coping?

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Profile picture for arenee @arenee

HelloJust started searching, are there good support groups for CSVD and resources?Thank you in advance for any thoughts, comments and suggestions.

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I take Zetia and Rosuvastatin to try to manage the progression of my CAD, and since I am asymptomatic I don't need anything else. Unfortunately, the first symptom can be a fatal heart attack!

I was diagnosed with CSVD because I was having syncope type episodes and they did the neuro workup as well as the cardio workup. My MRI's show multiple hyperintensities where the ischemia is killing off brain cells as well as evidence of multiple lacunar strokes. I also have an abnormal EEG which is to be expected. My next neuro appointment is 3/12, so maybe I'll get some sort of update that I can share with you.

So far I don't think that this disease has yet manifested much in the way of cognitive problems except for a few isolated symptoms. My main problems are balance/fall related, occasional aphasia or slurred speech, and asymmetric hearing loss with tinnitus. I think everyone can have quite varied symptoms depending on what areas of the brain are being affected. If you have an MRI that states what areas are being impacted you can probably look up what functions are associated with that area and see if your symptoms correspond.

The most important thing is to live your life and not dwell on the negative (easier said than done). When my cardiologist called me with what sounded like a death sentence it shook me up. I started taking some antidepressants and anti-anxiety drugs to help me cope and have since been able to wean myself off of some as I came to terms with everything. I also did some cognitive behavior therapy which was beneficial. Do whatever you need to do to take care of yourself. Hopefully you have some supportive friends/family since that can help as well.

Best of luck!

Your MS diagnosis is interesting. My sister also was diagnosed with MS, and just recently they told her that many of her symptoms are likely caused by CSVD rather than the MS.

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Profile picture for caregiver49 @caregiver49

I don't think small vessel disease of the brain is well understood and it is difficult for any doctor to prepare one for what to expect. Symptoms occur due to changes to different parts of the brain so vary from one person to the next. Dr Michael Zeineh of Stanford University has been in the news recently about a relationship between Chronic Fatigue Syndrome and White Matter brain changes. Keep in mind that brain changes are more extensive in some patients more than others. Hopefully those with less will live to learn bio markers are confirmed that will lead to treatment. Presently my research has not turned up much other than controlling cholesterol, Blood pressure, thinning blood which is basically stroke prevention. Best to all.

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Hi I've also got small vessel disease of the brain.i don't know much as I'm still waiting on neurologist contacting me,last time I heard by phone call last October,I try to keep my mind off it by playing games on phone like jigsaws and quizzes.ive been put on blood thinners and BP tablets,I'm dieting and having steady walks as I walk with a stick.

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Profile picture for sally12345 @sally12345

Hi, I was diagnosed with csvd 3 years ago. I had an episode of off balance, dizziness, lose of bladder a nd bowel, heavy sweating, diagnosed with having had a stroke. I feel at this point it's effected my everyday life. At the time I was shocked with it...but now, I am tired, lack of energy, off balance, very sore eyes as well now. Also heart palpitations ...I think it's worsening...At the 3 rdyear point. Up to last year I was walking 35 miles a week. Chopped a nd stacked my own wood.. Now I am weak...it's frightening. How do you keep going with this.

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I'm so surprised that I've found someone who is having bladder problems like me ,tired lots, heavy sweating, stay strong do hobbies to keep your mind off it sally.

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Profile picture for red79 @red79

I'm so surprised that I've found someone who is having bladder problems like me ,tired lots, heavy sweating, stay strong do hobbies to keep your mind off it sally.

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Neurogenic Bladder I've an issue with bladder Signals from brain misfiring ...

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Profile picture for angelicscripts @angelicscripts

Neurogenic Bladder I've an issue with bladder Signals from brain misfiring ...

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Hi angelic scripts is that the reason we have bladder problems.

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Profile picture for sally12345 @sally12345

I am on a statin, high blood pressure pills , an aspirin a day, my heart is erratic, I fire very easily, and am losing interest in everything. Altho my cardiologist is ordering nuclear testing, she feels the disease is progressing and there is little probably can be done. I'm looking for any input from anyone. Dizzy spells and off balance has become a problem....anyone have any symptoms like this.

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Hi Amandajro, I'm also getting dizzy sometimes lose balance.im on satins and colpedogral for heart,BP tablets.

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Profile picture for Kerry Mapstone @jc2buds

My husband has small vessel diease of the brain and i agree dictors cant really tell you what to expect some days are worse than others but all days are challenging

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hi Kerry mapstone,I have small vessel disease,i wondered what you meant when you said some days are worse than other what are symptoms your husband having as I don't know anything about this.im still waiting on appointment with neurologist and haven't heard anything since last October when neurologist called me.

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Profile picture for red79 @red79

Hi angelic scripts is that the reason we have bladder problems.

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It could be however I've lumbar stenosis along with Cervical Spondylostis discs gone with encroachment of nerves ..plus an Arachnoid Cyst...I'm under uro/gynaecology
Neurosurgeons are dubious about operating that is When bladder/bowel loose all sensation ..if issue with bladder see a specialist...

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Profile picture for angelicscripts @angelicscripts

It could be however I've lumbar stenosis along with Cervical Spondylostis discs gone with encroachment of nerves ..plus an Arachnoid Cyst...I'm under uro/gynaecology
Neurosurgeons are dubious about operating that is When bladder/bowel loose all sensation ..if issue with bladder see a specialist...

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Oh I'm sorry to hear this,

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Hi sue60 I'm getting tired very easily when walking or doing housework,lots of really bad headaches,I'm lucky I got supportive family.could sleep constant if I had chance,you just have to do your best to keep your mind off it,I do jigsaws online and games on phone.the friends I had B4 saying what I got are non existent 😞

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