Falling down with CV and fibro

[Kat13]

Hi there. I am a 57 year old woman with a long history of Cerebral Vasculitis ( primary). I also have fibromyalgia. This morning when I got up, I quickly fell back down onto the bed. No pain. No blackout. I tried again and maybe six times total and each time fell to my right side and luckily onto the bed. I have had many different strange symptoms over the years but never this and it kind of frightened me. My rheumantologist told me to go to emergency if it happened again. Has anyone experienced this? Any suggestions. Thank you!

[Melon]

Probably a good idea to see if you can identify the symptoms a little more clearly. For instance - Did you experience any dizziness? Were you trying to step forward/move in anyway when you fell? Did either of your legs give way? Foot collapse at the ankle? etc. Identifying this while the incident is still fresh in your mind will help your doctors when discussing it in the future.

I do have muscle weakness (power loss) occasionally with PCNSV which has given me problems in the past including foot drop or difficulty doing something which I can normally do.

Hope this helps.

[Kat13 in reply to Melon]

Thank you Melon for your reply. I began to have tingling Sensations in both legs a couple of months ago though my hands have been tingly and/or numb for a year. When I fell I was trying to take a step and my right leg was not cooperating. I always fell to the right. It was as if my leg was made of jello. No pain, not from any particular part. Very strange sensation. I was thinking to myself, "I can't walk."

[Melon in reply to Kat13]

These are very familiar symptoms to me.

[Melon in reply to Kat13]

Sorry - was short of time last time I replied. They are odd feelings aren't they? Most of the time I get them I find everything works but there are times when the power just isn't there or is reduced. It can be difficult when your body is unpredictable. Try not to let it get you down.

[woollysox]

I have Cerebral Vasculitis too and also get this reduced power thing where my legs, especially the right one, feel as if the power has suddenly been switched off or as if someone is playing with the switch and flicking it quickly. That's the best description I've heard - thanks for that Melon. Sometimes I fall down, but most of the time it looks as if I'm dancing or jiggling about. It happens when I'm tired, physically or mentally, so it's an indication to myself and everyone that knows me that I need to rest.

I also get numb fingers then too and foot drop.

I used to get tingly fingertips but after I was diagnosed with steroid induced diabetes and put on tablets for that, it improved greatly.

I wish I could offer a remedy or wise words, but always having a stick, furniture or a trusted friend to hold onto for support at all times is the best I can do.

[Kat13]

Thank you Woollysox. It is reassuring to hear from those with CV. I love to hear what everyone else has experienced. My rheumatologist recommended I go to ER to get a CAT scan (even though my experience has been they don't show much. ) It was normal for me and the doctor thought it was vertigo. I have never had vertigo before so I don't know. The dizziness is subsiding. Does anyone feel that their sense of depth perception has been affected? I used to be a very good parallel Parker and now I am terrible!! The car ends up three feet away from the curb or ON the curb! Sometimes I worry that things like this are the beginning of early dementia from the Vasculitis. Has anyone heard of that connection? I am searching for words and my memory is terrible from fibro. I try to always move forward regardless but I have been having these nagging thought as I see my brain power diminish.

[woollysox]

I know exactly what you mean with the fear of dementia. My word finding skills are terrible, memory is totally up the spout, some days I can't even count to twenty without repeating numbers and my bladder control is poor - it's like being a toddler again! And yes, my depth of perception has gone too. This, combined with lack of concentration means that I can no longer drive. I did ask my neuropsychologist about possible dementia (I'm 59) but she reckons that it's all down to the disease. I'm happy to believe her for the moment.

[Kat13]

If I may ask Woollysox, when were your lesions last active? And did they rule out MS? I am sorry that you have experienced all this and it sounds so familiar to my own experience. I thought my fatigue and poor word search etc was from fibromyalgia that began after my only "flare" two years ago when everything really changed and I went on disability. Maybe it's not the fibro but the damage caused by PCNSV. It s really hard to tell what is causing which symptom. As I said when I started with the falling and dizziness, I thought MS. Leg tingling and vertigo are symptoms of MS. BEcause I had such a bad time trying to find good doctors after the last round and was living in a state of panic, any new symptoms cause another round of panic. I am trying to just let it go as I am getting on a cruise ship in a week. I made sure to buy an excellent medical insurance package. IMagine the cost is being air lifted off a cruise ship!!!!

[woollysox]

Hi Kat, I was diagnosed with PCNSV two and a half years ago after three TIAs in three weeks. The consultants initially thought that it was MS but after shed loads of tests they found beading in my brain and changed the dx. This misdiagnosis seems to be quite common with this illness, but then the docs are told to look for the obvious first.

I have to have an MRI with contrast every six months now to keep an eye on things but haven't had any new lesions for over a year. I'm currently reducing my pred very slowly after being on huge doses all this time but am also terrified that I'll relapse as that could mean another stroke or that one of my aneurysms could blow.

I'm really chuffed to hear that you're going on holiday - how exciting! Take it easy and try not to overdo it and exhaust yourself Have fun x

[Melon in reply to woollysox]

Hi Woollysox. Just read your comments. Our symptoms are very similar. The brain confusion can be a real pain can't it? My consultant does really see it as a problem because I can pass the 'remember these 3 things' test with ease but doesn't keep me from making a fool of myself with word confusion. Spelling has become very difficult too. I am fortunate as in my pcnsv is low grade (mild). I take a short course of pred when it flares up which happens about every 6 months. Nice to speak to people with similar issues...reassuring to know that you are not alone in the craziness 😂

[woollysox]

Ha, tell me about it! I feel like a real moron sometimes, when I can't find the right word - and by the time I do I've forgotten what I was talking about. It doesn't help that I'm bilingual, so have twice the vocabulary floating around my brain and muddling me even more!

Thank goodness for spell check and 'cut and paste', as my spelling abilities have gone AWOL too. However, predictive text does no favours whatsoever - I really don't need my sanity being put any further in doubt!

[Kat13]

Thank you Melon and Woollysox. I have thought that all my cognitive "challenges" were due to fibro. It does really make sense though because all these symptoms started when I had my first "flare" and seizure two years ago. I think had they been due to fibro, I think the symptoms would have developed more slowly. I begged for prednisone during that time but they would not give it to me. IF bleeding lesions are not on the MRI, they will not prescribe predispose - period. ( in Canada) I understand that I may have had a lifetime dose During initial onset in 2005 but still!!! I cried uncontrollably for hours after that appointment with my rheumy. THank you for writing and reassuring me that you too have had similar experiences. I am leaving for Amsterdam to get on the ship today feeling less worried!

[CanaryDiamond10]

Hi Kat13: I haven't seen a post from you in a while. I don't know if you remember me. CanaryDiamond10. We both have CNS vasculitis. Over time my diseases have multiplied. I have antiphospholipid syndrome (which is what the rest of the world calls Hughes Syndrome. I was wondering how you are progressing in the last 3 years?