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Muscle weakness and pain?

PostPosted: Sun Oct 21, 2018 8:03 pm
by gardengirl1975
Hello, I haven't done an introduction really - i'm still finding out all that going on. And I'm having to do it myself - 2 different neuro's over almost 8yrs have completely ignored my cavernoma which bleed frequently. They are in my left occipital lobe, and parietal lobe, but may be on big one that goes across, also small ones in my brainstem.
Ok! To the question! I started having leg and arm weakness around 10 yrs ago - a bleed had been found right before then, but I wasn't told of it, the weakness has gotten worse and worse, until now I can barely walk. I eat super healthy, stayed active way past when most people would - no smoking drinking, drugs, etc... I'm never ever not in pain from the weakness. Now my 18 yr old daughter has had a 2nd bleed (her first bleed was 3 yrs ago) - it was her complaining of leg weakness that got me insisting she have a brain mri - the dr did it just to shut me up, positive I was being paranoid - her brain is full of cavernomas. The 2 of us put together makes me think the weakness is a side effect of the cavernomas.... Does anyone else have leg/arm weakness and pain?! I've had so many blood tests it's nuts, 2 emg's (another tomorrow, last 2 normal), it's pretty well narrowed down. Course now I'm diagnosed with Cerebral Amyloid angiopathy, vasculitis and I have shwannomas forming in my spine, bad scoliosis and such - but the cavernomas and weaknesses came first. The only pain meds intake is kratom and too much tylenol. The kratom helps a ton, but it doesn't take the weakness away...

Re: Muscle weakness and pain?

PostPosted: Sun Oct 21, 2018 9:46 pm
by gardengirl1975
Another reason I think they are connected.... Everytime I have a tia/stroke trype incident, or a migraine, the dizziness/vertigo/bad feeling turns into a wave of weakness that goes down though my whole body, and it takes weeks to get back to just the general weakness. I also have spasticity - my leg muscles are in a state of constant spasm. I take Methocarbomal which helps - all other muscle relaxers mess my head up so bad I can't even take 1. I take 6-8 a day of those. 8 years ago while I was pregnant with my last, I lifted 2 75 lb houseplants 7 mo's pregnant (yeah, dumb, but i was always very active pregnant), my hip slid out of place, then 5 muscles and my right labrum tore in delivery. After I found about the cavernomas and bleeds, I wondered if maybe my weak muscles tore easy because of what's in my brain? This spring a hip surgeon put it together exactly how I was thinking without me saying anything first. I'm still waiting to have my leg sewn back on 8yrs later - I have a new neuro who is scared to have me go under anesthesia. Gonna find out next week..

Re: Muscle weakness and pain?

PostPosted: Wed Oct 24, 2018 4:11 pm
by PattiG
Hi gardengirl,

I'm so sorry for all the scary, painful misery you've been through and gross neglect from your medical communities! Unfortunately and sadly, it's not uncommon.
I'd strongly encourage you to contact the HCPs among the Centers of Excellence @ http://www.angiomaalliance.org/pages.as ... 482&id=422 to review your films, get you intelligent answers and hopefully provide a direction of care that is best for you and your daughter. In the meantime, no heavy lifting, blood thinners (including Alleve, aspirin, Sudafed and many herbal supplements. Also, no scuba diving or roller coasters.

Wishing you and your family all the best,
Patti

Re: Muscle weakness and pain?

PostPosted: Wed Oct 24, 2018 11:57 pm
by gardengirl1975
Is there anything a dr can do to make it go away? At least halt the decline? I had done some studying at tried creatine monohydrate mixed into gatorade - relieve muscle stress, replenish cells...something like that... and it started working - I had less muscle pain, could move around better. Then I had a more major stroke, and couldn't ever seem to remember to drink it...couldn't hardly remember anything. At this point I'm figuring I never getting my legs back....I kinda wish they'd chop em off and give me prosthetics! :( We'very read about Dr Awaad in Chicago, which is only about 2 hrs away, but I can't ever seem to remember to find the phone number to see if he takes my insurance... I finally have a new neurologist and he believes me, is doing tests, but after waiting so long - it's not going fast enough for me. Plus, he's out of network, and I've only been given 3 appts.
My previous neuro told me "I bet if you mri'd everyone, most people would have a cavernoma...they don't do anything! They are just there, and only in 1% of the population does it cause a problem".....I said, so mine is bleeding repeatedly, I'm having strokes, severe weakness and memory loss, I sometimes don't recognize my kids, but I'm not the 1%?!"....he said no, then told me I was having anxiety attacks.

Re: Muscle weakness and pain?

PostPosted: Sat Nov 03, 2018 6:47 pm
by Feelgood
Hey gardengirl,
I don’t know if this will help but after my surgery my right arm and right leg were weak. So after I got out of rehab I signed up for a gym. I really just did stuff that would strengthen them. Everything isn’t 100% yet but it’s at least better. Oh I haven’t done terribly heavy weights, at least for my legs. No weights for my arm yet.