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Old 02-24-2009, 08:48 PM
ras1256 ras1256 is offline
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Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
Default My symptoms

Thanks for all the replys. Hopefully you guys can let me know if ANYTHING in my symptoms sound way off base or not.

History - 20+ yrs. ago, I noticed several times while playing cards into the night with friends that my R lid would droop - I would comment on needing a toothpick to hold my eye open so I could keep playing. Don't remember how long that went on but it was always better in a.m. so I never pursued it.
I haven't ever felt an eye droop since back then.

1991 - Car accident with severe whiplash and cervical disc injury, I had a period of time (again, I dont remember how long) that I was having difficulty swallowing even water and choking on food. That resolved as well, but I do choke on liquids, even saliva, sporadically and shortly after my last dx I was having a problem with swallowing, chewing, etc. when I was bad.

1996 - Collapsed after shopping with my daughter. Everything went away - fell flat on my face and couldn't open my eyes, respond to my husband and daughter or even brace the arm my husband had lifted when he let go to keep it from slamming to the floor. Months later, after a pos. tensilon injection I had the preliminary dx for MG, but came up anitbody neg. and
my neuro at the time said the RNS was negative. He was an idot though, and I have good reason to believe it wasn't a good test. (He then said I needed to be in a psych hospital and didn't even try to find anything else - I think I offended him when I told him it seemed when he was doing the test that something wasn't working right.) At that time - I couldn't get around by myself due to weakness and spent alot of time laying on the couch barely breathing and wondering how you could possibly be that weak and still be alive. That total-body-absolute weakness would last for quite a while, then I would pull out of it on my own. Months later I was dx'd (different neuro) with cord compression and after surgery on my neck I was able to walk, but never seemed to regain the ability to make it through an excercise session. Over the next several years the amount of physical activity I could do declined more and more before I would be exhausted and have to rest, I started getting these brain fogs that were noticeable by others, etc. I couldn't seem to get my house cleaned in 1 day anymore on the weekend as I had done for years. Rest would perk me up, but not enough that I could resume activity. I would get double vision at work toward the end of the day (which I mistook for blurry vision for years), but it was only when focusing up close.
Oct 2003 - when I had been pushing real hard at a new job and getting a 50th anniv. party together for in-laws, the leg weakness started again. I was having problems with another disc bulge, so went to my neurosurgeon. At that time I was showing hyperreflexive in my legs but the MRI didn't show any compression. In December the weakness resolved mostly.
April 2004 - While eating a bagel on the way to work by neck starting feeling stressed, I suddenly couldn't keep chewing, couldn't swallow and my legs were starting to fade. I reclined in my seat as much as possible to get to work to rest. There, I called from my cell to tell them I couldn't get out of my car. They called family to come get me and my boss came out and sat with me until family got there. He said later that when he helped transfer me to my daughters car it was dead weight. I couldn't help at all. My husband carried me into my surgeon, and when I didn't show hyperreflexive but was so much weaker she mentioned myasthenia. She hospitalized me, called in a hot shot dx Neuro, ordered full spine and brain MRI. The Neuro tested my legs with them straight out and found no strength. Having me focus on her raised finger I went into double vision. Her RNS showed 76% decrement in an upper arm muscle ,23% in the face and minimal (don't remember the %) in the forearm. That with the positive tensilon in 1996 caused her to dx me MG - she said for sure, absolutely. I crashed and burned on a pulmonary function test - just suddenly couldn't do it and difficulty breathing until I took some mestinon. I was never in ICU for crisis, but am told I should've gone a few times. Just sick of drs./hospitals and the whole thing! My dog saved my life once by pestering me enough to get my adrenaline going enough to know I needed to signal someone to get me Mestinon. (She went and laid down after I came out of it) I had a thymectomy in 2004, did the IVIG (didn't notice much from that), took prednisone, then imuran with the mestinon.
Anway, I was told by my fave neuro in 2007 that I was controlled and she felt the other symptoms I had were residual from my cord compression, making me look more like MS (occassional bladder incontenance, numbness, tinglin and painful spasms) but they had looked for MS for 8 years and it's never shown.

I was controlled or in remission until I had this aneurysm coil procedure 1/27/09. I ran a low grade temp in the hospital after the procedure, but didn't do anything at all for 35 hours. They had me walk around a small area, then immediately sent me home. I was very tired at home and didn't try a shower until the next evening. All I got done was shampooing my hair. My legs started feeling that "work out to hard" feeling, then my arms were to stressed to finish. Then I think I had a drop in BP cause I barely made it out without passing out - no breathing difficulty or double vision. I lay on my bed for awhile, and felt recovered enough but the leg weakness was still there and still is. Symptoms now are chiefly leg issues - unable to stand without using my hands-wicked fatigue in the afternoon, talking too much has started to weaken me again, I get hoarse as I get weaker. I'm starting to notice more vision problems, though no droopy lids. By the afternoon at work I usually am supporting my head in my hands or my neck feels overworked. My mid upper back gets weak if I sit without my head resting on something or if I stand to long (getting ready for work). I get better to varying degrees with Mestinon (my RX is about a year old - do you think it's too old?) I have brain fog pretty bad too when I feel weak which the Mestinon helps. I have had to cut my work hours and have called in sick or left real early 3 days last week. The prednisone did help by the next morning and even more by the next night - didn't even need the Mestinon to get around. By day 4 (Sunday) I was supplementing with Mestinon and by day 5 on the 60mg x 3 and still not great. One thing I do have is this weird rash - been around for about 6 mos. though, so I don't think it has anything to do with it directly. Itches and migrates around from back to tummy to legs to face to chest. My doc and dermotologist have thrown some steroid creams and ointments at me for it but it never went away completely. They weren't exactly sure what it was. It was going away pretty fast when I took the prenisone orally, though it is back again just as before now already.
Is this something my neuro needs to see? I've been wondering if a germ or allergy to something combined with the recent procedure could have gotten me started again. It definately has SOMETHING to do with that coiling procedure in my opinion.

Again, sorry so long - and I'm not usually this big a whiner/complainer...honest ! It's just that it was a long scary pull to get to remission before, and I don't know if I have that much fight left in me now. Sometimes I think I'll just blow the drs. off, retire from work (can't really afford that!!!) sit home and get fat and sassier. My husband isn't too crazy about that plan, though , so I guess I'll just keep
Becky
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