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10/12/2009 06:43 AM

After-effects of RMSF

Dragon1951
Dragon1951  
Posts: 6
New Member

I'm starting to wonder about whether I had something else along with RMSF in 2005. Everything I've been reading on this forum from people who have had it seem to point to lingering pain and weakness or things like that. I ended up in a coma from brain swelling when I had RMSF which cause diffuse brain damage and stroke-like symptoms. This has caused memory loss, problems in concentration, balance, motor skills, weakness on my right side and difficulty concentrating. In addition I can't see angles any more. It's sort of like having no depth perception. Has anyone else had these sorts of aftereffects of RMSF? I'm really trying to get to the bottom of this to understand what happened to me better. My neurologist says that nothing will ever change for me because of the brain damage but I have gotten some of my motor skills back - playing guitar, for instance - but a lot of them are still gone.
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03/20/2012 02:30 PM
ToniS
ToniS  
Posts: 7
New Member

Hi Dragon1951,

I had RMSF for almost 2 yrs before it was finally diagnosed. I have all the above symptoms you're describing including the pain. It's been 4yrs since I was diagnosed & treated twice with the doxycycline. I'm not "sick" anymore, like I was, but the list of the lasting effects go on.

I can't tolerate heat anymore like I used to as this makes my symptoms much worse. I don't care what any of my doctors say, I was healthy as a horse before RMSF & now can barely walk down my driveway & back without being completely exhausted. I'm now disabled because of RMSF. Any feedback on how you're managing the symptoms would be great. - Thanks


03/20/2012 03:03 PM
Dragon1951
Dragon1951  
Posts: 6
New Member

Hi ToniS.

I got sick with RMSF in 2005 very quickly - one week. I felt neurological problems right away with my legs feeling unbelievably sensitive. I lapsed into a coma within a week with temps at 104+. I may have even had a stroke while in the coma. I had to learn to walk again and still have to walk with a cane.

I am weak on my right side and still have balance, coordination and concentration problems. I still have problems with short term memory as well and also have holes in my long term memory.

I've had lots of physical therapy for my balance and coordination problems and have had cognitive therapy as well to try to get my intellectual capabilities back.

Cognitive therapy included doing all kinds of visual problems and puzzles.

I also do Sudoku puzzles a lot to try to get my mind back into solving problems again. If I put the puzzles down for a week and then start them again, it's like starting to do them all over again. It's quite frustrating.

I also attend local TBI (traumatic brain injury) groups for support.

Post edited by: Dragon1951, at: 03/20/2012 03:05 PM


03/20/2012 03:20 PM
ToniS
ToniS  
Posts: 7
New Member

Wow, You & I have a lot in common. I also have mTBI. I'm supposed to go over to Southern Indiana Rehab for Cognitive therapy. I plan on going as soon as I'm able to tolerate sitting long enough. My left leg gives out & buckles causing me to fall a lot. I fell off a 6 foot ladder while I was painting & landed on the rounded part of the toilet bowl (ouch). I have pudendal neuralgia (extreme left butt pain)...I refer to it as my pain in the arss!! I'm getting caudal epidurals for that. It DOES actually help with the pain in my legs (more so in left), groin & Feet.

I have some long term memory issues. My short term memory's horrible.

I'm 35 years old & feel like I'm 75. I don;t go to the doctor for everything I'm experiencing because I don't want to be labeled as a hypochondriac or worse like I was by the previous doctor I had when I actually had RMSF. I told my story on my page.


03/20/2012 03:29 PM
Dragon1951
Dragon1951  
Posts: 6
New Member

I also take Parkinson meds for my legs - mostly my right one - because the brain damage I have from the RMSF damaged the part of my brain that produces dopamine. My legs start to shake a lot some times. I also have been left with little leg strength which is particularly galling because I was going to open a women's martial arts center (I have a 2nd degree black belt). I was born and raised in northwestern Ohio. Where are you in Indiana? We used to go to Fort Wayne all the time to shop when I was little. I'm 60 now.

04/15/2012 12:25 PM
ToniS
ToniS  
Posts: 7
New Member

I live in Greenville, IN which is about 15 minutes from Louisville, KY. Ya kinow, as far as the muscle weakness in my legs go, I've just recently been diagnosed with a rare muscle disease called Myasthenia Gravis. I've been put on a medication called Mestinon for that & it really seems to be helping some. On the down side, the one side effect I simply can't tolerate is the horrible stomach cramps...ugh

That's awesome that you're a 2nd degree! I made it to 10 for boxing, 10 in kickboxing & 5 in Judo! I loved it. I taught/instructed women's self-defense classes on the side when I was a police officer as well.

I really miss being able to do all the fun things I was able to do before the RMSF, brain injury & other disabilities.


04/15/2012 12:48 PM
Dragon1951
Dragon1951  
Posts: 6
New Member

Sorry to hear you have Myasthenia Gravis. Do you think it had anything to do with your RMSF? My case of it was different because the blood tests came back showing that I had RMSF (off the chart), Lyme Disease, Babesiosus and Erlichiosus. Quite a cocktail. My symptoms were quite a bit different from a "normal" dose of RMSF, as you can imagine.

That's so cool that you had all those degrees. I bet that really helped in your job as a policewoman. I really wanted to learn more about judo. I always thought that was a lot more based in reality for defending yourself than traditional martial arts training. The women's martial arts school I was going to open was going to teach a merging of the "art" and the real-life self defense and assault prevention that I used to teach as well. I wanted it to be a well-rounded program that was really for self defense as well as maintaining the tradition of Okinawa Kenpo, the original martial arts brought to Okinawa from China. Oh well. Life gets in the way.


07/31/2012 06:43 PM
Samdweed
Posts: 7
New Member

Hi Dragon- I am so grateful to you for posting about RMSF after effects. I have been too sick to work (self employed- no benefits) since mid May 2012. A gazillion tests at hospital, 3 ER visits, admitted for 7 days, antibiotics, no answers. RMSF came up in my blood work, but as passive, not active, so not a lot of attention was paid to it. Something last weekend made me search "after effects of RMSF" and there you were. I'm convinced that this is what has happened to me. I was hospitalized, ICU, fever, the whole 9 yards in 2000, diagnosis sepsis, but I am betting it was RMSF. That would explain the markers in my blood. Somehow I think I became susceptible to a partial relapse (that make sense?) and that is what's wrong now. It has given me tremendous hope that at least I will know what I am fighting, and I am searching for nutritional answers. I am certainly open to suggestions from you and others here if you know of any natural treatment that has helped. My guess and hope is that proper nutrition and exercise (yuk) will be the answer.

Again thank you for posting.

Sam


07/31/2012 06:59 PM
Dragon1951
Dragon1951  
Posts: 6
New Member

Hi Sam,

As a good, extended dose of Doxycycline gets rid of the RMSF disease, I doubt you've had any kind of relapse in the disease itself. But I wouldn't be surprised if you had lingering effects from the disease that raise their nasty little heads from time to time. For instance sometimes I can play 18 holes of golf (which I play to work on my balance and coordination) on some days but on others I can barely play 5 holes. It just comes and goes. It's quite maddening.

I can't really give you any tips on nutrition other than try to eat as sensibly as you can because you may not be able to exercise as much as you used to and the lack of regular exercise can certainly lead to weight gain. I used to run all the time but I can't do that anymore and it shows. I'm still trying to find an aerobic exercise I can do to help me keep weight off.

Rachael


07/31/2012 07:13 PM
Samdweed
Posts: 7
New Member

That's what I was trying to say: lingering effects. I'm having trouble putting words and thoughts together too. Just since May. Frustrating.

It all fits. I will keep you posted.

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