Granny's gone and done it again

[twisted-acres-farm]

 

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[bhawk-23]

Sounds like I....was. I got one diagnosis after another. . Myelopathy, Occipital Neuralgia, Fibromyalgia, Peripheral Neuropathy, Vestibular Migraines.. added up to Lupus.
I kept going to drs..for years. I finally found a Neurologist that actually spent time with me. 3 hours! And I mean 3 full hours in office, not counting on the waiting to get in.
He diagnosed me with several of the things above..not all.
I've been taking medication for separate things. I'm super, super sensitive to medications.
In fact, you all know I've been on eye drops. I felt horrible while the kids were gone. I'm a prayer as most of you know. As I did one day the thought of the eye drops came to mind. My eye wasn't feeling as bad. I looked up eye drops. Sure enough they can get into your bloodstream, and cause dizziness.
Of course they can. I stopped them. Took a couple of days but I started feeling better. Now I don't use them as often as I was told to. I'm heading to a Neuro Optometrist i saw a few years ago come Monday. I think I need to get rid of these prism glasses. Will see what he thinks about thus eye. Hope the inflammation is gone.

You really went through it, physically, mentally and emotionally I am so glad you found the right Dr and got an answer.

My symptoms have line up with lupus on and off for years but my SA (antibodies?) were negative twice (12 yrs ago and then this past December) and the systemic inflammation comes and goes. I do have Crohn’s disease but that is managed.

I firmly believe that whatever I am dealing with currently is from the RMSF infection. I know I was diagnosed early and treated but the symptoms worsened during and after the treatment which my neuro and GP just ignored. I could not handle it anymore and went back to urgent care, 4 months after initial diagnosis and treatment. Luckily I had the same Dr and he treated me a second time. Some of my symptoms were really hard to function with like the nonstop extreme headaches, neck stiffness, heat/sun intolerance, and more but the most concerning was the extreme personality change. I was literally acting like someone completely different, no inhibition and absolutely NOT MY NORMAL self!

Now I cannot drive far (sometimes not at all), grocery shop easily, be outside for any length of time if it is sunny and/or hot. I have to wear noise cancelling headphones and be ready for any sensory crap to trigger an episode. I cannot sit in the ice arena and watch my son play hockey without an episode being triggered by the sights and sounds. That was my favorite thing to watch and now it’s just so damn difficult. Over the winter just leaving the house was a crap shoot to which they respond with “so you are improving”. Ummm, I’m accommodating to try and function, not getting better. I was feeling well May 2024 and now my life is completely changed. The only thing that has happened is a decline since the RMSF infection June 2024. Why don’t they see this as an issue to offer a little more time towards figuring out? I worry about the long term sequel of RMSF, the cns/vascular inflammation, and why my neurological system is not going back to normal. I already have epilepsy and extreme headaches/migraines so I’d guess my CNS is already susceptible to any changes. Is this just my new normal?

Holy crap I just unloaded….I'm sorry

Hopefully my neuro’s colleague can offer more insight as to the why and how but I’m not holding my breath.

 

[twisted-acres-farm]

 

[twisted-acres-farm]

Thought of a certain member here when I saw this one.

 

[twisted-acres-farm]

 

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[twisted-acres-farm]

well I am "off" to do "stuff' just not sure what "stuff" exactly.

You all have a great day and be safe.

I know better than to tell you all to be good.

 

[pertnear09]

I've been trying to have some quality fun time with DH. Dr says part of healing is to keep the morale up. My 2004 jeep have up the ghost so yesterday we went car shopping. I chose a ford maverick because it has an SUV base but it a pickup truck. It's low so I don't need to see him struggle to get in and out. It's a hybrid so it charges it's battery while driving but also uses gas.
It will be my car but I left DH do the test driving and negotiating and he was in his glory. It took us from 12:00-6:00 and we were weary. But DH is very excited. It has a smooth ride like an SUV, heated seats, heated steering wheel. I would say buying a new car is a man's delight. They had different colors and DH picked a velocity blue ride.
Plus they have him a good special deal. They must have known they were brightening up my man's day

Nice looking truck. I hope it serves you well. So they resurrected the Maverick in the form of a truck. When did that happen?

 

[Cynthia12]

You really went through it, physically, mentally and emotionally I am so glad you found the right Dr and got an answer.

My symptoms have line up with lupus on and off for years but my SA (antibodies?) were negative twice (12 yrs ago and then this past December) and the systemic inflammation comes and goes. I do have Crohn’s disease but that is managed.

I firmly believe that whatever I am dealing with currently is from the RMSF infection. I know I was diagnosed early and treated but the symptoms worsened during and after the treatment which my neuro and GP just ignored. I could not handle it anymore and went back to urgent care, 4 months after initial diagnosis and treatment. Luckily I had the same Dr and he treated me a second time. Some of my symptoms were really hard to function with like the nonstop extreme headaches, neck stiffness, heat/sun intolerance, and more but the most concerning was the extreme personality change. I was literally acting like someone completely different, no inhibition and absolutely NOT MY NORMAL self!

Now I cannot drive far (sometimes not at all), grocery shop easily, be outside for any length of time if it is sunny and/or hot. I have to wear noise cancelling headphones and be ready for any sensory crap to trigger an episode. I cannot sit in the ice arena and watch my son play hockey without an episode being triggered by the sights and sounds. That was my favorite thing to watch and now it’s just so damn difficult. Over the winter just leaving the house was a crap shoot to which they respond with “so you are improving”. Ummm, I’m accommodating to try and function, not getting better. I was feeling well May 2024 and now my life is completely changed. The only thing that has happened is a decline since the RMSF infection June 2024. Why don’t they see this as an issue to offer a little more time towards figuring out? I worry about the long term sequel of RMSF, the cns/vascular inflammation, and why my neurological system is not going back to normal. I already have epilepsy and extreme headaches/migraines so I’d guess my CNS is already susceptible to any changes. Is this just my new normal?

Holy crap I just unloaded….I'm sorry

Hopefully my neuro’s colleague can offer more insight as to the why and how but I’m not holding my breath.

It was actually my PCP that did the test for Lupus. The other .. neuro..saw the the other things.
Hey..are you dizzy at all? Feel like you're swaying back and forth on bad days? This is what I now one of my biggy things I deal with. One of my many diagnoses. I'm hearing a lot of the symptoms in you. Look up Vestibular Migraines. I call them silent migrains, but man this delivers a whopping amount of other symptoms. Look it up.
It's interesting how an illness like your infection could trigger another. Stress! You have a lot going on, so you stress. Does not do a body good!