So I'm frustrated now. My gait improved after a few nights in the hospital and then I came home and did fine for a bit over a week. Just a little issue with my gait here and there but nothing noticeable.
Today I was having a good time with my husband and kids at a local festival and started having spinal pain near my tail bone that radiated to my hips. Ignored it because either way I have no diagnosis that's concrete yet so I figured IF its CD like they said then I can "ignore it" away. Then as I'm walking my legs give out and buckle now its BOTH legs taking turns buckling under me.
Continued to ignore it and have fun but I walk like a drunk and its annoying. The pain in my hips got more severe so I took a break. After we came home from the festival we were at I went to lie down. The pain was still there and was sharp but I used distraction technique to think it away. I got up after a half hour because I had to do something. Even with all my positive thoughts, ignoring the symptoms etc they hadn't gone away and I can't be one to just chill in bed and not do life....the pain was still there. I take extra strength tylenol but it doesn't work anymore. But I don't have anything else besides motrin and I was told to stop taking naproxen because I have an issue with a renal mass the size of a baseball. But they said its benign and not affecting my health at all.
I am still highly skeptical its CD because I have a pretty good life. Do I have it easy or is it perfect? Heck no but its not that bad. I have great kids, I get along with them well, I have a wonderful husband. Its not like I suspect he wants to leave me or anything like that. He's a fantastic guy. Next weekend we take a break from the day to day to celebrate our 9th anniversary. We have a fun filled day planned with lots of romance sprinkled in.
I haven't even been really focused on this illness, whatever it is.
I know I said its not MS. I can hold my bowels, I can hold my urine. I don't get constipated. I'm regular.
But I'm just venting. I have severe chronic itching in my thighs. ITs not everyday its a symptom, like my others, that come and go at will. When its here its painfully itchy if that makes sense. I feel like I could claw through my skin. If its not my thighs and legs (usually it is) its my trunk and torso.
I hope they figure it out but the neuro won't see me until September 26th and I KNOW once they think you have CD even if YOU have zero reason to have it...you're just a nobody. A blip on the radar. Even though, like I said, they didn't run all the other tests to rule out organic causes they just made that assumption based on a brain mri and cat scan. No spinal mri, no lp, no eeg. Two tests and I'm labeled as crazy, seems legit.
They also mentioned migraines. Which can make sense. Not only do I get spinal pain in my lower back but also in the neck area that radiates down the the middle of my back but mostly located where the spine is at it doesn't travel to my muscles in my back. If that makes sense? It feels like my spine is going to crack especially at my neck.
When the pain is in my neck I can hear a grinding and then my ears ring all day!
I WISH I knew what this was because for it to even be considered psychosomatic like CD doesn't ring true to me.
/Vent over.
So that's a pretty comprehensive break down of symptoms. Leg itchiness/leg burning and numbness has been going on since 21 ish so I never considered it anything until now. And maybe it is nothing. Its just a pain in the *** amount of nothing.
Thank you. Yes that's what I meant lol. Sleep study. I haven't had one yet. I keep getting pushed back on that. I see my primary next week. I definitely think I have an undiagnosed sleep disorder. Certainly would make more sense than a mental illness that I have no reason to have.
My legs keep falling asleep and my arms so hopefully it's just a sleep issue.
Thanks for the conversation and chit chat! I know misdiagnosis of cd is getting slimmer and slimmer but there seems to be too many docs saying "cd" when they get done with a few tests.
Hi Lizzy! In the early part of my diagnostic process, I finally saw a psychiatrist. At the end of our appointment, he clearly told me to remember the date of our consult, and if any future physicians (ER, referrals, etc.) tried to blame my symptoms on anxiety/CD/MH to kindly direct them to his note on my EMR. He was very frustrated hearing about all the armchair psychiatrists I'd met along the way lol. Apparently you've met one as well.
I'm glad you saw the psych -- I encourage you to carry his notes with you to future visits in lieu of an EMR.
Have you had a sleep study? I'm guessing no, and that's what you mean by a sleep analysis. It will likely be very helpful to you. I've had sleep paralysis once -- (medication reaction) -- wow that is really scary. I can't imagine doing it regularly. I had severe sleep apnea during REM sleep, and waking during REM is, I understand, the cause of sleep paralysis.
Much of your current sx could be due to sleep deprivation so hopefully you are getting closer to answers!!
Best wishes.
Hmmm well i really like a psych who is prepared to call a spade a spade, and duffus neuro a duffus neuro :D, i think you're probably on the right track or at least have somewhere to start, let us know how you get on please but feel free to stick around, we may or may not be able to help much more than to listen and give you support, lol but we're good at that....
Cheers........JJ
Thanks for replying! Like i said I doubt it's ms but there is no cd forum here at medhelp and it seems like all of the cd folks come here. Probably because CD is famous for copying MS.
But I don't even think it's MS. Ms doesn't present with sleep paralysis and waking nightmares and hallucinations.
The other night when I had a bout with sleep paralysis I woke up for real and the left side (which is my weakest side) was experiencing sharp pain all the way from my left cheek down to my calves. Intense sharp pins pain.
So I'm investigating and sleep paralysis does present with narcolepsy. Which makes sense as that disorder also runs in my family.
My primary when I was a teen (my ped) was supposed to test for narcolepsy because that's what she suspected.
And she never did. My new primary was supposed to do a sleep study and I got forgotten until these symptoms came on. So hopefully some light will shine on this soon.
But the psychiatrist said that he's tired of neuros passing the buck because CD (bonafide CD) is rare and almost always follows a traumatic life event or exists with someone who already has a mental health history. And I didn't fit in with anything of CD.
I mean one doctor also mentioned complex migraines. But then all the other "votes" said CD. The psychiatrist said he hopes I get more tests that they certainly didn't do everything they could before calling it CD which he said he hates when they pass the buck.
Hi Lizzy welcome to our little MS community,
Please please give me strength.......... i'll go out on a limb and say no you don't have CD, seriously nope, nadda, zip chance, unlikely, laughable etc etc etc CD ain't the MOST likely explanation from anything you've mentioned, seriously the only thing that could of ever put CD on your possible causes list in the first place was the unfortunate luck of the draw and getting a neuro to lazy to consider anything else!
Is it MS, probably not but you have a neurological history through out the majority of your still young life and 2 of your children have epilepsy too, that neurological poka-dot elephant simply can't be ignored as a more likely 'possible' explanation than the conversion disorder idea, that even after being admitted to psych you still can't even be officially diagnosed with because it's wrong wrong wrong, errr really wrong.
Okay now i've hopefully lightened your mood :D don't be a CD skeptic, just like any potential alternative medical explanation, mental health has well and truly been ruled out, one idea that has been proven to be off your list, so now you need to find the best epilepsy neuro in your area, hmmm kids doc may be a good place to start.....talk to someone who is going to take you history into account and give you some logical directions to follow but do not let this go, be your own advocate and make it happen!
Cheers..........JJ