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Undiagnosed but curious

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Undiagnosed but curious

Postby RitaLita » Fri May 13, 2016 4:01 am

Hi all my name is Rita,
I'm happily married with four beautiful children and I am 29 years old.
I have just completed my spring semester with As and Bs and am part time military. That means I'm in the national guard. It's a lot of fun even though some people think I'm crazy for thinking my job with the guard is an exciting way to spend a weekend. So anyway now I've shared some back info. Right now
I'm undiagnosed but I'm flip flopping from physiological to psychological as I've been told a couple things by a couple doctors.

So let me break down all of my symptoms and my history. When my (now husband then boyfriend) and I were dating everything was fine. After we got married we liked to go on hikes. On our first hike it was a warm summer evening. After the first mile I had to stop. I had an intense itching in my thighs. I was 21 years old. This was all new to me it wasn't like I wasn't used to walking or I was a slothful couch potato. I had a normal lifestyle prior and no weight issues and we weren't hiking through bushes or trees or vines. We were taking a trail in a local park. Well the itching was borderline burning but I never saw a doctor about it. I figured maybe it was sweat or a bug bite. A few weeks later we were walking on a board walk by a pretty river and taking pics and I started itching again. He said lets just go home and enjoy a quiet evening there.

Anyway soon I was pregnant and all the symptoms were gone. Itching, burning in my legs and occasional balance issues gone!

After my boy was born my itching, pins and needles and even weird numbness and itching in my torso came back. Still I'm one to avoid doctors and I wasn't about to go to a doctor for itching. God invented chamomile for a reason, I told myself.

Well the circulation issues worsened slowly over time. After my fourth I started having (embarrassing) loss of sex drive then with that came balance issues again. Like I said,
I'm not one to lament so I didn't call the doctor until the coordination issues, paresthesia, and numbness were all together all at once and causing me to fall. When the stuttering kicked in I called my husband. (I was just leaving class) my speech had stated slurred a few days before but was full on stuttering when i called for a ride. He said "that does it. You're having a stroke or something!"

After a cat scan of the head and a MRI of the head the neuro comes in and says "no disorder presents with stuttering and balance issues sooooo..."
And trailed off...then the house doctor comes in and suggests complex migraines. I said "well sure can I just get some pain relief and go home?" So he says he's not sure maybe I need to go to rehab.(physical therapy). I'm all about it. Whatever to stop the symptoms. So then another neuro comes in and says no it's conversion disorder. I google that and I start crying. How can I have a mental illness? I have never been raped, molested, kidnapped, witnessed a murder, been to war etc..
She says not to worry it doesn't reflect poorly on me. She was real nice and since I was crying she said "definitely conversion!"
I sobbed a bit more but after googling and finding out cd patients spend a lot of money and time in denial I asked "well let me see the psych on call so i can get some meds and go home"
She brings in the psych the next day. He gives me a full work up. Question after question. Distraction techniques, trying to make me think of a trauma I haven't overcome. Asked me to name off stressors. I admitted to being phobic around escalators. He said do I see them a lot. I say no of course not. I avoid my trigger. He says "nobody gets cd for being afraid of one trigger. This isn't cd. And you're very compliant. The neuro is passing the buck"

So after three weeks of symptoms and three nights in a hospital I was able to get some Tylenol and go to sleep. On the forth day I had little stuttering left and I could walk enough to get home...if
I wouldn't have passed the morning pt they were going to send me to rehab at a local physical therapy center. I walked good enough. I had to go home because I hate hospitals and missed my life. The symptoms seemed good. Then this past Saturday I was having a blast at a fun festival with my family. We were eating hot dogs, visiting with costumed super heroes, but it was warmer than normal. I felt my legs go numb then drag behind me. I said "well if it's cd f it. I'm not drawing attention to a symptom that exists because my mind is having a tantrum." My husband points it out and I'm like "nope. Ignore it." I continued to experience bilateral weakness but I stayed distracted.
Got home in the ac and the weakness was still somewhat there but it was less so? We went to a birthday party where there was body heat and it made my symptoms worse. In addition to paresthesia, bilateral muscle weakness and coordination troubles, itching In my trunk and random loss of feelings in random body parts I also have isolated sleep paralysis and intense cervical spine pain that hurts from the cervical spine to the area below my bra. Also when my legs are weak my muscles hurt in my calf and thighs.

So idk. The one neuro said she hasn't ruled out enough organic causes to actually call it cd but she is making it a place holder diagnosis while we wait...I don't see a neuro until September.

So I'm landing here since my place holder diagnosis is between migraines and cd. Will you guys have me?

I have no mental health history to discuss and no life altering traumas so I assume if it is cd I won't get therapy because there is legit nothing to talk about. are there other treatments when you don't have anything to talk about? I'm not one to pill seek. I always sign off on the doctors paper work that "no medication" thing.

But I want anything to make my body work again. A diagnosis of CD will get me tossed from the NG since I haven't gone to bct yet.
But I'm useless with these symptoms anyway
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Re: Undiagnosed but curious

Postby Theprinz993 » Sat Jul 09, 2016 5:06 am

I'm curious to know how long does your legs go out on you? And how often and what other symstoms do you have? I was diagnosed last December 2015 after three years of my legs giving out along with stuttering so bad in 2012 that I actually went to the doctor where he sent me to a speech therapist and said that at my age the insurance wouldn't pay since it wasn't at the level of horrible. But there would be somedays I couldn't even talk in a conversation because of it. But it gradually got better but still sometimes I can't say what I want to say. In the beginning my legs started giving out just maybe like 1 time every 3 months and it just lasted 3 min at the most and then it started to progress to once a month for 5 min and I would be so tired that I felt like I needed to be in a wheel chair and that's when I asked my doctor because a lot of symstoms went with MS. If my back pops a certain way it looks like someone is throwing a party in the sky by all the white spots dropping all around me. But in October 2016 I went to get out of the car and I was almost on the ground so my first response was well this will go away but my mom was like get back in the car we are going to the doctor there's something wrong and since iv had this symstoms before and they said just get neck therapy even though I didn't need it and no signs my neck had problems and the good one is "Lose weight". I may not be fit like a Olympian but I'm not a couch potato iv been the same weight for a very long time.I didn't see the point to go until after 1.5 hours later it was even worse and my knee caps were almost hitting the ground. I was in the Marching band for 4 years so I think after all those years of walking straight lines and all of sudden not being able to walk toe toe it's a sign that's there something wrong with me. But to get back on point lol. I ended up not being to walk for 1 month and resulted in 1 week in a hospital getting 3 spinal tapes,3 MRIs and all they would say was everything looks to be ok. Well I was like ok. So I leave the hospital and my mom still isn't for certain what's wrong with me so we go to anther Hospital and I send my files to them. The neorologist asks me to walk for her and my mother says have you saw this before and she says yes quit a few a few times so I'm like well maybe they will find what's wrong with so she says your spinal tap fluid was a tad off from normal so this was something new that the previous doctor didn't even tell me. So they order another spinal tap and with in 1 day and another MRI they say everything looks to be ok. Nothing more about the tad off spinal fluid from the previous so they discharge me at 1am and told me I had ataxia. Something I already knew. So my family doctor said well we have did tests and its time to quit looking and diagnose you with CD. And put me on anti depressants that didn't help expect take some of the pain in my legs away which I'm not the type of person to take medicine to ease pain. I haven't been to a therapist though because I know with all the family history of mental illness they would honestly just think I'm crazy lol but maybe I am who knows lol.

So fast forward to July I'm still losing my ability to walk every month for 2-4 days I never know when it will go away and it comes back every month which isn't normal for CD from what I read when it goes away it doesn't usually come back. I dropped out of college on a medical withdraw to see if the symstoms would go away since the disorder is caused by stress. And it hasn't. I'm quite the happy person so I don't see how if I have so much stress I'm not having the relapses during the most stressful times rather than on a perfect schedule. Even though I have no stress in my opinion.
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