MY Roller Coaster... I think I'm in a Regression Help!!!
I really started my Journey at 18, I just turned 30. My name is Harmony I know... I joke though if you knew me... I totally think I should have been named Chaos!!! I have Harmony Love = Beautiful Disaster tattooed on my back!!! And thats How I look at my self. Beause I am Beautiful But my budy is a fracking Disaster!!!
So I was always getting injured as a kid and my back hurt. But at 18 I had a work Injury I fell Hurt my R wrist, my low back and my R foot. I was DX RSD, L4 L5 S1 disc issues and R wist issued... and soon after tested for everything and labled Fibro. In 2004 While working as an Air Traffic Controller in Miami I fell down the stairs and Injured My Low back and My Cervical Spine. I used a cane and had trouble walking. I had Herniaded Discs L3L4, L4L5,L5S1,C5C6,C6C7. I fought to stay for a year. In late 2008 I started to see significant changes I had extreme vertigo, horrible Migraines multiple times worse than usual. I could hardly walk. I lost most use of my arms they were numb. I couldn't hold anything, muchless lift my arms above my head and wash or do my hair. In Jan and July 2009 I had MRIs showing worsing, but it picked up an cyrvical syrinx.
I have a 5,3 and 1yo. I raised my 1st 2 at home with little problem. When My 1yo was born April 2010 I was unable to care for her or the older two after June 2010. I wasn't able to hold my 2mo daughter. I fell with her. My shoulder completely locked up like a vice one morning and I had tears doen my face but I couldn't get reliefe because baby came first!
Most recently: I have been having partial facial numbness, almost like Parkingson type shaking in my R hand which comes and goes. Possible vertigo my body feels like I can't hold it up and I go to the floor.both hands went numb at same time but painfull allmost the sensation when your foot 'wakes" up. This Horrible Throat clossing/ can't breath thing where I gag and my eyes bug out and I cough until I can pass air though my throat again! Horrible Gaps in memory where even in the same conversation I forget what were talking about! I slur my speech and act drunk but I'm totally sober. I will have the word on the tip of my toung but stammed ans can only get the 1st letter out over and over. Horrible Fatigue, sleeping in the middle of the day, a four hr nap at3 or 4 in the afternoon...unheard of!!!
I'm supposed to have a Brian MRI and Lumbar MRI to look at tethered cord and a form of spina bifita that causes the syrinx and a Spinal tap to rule out MS. Every Doc, my Neurosurgeon, 2 ER docs, and every other medical person I speek to says MS and I'm wondering how often do that many docs say MS and that many be wrong?
I also have severe anxity, mild OCD and I am Bi Polar...
The worst thing I am struggling with other that the DX is the loss of control over my body... It used to be that I could make up my mind, take a pill, eat something, or have a big drink and I could push my self to do more,,, Now my mind has no control over the physical other that to keep me calm and to get me through!!! I need so thoughts and prayers... and possibly Good correct but timly dx neuros in the SFL area!!!
I just realized that my 2008 symptoms were prsenting themselves, and these symptoms are a regression they are new and so much worse!!!! I am so scared, I was in the ER two days in a row and was treated like a psycho with absolutly no respect the nurses were horrible the first day, so nasty I couldn't get my arms to work and get the gown on and I called for help multiple times... while waiting my eyes crossed and I looked down at the bed and fell face forward. When the nurces came in once came in and actually sneered "I saw her when she came in... she's just having a panic attack just get her into bed!" I was sent home DX shortness of breath... they wouldn't even stop to listen or look at the other stuff going on...
Next day similar but they did do a Head CT...normal, sent me hom DX Weakness and Fatigue and get a MS workup. I couldn't even write on here because it is taxing at times and we're moving!!! I'm starting to be able to feel my Episodes coming on. I go in a cyclatory mannor!
Well, sure it is anxiety. You're young and a woman...Couldn't possibly be a thing wrong with you, ya know.
I am guessing you mean a few doctors have thought this was MS but didn't test? Have you had a good neuro exam? Do you know exactly what a good neuro exam should consist of? I didn't. It is why I sat with an idiot neuro for three and a half years. If you are not sure just google neuro exam and read up on them.
I wouldn't let any doctor explain away my physical symptoms without at least testing and a good exam. I wish you the best. Some on this board have had to visit eight or more neuro's before being dx. I hope you don't end up being one of them.
I have been told by at about 5 or 6 but the one I trust the most was my neurosurgeon. He was amazing, He ordered the MRI and LP. But he isn't a neuro and he is part of a group the group all agreed with his findings but I was stalled by my insurance and also with moving. So basically the tests are ordered but I need the proper dr to take over.
Hi Harmony. I couldn't help smiling that you have chosen a name of the forum that could not be moro the different to your real name. Anyhow I just wanted to welcome you to the forum.
You have certainly had you fair share of problems over the years and it sounds as if your back has ongoing problems that must make even the simplest of tasks like picking your small chldren up both painful and at times impossible. I am wondering if you have any family support and a partner to help you as you did not mention this?
I think that it sound as if you have faith in your neuro surgeon and although 5-6 doctors have indicated that they think you have MS, it is quite unusual for a doctor to state this without having done further testing. MS is an illness of exclusion and I am glad that you have an MRI (hopefullly of brain and spine) and lumbar puncture in the pipeline, but this needs to be done sooner rather than later to give you some clarity and answers. You also would need a complete set of blood tests done to rule out other conditions that mimic MS. My only comment is that with all that has happened in your back, I would try and keep an open mind about what is going on in your body and I pray for you that it is not MS.
Keep us posted how you get on and if you have any other questions then you will find many people who are willing to answer and offer support on this forum and the health pages above are full of really excellent information so check them out also.
I'm going to focus on the difficulty you are going to have with neurologist BECAUSE you already have their favourite fall back dx, mental health issue!
"I also have severe anxiety, mild OCD and I am Bi Polar" which gives you the top 3, none btw makes anyone immune to neurological conditions or any other condition but getting the medical world to see these issues when you have a great big red flag waving around in their faces, is going to be difficult, difficult but not impossible.
The way I would go about it would be to first enlist the help of your mental health specialist, preferably the one who dx your mental health issues or at the least the one mental health specialist who knows you best. Be brave and upfront about you having difficulty getting taken seriously when you need medical help for your coexisting physical dx conditions. He/she may suggest doing testing to see if you have health anxiety or a condition called conversion disorder, dont get upset if any of these are suggested, they need to be ruled out because of your already established mental health issues.
The point is to have a clear distinction between what is mental health and what isn't, its in your best interest and it can only help. Some of your resent sx maybe connected to the anxiety dx or medications but still he/she will probably discuss this with you and or discuss if there is a need for any testing. Mental health is classed as a possible MS mimic so i'm sure you'll understand why you'll need this.
Secondly, look through your medical file and write down all your dx conditions and date of dx, any evidence of deterioration etc you need to document your clinical picture. If you dont have reports from some of the specialists you've seen then moving out of state is a pretty good reason to request copies for your records. It think you'll find that a lot of your accumulating physical problems could be directly related to your dual spinal injuries and cyrvical syrinx. I'm sure 3 pregnancy's could of affected you in ways it wouldn't usually, you need to know if anything has changed since carrying your last child, have you seen your specialist since you gave birth?
The resent issues could easily be a combination of preexisting physical and mental health eg the panic attack sx but again you need to know if it really is panic and not something else, your mental health specialist would be able to help you work this out, are you on any medications, resent changes or additional medications etc? Stress makes everything so so much worse and you may need some additional help getting through the move etc so its probably a good idea to run this by your mental health specialist to help you get through this the easiest way you can.
I think its very important for you to see your neurosurgeon re your spine issues and to see your mental health specialists re your mental health issues, i think you are going to need their help in getting a more proactive approach and support for your ongoing health issues.
The mental health rollar costar has not been fun... but I am finally on meds where my mental health is so much better. I have been on these same meds for a really long time. We have ruled out issues with meds, it's not panic but there is an emotional componate to it. I find that when I am emotionally stressed I will have worsened episodes.
I have had mental health issues for 18yrs I have only had neuro symptoms for a little over3.
I'm glad to have someone who understands what I'm going through. I don't want MS! But a part of me wants the DX so I can be put on something and have a plan and be doing something and just finally know!!! I was labled so many things in the beginning and then they stopped. I'm sick of people looking at me and thinking I'm looking for attention!!! I just want a little validation and vindication for what I feel in my own body!!! I am not crazy!!! Well I am... But I like me that way!!! LOL!!!
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