Lindz Posted January 22, 2016 Report Share Posted January 22, 2016 Hi everyone, I posted here a few times in the past few months. I had autonomic symptoms start out of the blue about 2.5 years ago. None of them were debilitating. However, at the same time I developed a stiff neck and what I thought were cranial neuralgias. Now I know from a new neurologist taking a look at my case that what I was experiencing was actually dystonia. Dystonia is a stiff cramping or involuntary pulling. Originally in my neck, then in my throat and oral cavity. Its called oromandibular dystonia. I wasn't too worried until recently, when I developed urinary urgency. I know a lot of you have it, but you don't also have the dystonia. At least I haven't read too many stories with that here. So now there is concern I have MSA. Because this type of dystonia is a "red flag" for MSA. And now I have the main autonomic symptom - which is urogenital. The other is OH- I don't have that .... yet. So now its like waiting for the other shoe to drop with the OH. Dystonia is also a first symptom of parkinson so, Im waiting for the parkinson symptoms to show up (in MSA you need the parkinson symptoms as well). Its horrendous. I cry every day. I tell you EVERYTHING else has been excluded. I have been worked up for 2.5 years. I know a lot of you probably don't know a lot about MSA but its terminal. Its the combination of motor and now autonomic symptoms which is the problem. It not just purely autonomic. I wish it were. I see a movement disorder specialist in mid February. I am 47 so in range for it. I also have three children two of whom are 5 and 7. I can't believe I might not be here to see them grow up. Im so scared. If you are a the praying type, can you throw one up there for me. I dont have a good feeling about this. Quote Link to comment Share on other sites More sharing options...
lewis Posted January 22, 2016 Report Share Posted January 22, 2016 You sure the urgency isn't due to some sort of infection? Reading stories like this just makes me sick. I don't pray but your story inspires me to enjoy my life while I have what's left of it. I hope the best for you. Quote Link to comment Share on other sites More sharing options...
Lindz Posted January 22, 2016 Author Report Share Posted January 22, 2016 Lewis. Thank you. Imagine my horror. 2.5 yrs of trying to find out whats wrong with me and to have this diagnosis as the last man standing. Ive been labeled psychosomatic, my family stopped believing in me, the money on testing, etc. Its horrendous. Really, don't want to get on my soapbox, but I would KILL for a normal day of laundry, kids baths, etc without this hanging over my head. Yes, enjoy every day. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 22, 2016 Report Share Posted January 22, 2016 Hi, Lindz. I don't know that I have any words of wisdom for you but know that we are here for you any time you need support. Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted January 23, 2016 Report Share Posted January 23, 2016 Dear Lindz,We've talked before here, and I'll say again to you to please try and take one thing at a time....If you read my thread ("old person with POTS etc."), you can see my diagnosis is coming in....maddeningly slowly... yet "serious" to quote the new cardiologist...but I'm doing my best to deal with it. I've also been symptomatic for over two years. All my symptoms rolled in with depression and anxiety.....which are steadily getting much better now, as my dysautonomic symptoms worsen....but I am far more able to cope than I was even a few months ago. Remember, your feelings can pass...It seems you need calmness now. You have this forum and all our cumulative knowledge about anxiety, uncertainty, and fear...So please breathe...no kidding...it helps. Try your best to take your mind off unknowns...Sylvie Quote Link to comment Share on other sites More sharing options...
valiz Posted January 23, 2016 Report Share Posted January 23, 2016 You have an appt for a movement specialist in Feb so until then I would try to stay positive and try to stay calm. I know it is easier said then done. I am a person with strong faith and I will certainly pray for you. If you are like me though you do want to get MSA ruled in or out. For me I want to know what is going on whether it is good or not good. liz Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 23, 2016 Report Share Posted January 23, 2016 Hi, Lindz,I'm so sorry that you are going through a difficult time right now. Have you been to Mayo or heard of Dr. Thomas Chelimsky? I think he sees MSA patients in his clinical practice and is also a physician advocate for an MSA organization. Perhaps someone who has a great deal of experience in this area could be your next step? I'm sure this has to be so overwhelming for you and your family. Please know that we are here to listen and offer support, I'm glad that you've reached out to us! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 23, 2016 Report Share Posted January 23, 2016 I am sorry to hear what you are going through and the waiting game is never easy, every day seems never ending , I can only suggest to try and distract your self doing special things with your children. Sending positive vibes your way Quote Link to comment Share on other sites More sharing options...
Lindz Posted January 23, 2016 Author Report Share Posted January 23, 2016 Everyone thanks. Im on the east coast today enjoying a day with my family hunkered down with my family - in snowstorm Jonas. Sylvie, yes, you have talked me off the ledge before and I know you are going thru the diagnostic ringer as well. I appreciate it. Yes, I am seeing a movement disorder specialist. I was referred to a local clinic. I thought I was seeing the MSA guy, which I was excited about b/c he's supposed to be awesome, but found out Im seeing the Chief of the Movement Clinic. While he is not the "MSA guy", he is the chief and expert in Parkinsons and dystonia and with MSA being an atypical Parkinsons, he has got to be more than familiar with it for a start. I decided if there is a diagnosis or follow up, I will ask to see the MSA doctor and go to Mayo, Hopkins, Vanderbilt. I live in NJ. Thanks for the prayers and good vibes. Quote Link to comment Share on other sites More sharing options...
Nymph Posted January 24, 2016 Report Share Posted January 24, 2016 Dear Lindz,I am so sorry that you are going through this! I cannot imagine what it must be like. I will certainly pray for you - for there to be another answer, for you to be able to enjoy and live in the moment with your family and friends, and for you to have peace in the midst of uncertainty and distress. Also will pray for those around you to know how to best support you during this time.hugs,Nicole Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 24, 2016 Report Share Posted January 24, 2016 Happy that you are going to be able to see a specialist but praying for a different diagnosis. My son had a lot of strange symptoms in the beginning. In fact when he went to the hospital the first time, he had a stiff neck and his joints were stiff. He spent 10 days in the hospital and they ran any and every test available. However, the only thing that showed up positive was the tilt table test. I don't know anything about MSA but I will look it up. Rember to take one day at a time and take care of yourself. Praying for a different diagnosis and for your family. Quote Link to comment Share on other sites More sharing options...
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