have you experienced new symptoms?

[mamiJ]

Hi everyone.
I am a 38 year old female, who was dx with dysautonomia back in 1995.

I had a GREAT dr at that time. He was a cardiologist, but he was one of the top dysauto dr's around, but sadly (for me) he retired.

since then, I have not been able to find a dr that knows anything about or seems to care about dysautonomia.

I was in a car accident in 2002 and was shortly after dx with fibro and myoofascial pain sydrome.

So, I have been living with all these pains and weird feelings for years now and have learned how to "deal with it"

About two years ago, I started to feel a weird buzzing feeling in one spot on the upper left corner of my back.

I asked all kinds or drs about it because it was very irritating and they all said they had no idea and blew me off like I was crazy.

In November of last year, I started to get pins and needles/tingling or buzzing feeling at random times but at different locations of my body.

In March of this year, I started to get cluster headaches and was put on verapamil.  I went to a neuro and when I told him I had dysautonomia he actually said "what is that?"

In June, I had the strangest thing happen.  Out of the blue, I felt a wave of fatigue and I could not move my arms, legs or hands and I had intense pressure/tightness in my chest and back.

I thought it was usual dysauto chest pressure, even though it had been a long time since I had it, but it lasted for two days, so I got a little scared and went to the ER.

They ran a cardio workup and x rays and said I had inflammation in my chest wall.

ever since then, I have been a mess.  I gave off and on leg weakness so bad that at times I can barely walk. I have tremors in my arms and hands and fatigue worse than I have ever had since being dx in 1995. I take nuvigil and doesnt even help the fatigue

I have problems holding things and have dropped things and fell down the stairs at home, but I have no idea why.

this week, I started to have problems with incontinence....never have before

and yesterday, I developed a huge lump in my throat feeling like my whole throat is closing up, but I can swallow.

I have been tested for lymes/vitamin deficiency and ck12 and all were normal.

I went to a new neuro because he was listed on a dysuto site and even when I ask him about this being from the dysuto...he blew me off and said "you have fibro" I told him "I have had fibro for almost 10 years now"  he didnt change his mind

My PCP says no way its from the fibro..it is something neurological...MS is lurking in the darkness

so, what I am trying to figure out is could all of these new symptoms be from the dysautnomia?  

Has anyone else developed a bunch of new strange symptoms seemingly "out of the blue?"

Thanks for reading!

[Heiferly]

When you started having these new symptoms, did the neuro docs run new batteries of tests such as EMG/nerve conduction studies?  One thing I thought of that you didn't mention them ruling out is myasthenia gravis; although what you're describing isn't exactly typical for MG, I would want to have it ruled out because there are cases of atypical presentations (e.g., where ptosis isn't the initial presentation).  

Generally speaking, I would be asking for a thorough neuro workup, even repeating tests you may have had in the past before these new symptoms started.  In light of these new symptoms, you may very well have something different show up on tests that never showed up before.  Is there a major teaching hospital near you?  That would likely be your best bet for getting worked up for any/everything possible, as they may need to hand you off to various neuro sub-specialists within the department as they narrow down the possibilities, rather than having one neurologist stick with you.  Neurology is such a vast field that you may have better luck with a large department where the individual docs are sub-specialized in different aspects of the field.  If you need help finding the best hospital in your area, let me/us know where you are and I can try to help pinpoint something for you.  (If you want to be more private, you can send your city just to me over private message by hovering over my username, heiferly, in blue at the top of this message and clicking "send message" in the dropdown menu that appears.)

-Heiferly

[tonyad]

    Good for you learning as much as you can on different conditions.
Yep, Knowledge (sp) is "Power".

Take Care,
~Tonya

[mamiJ]

thanks Tonya!

I agree with you 100% on the fibro thing..I have been saying that for years.

I am on the MS forum and in the limboland group also...I figure there is no such thing as too much information when you are trying to figure out why you are falling apart.  :)

[tonyad]

    Hello :)  i have many sx but I have both AD and MS!  Sounds like to me you
should hand your current Neuro his "Walking Papers" and move to another!
I think Fibro is a big "Catch all" for many doctors to hand to their patients who do not want to take the time to listen and investigate the real problem.

   Actually, from what I have read AND from what My Rheumy says....Fibro is usually Secondary to something else!  of course I am No doctor nor do I play one on TV but what I am saying is that......You are your own best advocate! You know what is normal for you and what is not!

    I hope you can find some answers soon......Have I seen you on the MS Forum?
Have a great week,
~Tonya