Any Autonomic Dysfunctions dx w/ your MS?

[tonyad]

     I was just wondering how many of you have also been dx with an
Autonomic Dysfunction (Dysautonomia)?  Also what it is you have been dx with.

Me;
1.  MS
2. NeuroCardioGenic Syncope (dx through TTT)

~Tonya

[tonyad]

  Hey there :)
    You state that you work w/ several EP docs and they would like to do some tests on you....how come you do not want any?  I am sure they are speaking of a TTT right?
i have had (2) TTT done and although they are NO Fun.....I am glad I did do them because at least now I have definite answers.

     Your b/p is good!  however my runs So Very LOW...

Example;  yesterday, had a hard time w/ it.....it was hanging in around 76/ 48   P=51
                got up to around 90 / 56   P= 58 - 60
                BUT...when I get up to do anything, I get an imidiate SPIKE in Pulse. It will  
                shoot up from 58 up to 130 -140... for a few then start to drop, hover around upper 70's - 80's then drop back down......It feels pretty crappy when i get the Tachycardia!  Then drops to almost like a Bradycardia.....

    If my blood pressure hangs out around upper 90's over 60's I feel not so bad because I have always had a low b/p but Lately it has been just about Bottomed out!

Take Care,
~Tonya

[Guitar_grrrl]

I am dx with MS, but not AD.  I'm kind of curious, though.  I have dealt with bouts of paroxysmal atrial tachycardia (PAT aka SVT) since I was 18.  I'm 51 now.  I work with a bunch of electrophysiololgists who would love to get their hands on me, except I've always been able to convert myself, either through a Val Salva manoever or carotid massage.  

Under lots of stress, I get ventricular bigeminy, and lately, I've had lots of that.  I keep my caffeine intake to 4x/wk, and I have a glass of wine with my dinner, but just one glass.

My blood pressure seems stable at about 116/60.

Oh, well, just throwing it out there.
Guitar_grrrl

[tonyad]

Dave,
  Hello, I do not think thqat we have met yet.
Yes, I am overly heat sensitive from both the MS and the NCS (Double whammy).
i am glad that the links I posted are consistant w/ what you have been reading.
Are you able to copy some of this info and take to your Neuro? Are you still being
worked up for MS?  I hope you stick around and even post some more.

Quix,
   Ditto on the Gastroparesis for me also (yes can be AD related)
And the Mottling can certainly be AD related (but you know that ;) )
Sorry to sound like a doe - doe head but is your Neuro in line w/
AD and MS or is he discounting your above signs?

~Tonya

[jensequitur]

Weeeeeelll....

I can't properly say that I was diagnosed with POTS, but I certainly have had it in the past.  I had about four months of extreme shortness of breath upon standing (or any kind of change in position from down to up.)  My heart would pound, and my neck would feel like it was full of blood.  I'd also get a pain around the neck area.  I would feel like I was about to pass out.  Unfortunately/fortunately the symptoms went away just as we were trying to figure out the cause.  

[Quixotic1]

Gastroparesis - intermittent (parasympathetic)

Mottling of right lower leg (sympathetic)

My neuro scoffed at the notion of RSD (with pain) in me.  The sympathetic bundle runs in a column in the spinal cord right up against the motor bundle and it makes sense that the sympathetic chain could be involved with activity - his words.

Quix

[Kingusc]

Hi,

I don't post much, but I did see your message today and wanted to tell you that I have been diagnosed with autonomic dysfunction.  I have not been diagnosed with MS, but it has not been ruled out either, and my current doctor believes either MS or central nervous system vasculitis.  

I have read several articles on the relationship between AD and MS, and they seem consistent with what I've seen summarized above.  I'm taking a number of medicines to address the symptoms of AD/MS/CNSV, etc. but have no treatment currently.  I take Lyrica and Tegeretol.  The Tegeretol has helped with some of the burning (particularly in my face) more so than the Lyrica.  

I'd imagine you are very, very sensitive to temperature.  I wish you the best of luck, Tonya.  If you have any questions for me (knowing that I may be not exactly on point), I'd be happy to do my best.  

Good luck!
Dave

[tonyad]

  Thanks for the responses.....Now I am not so lonlely :0

Here is one of the articles...
content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFull

Here is another:  this one is pretty good..A bit easier of a read
thjuland.tripod.com/ans-2g.html

www.answers.com/topic/autonomic-dysfunction

REN:  A TTT is a firm gives a firm clinch on a dx of AD.....Not a fun test for sure, but a good one to help label which type you have.
I hope that some of these articles will be of help to you.  I mean they are CLEAR CUT...No guess work..It is what it is and much research has been done on the correlation between MS and AD

     Let us know how it goes when you see him next.
~Tonya

[rendean]

Hi,
I am interested in where you found this article. I just had this conversation with my cardiologist last week. He said he hasn't seen it in his practice with the few MSers he treats but does not see why it cannot be the same in MS.

Autonomic dysfunction has been considered early on due to several of my symptoms but TTT was not done since other testing proved negative (bedside BP readings while inpatient , etc with cardiologist there. I would like to show him this article. He is very approachable and he even told me he would research this before my next visit.

I do have arrhythmias as captured on Holter monitor and severely labile hypertension among other symptoms. My guess is I, too, have AD.

Thanks and best wishes on the AD and it's aggravating symptoms,
Ren

[ack65]

Hi Tonya,

I also didn't respond as I am not diagnosed but I have been researching AD as I have several of those symptoms.  I have benign heart arrythmia, breathing issues (struggling for air or chest pressure) IBS, raynards (i get the mottled purple skin and fingers), high & low BP (with occasional fainting in my twenties).  The erratic heart rhythm was investigated by a cardiologist but they found no cause - much like all my other symptoms.  I will be curious too see how others respond.
Anna

[twopack]

I don't have any specific autonomic diagnoses but I most definitely have symptoms.  I've battled GERD, IBS, and a reactive type of hypoglycemia for many years.  When I was first tested for MS, several doctors made note of the mottled purple coloration that would come and go on my legs.  They mentioned that being an autonomic response.

Last August a walk with the dog on a hot afternoon triggered an episode of low BP and pulse followed by urinary incontinence.  I felt uneasy (for lack of a better word) but never came close to fainting.  I suppose that was a vasovagel reflex.  It's what sparked the return to the investigation for MS evidence by my PCP.

Most recently I've had a lot of chest pressure, air hunger and erratic changes in the electrical rhythm of my heart.  The doctors offer no explanation for why but pooh-pooh my suggestion that it could be vagus or MS related.

Lulu went to a MS event recently where she could ask or submit questions.  I believe she asked about the autonomic nervous system / MS connection but I haven't seen any response yet.  I'm not sure I understand the big mystery.  It's the CNS, right?

I'm so tired of looking for causes and reasons and examining every aspect of my life.  I'd like to stop treating every aspect of my life and simply live life for a change.  Sorry, I deteriorate when I start thinking about all this.  It's why I didn't respond initially.  I'm not coping well lately and would like to wallow in denial I guess.

Mary

[supermum_ms]

Hey Tonya,

I havent responded (not dx) but i'm interested because i know i've got autonomatic dysfunction happening and we've had a few posts regarding this issue, its also one of the Q's we put through to lulu's neuro convension, still awaiting responses though. I think one of the problems is the recognition of autonomic dysfunction, MSers not necessarily dx with it but do have many sx and meds to combat the individual problems. I wonder if a poll using the sx of autonomatic dysfunction would help?

Cheers.....JJ

[tonyad]

  "Bumping" this for me.

I would think that is weird that I was the ONLY one who was officially
dx w/ an Autonomic Dysfunction....... Here is one of the articles I have found.
I wonder If I should be concerened about progression and disability??

   BACKROUND: Autonomic dysfunction is frequently observed in patients with multiple sclerosis (MS) but the evolution over time and the relationship to clinical characteristics are not yet established.

   CONCLUSION: Parasympathetic dysfunction was "closely related to the progression of disability in patients with MS". In contrast, sympathetic dysfunction was associated to the clinical activity of MS. This is in line with previous observations suggesting that the autonomic nervous system may be intimately linked with the disordered immune regulation in MS.


    To conclude, parasympathetic and sympathetic autonomic dysfunction could be easily overlooked by sole EDSS follow-up, therefore autonomic testing seems necessary to detect eventual subclinical changes in MS and should be taken into consideration in outcome measures in clinical trials. More over, follow-up studies based on such data are needed to clearly demonstrate the progression of autonomic dysfunction over years and their correlation other disease-related parameters.

~Tonya