Limb Numbness

[basskd]

I was diagnosed with IST this past August 2009, after having episodes of elevated heart rate and blood pressure for extended periods of time.  Since then I have been running Track for college and When I do workouts my legs have tingling/numbing and sometimes my arms too. Also, during races, While I am sprinting my legs gradually feel numb and I do not stop running but I am unable to speed up like I have done so many times.  I am in the best shape I have ever been in, even with the hardships of intense exercise with IST, and I know that I shouldnt get this feeling.  I am wondering if the cause might be the IST since I have only had these problems since June 2009.  Right now I am taking Metaprolol extended release to help with the symptoms of IST.

[Heiferly]

Well, you'll be in good hands.  Vanderbilt is world-renowned and they get the government grants here in the US to do lots of dysautonomia research, so there are often opportunities to participate in clinical trials if any of that interests you at all.  You can find their website linked here if you haven't already checked it out:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

Here's the government site where you can look for clinical trials, in case you're interested:

http://clinicaltrials.gov/ct2/results?term=Dysautonomia&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=NA%3AUS%3ATN&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

If you want to know more about the types of testing to expect and what that may be like, let us know.  I think there may be a couple threads lurking around here that discuss comprehensive testing at the major dysauto clinics that would give you a general idea, though they may not be specific to Vandy (we've had more patients go to Cleveland Clinic and Mayo here on the forum, if I recall correctly).

[LivingInHope]

Let us know how you come out?  Metoprolol can cause cold or numb hands or feet as a side effect- did your numbness start prior to starting that medication?

[tonyad]

   A TTT you would remember..Lol
   You are layed on on a bed /table w/ B/P cuff and heart monitor strips attached to you.
The dr gets you baseline rates while laying supine for around 5 - 10 min then the table is tilted to about an 80 degree angle and immediatley pressures and rates are then taken from there on out until test is complete.

    Sometimes they will give you some meds in IV to speed up heart rate or nitro under tongue to stimulate a Dehydration type response.(happened to me).  they actually want to see the end result of syncope....Not Fun!!!!

      Wish you luck......
~Tonya

[basskd]

I dont think I had the TTT, but im not sure, I went throuh so many tests to rule out everything that I lost track of them.  I am going to The autonomic clinic in Vanderbuilt, actually my neurologist referred me to there.

[Heiferly]

Where are you going for the autonomic doc?  Did you get in to the autonomic clinic at Vanderbilt or is there another autonomic doctor your cardiologist referred you to?  June really isn't too far out for an appointment ... autonomic specialists are hard to come by so they can often be booked out for months at a time.  I hope your appointment there goes well and that you get answers that are helpful in improving your treatment and alleviating your symptoms!

[tonyad]

  An Electrophysiologist is the diagnostic doc for these Dysfunctions.
What kind of doc dx you??  Did you have the TTT done  to dx you?

~Tonya

[basskd]

I have had a halter monitor for 24 hours though it wasnt during a race. I am following your advice and going to the autonomic doctor in June, its the closet date I could get.  I went to a cardiologist earlier this year and he is the one who decided I had IST.  Never been to an autonomic doctor so I hope this works out.  Thanks for the responses

[tonyad]

   Hi there!  Welcome to the Forum :)
I would think that the tingling and numbness is due to the lack of oxygen and blood flow.
This numbness and tingling is only happen when you really exert (sp) yourself?

     I was dx w/ IST.......then was re-dx w/ NCS...which is much more appropriate for my sx..The IST was not..
You may want to go to the Dinet.org website for some more detailed info.

     My girls run also ...Track, Cross Country, and did their first Tri-athalon last year (2009)...You are awesome!  Don't ler this disease control you!  but check w/ doc (Cardiologist) and give them a brief run down......I can suggest to you..You really need to Up, Up, Up, your fluid intake and Gatorade a couple times a day, as well as increase your sale intake....

Keep us updated....
~Tonya

    

[Heiferly]

I would recommend discussing these symptoms with your cardiologist.  They may give you a referral to a vascular specialist for a consult there, or do some testing whilst you exercise on a treadmill at the hospital, reproducing the symptoms during the testing so they can get a better look at what your body is doing while these symptoms are occurring.  A metabolic stress test on a treadmill might be enlightening, or they might even be able to do some vascular testing in conjunction with treadmill stress testing if they're suspicious of there being some vascular abnormality involvement.  Most likely your cardiologist will be able to assess what type of testing will be most useful.  They may also have you do holter monitoring while running a race to trigger the symptoms to try to elucidate the underlying medical issue that way, though I would think much more information could be gathered with the testing I described first.  

Occasionally, other forms of dysautonomia are initially mistaken to be IST, so one thing to keep on the back burner is the consideration that new symptoms present the slight possibility that IST isn't the proper diagnosis.  Hopefully your doctors will keep an ever-present open mind in the event that they need to perform more tests to confirm your diagnosis or tweak your diagnosis to reflect newly available information as other symptoms present.  If further testing is ambiguous as to what is causing the numbness/tingling or doesn't seem to "jive" with the IST, you may want to pursue more autonomic testing to firm-up your dysautonomia diagnosis just to be sure you aren't missing anything there.