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WinterSown

My left side now goes numb. Grrrrr.

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I can't stand this, I'm walking along, doing nothing too active, or too slow, and then I feel my left leg go numb from my butt down, and then the rest of my left side follows along soon after. I can't put my weight on my left leg or my leg buckles--no feeling at all--like it's missing. Arrrggh. In thirty minutes or so I am back to normal like nothing had ever happened. I've had numbness and paresthesia for a while and they're treating it but not this bad. If it increases in frequency I'll call one of my doctors--cardiologist, EP or neuro, which one, which one--ehhh, I'll figure it out. 

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Could that maybe be a pinch in a nerve? I recommend a chiropractor as well. I have the issue where I lay on my left side and my right hand will go to sleep. No idea why. Maybe just one of those things. How often does it happen?

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@WinterSown I have chronic issues with sacral pain and numbness/pain both buttocks and thighs. MRI showed arthritis. I also lost the curve in my lower back, it's straight as an iron rod. PT can work for these issues. If you loose strength though than I would definitely recommend a visit with your doc of choice, there may be something else than arthritis going on. Best wishes!!!

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I do see a DPT twice a week, one of my scripts is for cervical radiculopathy. Half my head going numb is new though. It's always something.

 

 

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5 minutes ago, MomtoGiuliana said:

So sorry.  Hope you can reach a doctor for advice on whether this should be seen urgently.

I am thinking of calling tomorrow. 

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1 hour ago, WinterSown said:

I am thinking of calling tomorrow. 

I would. At the very least the phone call can help alleviate the stress of another weird thing our bodies decide to do. Better safe than sorry. 

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 I scheduled with my EP, I'll see him on Friday. He handles my 'wonkies', lol. I appreciate everyone's well wishes. It's been about 18 months since my diagnosis and I've learned to better roll with the punches; I'll never be complacent about any of it but I do react better than a year ago.  It will be what it will be.

 

 

 

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One thing I have learned since getting serious symptoms from POTS: any chronic illness will make us more aware of changes in our bodies. They may just be regular age-related changes or they could be serious problems - but we always seem to notice even the slightest change. I think it is because we have experienced that even small things can turn into a flare with dysautonomia. That is actually a good thing: in my case I am at my PCP as soon as I get the sniffles or anything that could cause me to go into full-fledged POTS action. I think that is called being pro-active? --- Wishing you the Best!!!!!

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Life still goes on. I went to PT today and the doctor got out the slide board (horrors!)...it's like speed skating but you only go side to side and not forwards. I started dripping sweat after the first minute. My legs have lots and lots of feeling now--ow ow ow. I've been drinking water, munching on salted pistachios and berries for electrolytes. Some aspirins and maybe a week's soak in some epsom salts will help too. 

 

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I just got back from my EP, I think the world of him. I nearly fainted and fell off his table which upset the nurse--'I'm okay, I'm okay--I do this all the time.' Had a normal EKG but my BP was low again. The doctor couldn't hear it, sigh.  No more lisinipril for now and if I'm not better to call him Monday and 'We'll figure it out where to go from here." More sighing.  I told him I want a coffee and he said chicken soup, lol. I love him 😉

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@WinterSown - that is exactly what happens to me when I pass out in my docs office. And always I am saying: I'm OK! It happens all the time!" because the nurses always get so upset. I already passed out in my autonomic specialists office as well as at least 10 times in my PCP's office and once at my cardiologist. ( I am not even telling you about the times at xray, MRI, OR, ER …. and always the same response when I wake up : "I'm OK- did I scare you?" It's automatic! … I hope they can get you back to your usual soon - best wishes!!!

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When I am in flare, (as I am now), I always experience one sided numbness. Always the left side, and to varying degrees. Sometimes it's my whole side (from muffled hearing and numb mouth all the way down to my leg) sometimes just my arm, other times my two smallest fingers, or sometimes just patches on my back and the back of my calf. I find that this totally disappears when I start feeling better. I can have years of not feeling it at all.

I mentioned it to a cardio once, who was quite alarmed and sent me to see a very good MS specialist. He was able to exclude MS due to a lack of other 'typical' MS symptoms.

If I am in a flare, I usually experience this numbness after being upright and walking around for too long, in the shower (always), when I am concentrating (especially if I am talking to someone) and within a few minutes of starting a meal.

For some reason, it seems to be one of my most bothersome symptoms this time round.

I hope you can get your numbness sorted and managed as quickly as you can...it's hard enough dealing with all the other POTS symptoms!

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On 9/16/2018 at 5:57 AM, bizbiz said:

When I am in flare, (as I am now), I always experience one sided numbness. Always the left side, and to varying degrees. Sometimes it's my whole side (from muffled hearing and numb mouth all the way down to my leg) sometimes just my arm, other times my two smallest fingers, or sometimes just patches on my back and the back of my calf. I find that this totally disappears when I start feeling better. I can have years of not feeling it at all.

I mentioned it to a cardio once, who was quite alarmed and sent me to see a very good MS specialist. He was able to exclude MS due to a lack of other 'typical' MS symptoms.

If I am in a flare, I usually experience this numbness after being upright and walking around for too long, in the shower (always), when I am concentrating (especially if I am talking to someone) and within a few minutes of starting a meal.

For some reason, it seems to be one of my most bothersome symptoms this time round.

I hope you can get your numbness sorted and managed as quickly as you can...it's hard enough dealing with all the other POTS symptoms!

Cooking dinner is one of the hardest things I can do, I always get wonky. And I have to wash the dishes afterwards in the sink too 😞 I hate this numbness, it kept going on and off all weekend and I can't feel the front half of my legs right now. I walk like a human marionette, sigh. I just left a message for the EP. I have no idea yet which way this will go. Crossing fingers, ankles, knees, arms knotted in a twist--I lam a pretzel stick, lol.

 

 

 

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Sorry @WinterSown - this sounds miserable. But it appears more of a neurological problem the way you describe it - not sure if the EP can help? I am wondering if you should not check with your neuro rather than EP? 

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3 hours ago, Pistol said:

Sorry @WinterSown - this sounds miserable. But it appears more of a neurological problem the way you describe it - not sure if the EP can help? I am wondering if you should not check with your neuro rather than EP? 

My cardiologist, EP and neuro are all part of the same hospital group and work off of the same electronic record, the gastro and ENT also have access. All the diagnosis and treatment are there on one record and no one denies my dysautonomia as they all helped make the diagnosis. (win!) The cardiologist holds the reins, the EP rides shotgun and the neuro helps me remember the trip. The EP has been adjusting my drugs down since I met him; I see him every six weeks to three months--he is Dr TTT.  They are my team. I've already had two callbacks and expect another later or tomorrow AM. 

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I have neuropathy all over and I also get a tingling and then numbness on my left side. It feels weird. I have mentioned it to doctors over in the UK but no one seems interested. It happens to me when I am sitting or lying down. I have no idea what causes it. 

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On 9/17/2018 at 3:59 PM, TCP said:

I have neuropathy all over and I also get a tingling and then numbness on my left side. It feels weird. I have mentioned it to doctors over in the UK but no one seems interested. It happens to me when I am sitting or lying down. I have no idea what causes it. 

The neuro tested me last year for the neuropathy. One of the tests was a doppler of my neck which found I have radiculopathy. I was prescribed PT and it has helped a lot with range of movement and pain reduction caused by pinched nerves but it has not done thing one for the dysautonomia symptoms. Along with the numbness I also get weird paresthesia sensations just outside my body--sometimes like that stinging effervescence when you pour out a cold can of soda over ice. I've been reminded I can take my low dose 2mg valium when it's driving me nuts--it is a muscle relaxant and at 2mg doesn't knock me out immediately, sometimes I bite the pill in half and just that amount has helped to tone it down. I hope you can get your tingling figured out--it is very annoying. Be well.

***

Update: Cutting the Carvedilol down to 6.25mg twice a day has done a LOT to cut through brain fog. I've gone from pea soup to mist. The other woozy/fainty and numby/tingly symptoms are still there but the improved clarity is wonderful. I called in my update to the doctor's office this afternoon; five minutes later I got a call back from his PA to please come in Wednesday morning. Ugh. I'm delighted to get good care but I don't know where this is headed. And orders for now: More salt and water.  Fine! I'll go to Jones Beach with a bendy straw and start slurping it up.

 

 

 

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I just got back from the EP. My numbers are still wonky and I'm still going numb even though we've cut many drugs and I've made an effort to stay salty and hydrated. We had a good laugh with my cuff which he tested on both my arms--we had trouble getting a reading, finding anywhere we could get a measurement. I told the doctor to try it on himself and immediately he got a read, as did my husband who was also there. Put the cuff back on me and it's a struggle for all of us to find a position to get a read. Sigh. I bought a new one on the way home. 

I am having a mega-flare. We couldn't' think of anything that recently happened that would trigger an uptick in level and frequency of symptoms. No changes in any drugs or management today but he did mention IVIG, but right after that he said he thinks it's dubious and questionable as to its results. I will see him again in another month and hopefully my symptoms will have rattled down. 

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Has your EP considered talking to your neurologist now that he’s ruled a few things out? Is this related more to the radiculopathy you were diagnosed with rather than dysautonomia? I have nerve pain from CIDP, I know how painful nerve issues can be and hate to see you suffer. Your neurologist might be able to rule out a few things or find the cause. I’m also on ivig, it treats my CIDP but does nothing for my pots. It may or may not help nerve issues or pots, I think it depends more on the cause. 

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@Clb75 My cardiologist, EP and neuro are all part of the same cardio-vascular unit and have equal access to my electronic records, as well as get alerts when they are changed. The neuro probably read my chart before I got home. The EP doesn't think it's related to the radiculopathy which is part of my program at PT. I do have more range of motion and less neck pain but no relief from the dysautonomia symptoms. All my doctors are on the same page to reduce my symptoms and their effect on my life--that's pretty much my management plan.  I go back to him in a month, and I see the neuro a few weeks after that but he reassured me to call if I need and he will see me ASAP. That's probably the best takeaway--that they will be there for me when I need them. If only there was a pocket-size cardiologist I could take with me all day long....

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@WinterSown- I am not sure what your symptoms are when you are in a flare but I know that often when I become extremely symptomatic it is often days - or even weeks - before the reason for the flare reveals itself. For example: recently I had a flare that landed me in the hospital and only a few days after my discharge did I develop a GI illness. Also - sometimes I become very ill with POTS symptoms and I realize later that in that period there was a low pressure weather pattern. Also - stress causes it, even when I am not aware that I am stressed. Sometimes I find out that a family member gets sick and I might have been fighting that illness. It is usually that the dysautonomia shows itself BEFORE I find out that something is wrong. My docs know to check me from head-to-toe when I become symptomatic (and it sounds like so do yours - we are the exception!!!) Sorry that you are not feeling well after such a long good spell. 

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@Pistol Thank you for being so caring, everyone too. I was stable for a long while so we did talk about probable cause and right now we can't think of anything out of the ordinary a few weeks back--nothing rings a bell.  We're going to take a week next month for a small vacation--the EP thought it was a good idea to get away. I need a brain break. One of my other doctors gave me good advice a long time ago, I think it was Dr Howzyerbutt. He said you can do everything 100% right, even 110% right and things can still go wrong. I'm not ripping my hair out about cause, instead I'm going to concentrate on reducing the flare's effect on my life. This afternoon I made cheesecake! I'm waiting for it to cool so I can glob a slice down with a mug of coffee--comfort food tonight, and I have a bag of Swizzlers too. I've been playing with my new Omron--a new broom is supposed to sweep clean--I'm not getting any better numbers, harummmph!

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