zerohours000

5 minutes ago, blizzard2014 said:

The "old people back up and bow to me when they see me getting my 10 scripts filled at Wal-Mart!" My mountain of used pill bottles can fill an entire landfill all by themselves lol! sometimes humor is the best medicine, but it is easy to get lost in your disease and forget that the ultimate goal if to get better. Sometimes people aren't ready to hear the truth and get themselves up and exercising and moving in the right direction. They get stuck in a rut for many weeks, months, and sometimes even years. Then you have the big fights over those who use meds vs those who use diet and exercise. The anti pain med peeps bashing those who use pain meds for their chronic pain. Patients running wild on one another can become very unproductive. 

Spot on.  The worst, however, I feel, are the snake oil salespeople selling “cures” for things.  Like lupus.  There ain’t no cure for that.  Maybe in the future there will be but right now drinking green shakes isn’t the cure.   I don’t trust pharmaceutical companies but I trust in the science behind them.  Some people need those meds just like I need my gabapentin.  The inter-patient fighting is dumb.  We have this wonderful resource in each other’s experiences, this giant working brain called the internet; we should be using it to help each INDIVIDUAL get the best treatment for themselves, not use it to chastise others.  I just want everyone, including myself, to be well (whatever version of that that may exist with resources possible).  It’s daunting, and maybe in some other society we’d have a better shot, what with for-profit driving or limiting both medical research, but that ain’t here yet either.  

22 minutes ago, WinterSown said:

It was beneficial  to both my mental and physical health that I ended my membership in FB POTS groups. So  much uncontrolled misinformation and many had seemingly adopted the tone that it was better to be there complaining and being ill in camaraderie than discussing the ways and means of returning to health. I thought the posts about 'my pillbox tower is taller than yours' were self-defeating. And, hide from the anti-exercise harpies who demand a trigger warning in any post that mentions exercising to improve your health. The only dysautonomia group I still visit at FB is an exercise and nutrition group. I need reliable content and education in a more encouraging setting. That's why I am here.

Agreed.  Would you mind linking to that FB group?  I’m on the Dysautonomia International FB group for Massachusetts.  And one on Reddit.  But it’s so POTS-dominant that I probably only get a small % of useful tips and then ideas.  

6 minutes ago, Clb75 said:

Have you had a test for small fiber neuropathy? I remember from a previous post they ran a nerve conduction test and emg, but these only test for large fiber damage. You can have a negative nerve conduction test but have small fiber damage and have the burning and tingling feeling. They typically do a skin biopsy or a qsart test for small fiber damage.

I haven’t had those tests yet.  : /

1 minute ago, MomtoGiuliana said:

With your family history of B12 deficiency I would definitely pursue that question with your doctor.  I am sorry they were not willing to run more tests on this.  Your symptoms (burning etc) do sound like they are consistent with low B12.  I was having burning and other sensations in my extremities until I took large dose B12 for several weeks.  Perhaps you need to try to see a hematologist or someone with expertise in vitamin deficiencies.

Yes.  I was hoping that’d be the case too.  Especially given how non invasive a uMMA test is.  But the problem is is I don’t have low b12 but high b12 (which I also heard could cause burning).  

I can't drink coffee, tea, soda, alcohol, or do my favorite thing in the entire world --- smoke medicinal marijuana.  Which tells me something is truly off in my ANS if I get shakes by doing the latter.  I've basically been as clean as I've ever been over the last 4 months, except maybe eating kind of meh.  Was juicing a lot but that waned.  

I still have the burning.  But I think it's because of nerve damage or something like that.  I'm also at work right now under nothing but fluorescent lights.  Today has been a very poor day for me, after a few not so poor days.  The burning has never been this bad.  

5 minutes ago, POTSGIRL123 said:

also if you have that how do you get the b 12 into the cellular level...with the IV ??? 

Injections or maybe the sunlingual pills could help. 

7 minutes ago, WinterSown said:

You don't have to have dysautonomia to have parasthesia. Not everything is caused by dysautonomia even though so much is. I am 60 and along with dysautonomia I have a whopping case of all my organs being sixty years old. Is it dysautonia or the effect of natural aging. Quite a conundrum but it doesn't matter the cause as my doctors are wonderful souls and still treat the symptoms. I have had some relief from physical therapy and exercise giving me better overall perfusion.  Aspirins help me with the pain just fine, if I am also shaking bad I take a milligram of valium on orders of my EP, it's a muscle relaxant. I rarely get parasthesia without some tremors but when it is bad I need the valium.

True.  I just wonder what all this is...and then I question why I'm even on these forums and other groups?  I'm only 33 so I'm entirely sure what's up.  Dysautonomia seemed to matched at the time, and even my first neuro said yes, then no, and then definitely no once the ttt came back.  I have an appointment with a rheumatologist in 2 weeks so maybe they can shed some light on all of this.  I'm secretly hoping it's something like functional b12 deficiency.  My mother is extremely non-anemic b12 deficient, and everyone on my dad's side supposedly has this MTHFR gene mutation.  But I don't know the full science behind that and have heard conflicting things about it.  : (

12 hours ago, WinterSown said:

It sounds like parasthesia. I get it from blood pooling in my extremities. https://en.wikipedia.org/wiki/Paresthesia

What's crazy is I have a bunch of doctors saying I still don't have autonomic dysfunction.  I even contacted the lady who runs Dysautonomia International, told her the neuro I saw who signed off on my tilt table test, and she said "No.  He would not miss it."  So if not autonomic dysfunction --- what???  I'm so confused.  Thanks as always Winter.  

I woke up today with the worst burning sensations all over my body.  It was awful.  My hands feel so darn weird.  Not weak but like I definitely notice I'm having issues with certain fine skills with them.  I was having two ok days and then this.  The burning is everywhere and so annoying.  I take gabapentin but doesn't seem like it's holding it at bay.  Does anyone else have this burning all over?  I get it in my toes, my hands, my forearms, my ears, my head/brain, ears, chest, face.  It's so awful and stress obviously makes it worse but now it's affecting my ability to even type or write.  Or just sit there peacefully.  Is it neuropathy or something else?  What makes this all so odd is I'm not a typical autonomic case.  I don't have POTS, NCS, OH, etc.  I have dismotility issues for sure, this stupid nerve pain/neuropathy, trouble sleeping, and of course my mood is soured tremendously.  But to think I'm losing my motor functioning would be also terrible.  It just never ends.  

1 hour ago, Potsie1990 said:

I get the b12 shot from time to time. I also take a b complex vitamin gummy from time to time also when I can remember. The shots are nice because it lasts a lot longer 

I was told my doctor to not take b12 methyl.  My b12 is already above normal (926) but I suspect it’s because I’m not absorbing it due to an underlying autoimmune disease (not diagnosed).  Early on I had a myriad of symptoms that fit b12 issues.  I still do.  There is something called Functional b12 Deficiency, but my PCP doesn’t think that’s it.  But he couldn’t know this, I think, without running certain tests.  

1 hour ago, Anamaria said:

I get them all in the same places! Hopefully the magnesium will help. I’m also going to start swimming at least twice a week so maybe that will help some too. It’s good to know I’m not the only one. 

Yes.  They’re more annoying than anything,  but I’m slowly learning to tune them out and not exacerbate them by getting anxious or over-exerting myself.  

10 hours ago, Anamaria said:

Amongst other annoying symptoms that I have I seem to have a lot of muscle twitching lately. I’ve started taking Magnesium and B12 complex to see if that helps but I was wondering does anyone else suffer muscle twitching? If so, anything that you’ve tried to get it to stop? 

I get it all the time.  I also take magnesium.  But I find it also helps wuth digestion.  I get twitching in my quads, calves, face, ear, and arms.  Maybe my butt sometimes too.  De-stressing as much as possible helps.  Keeping active as best possible (like, for distraction purposes).  Getting enough sleep.  Remembering to take my meds.  And light exercise.  I’m not sure if they’ve stopped but you can definitely decrease their frequency.  

3 hours ago, DizzyGirls said:

Sorry, haven't been following the thread, my daughter's been really sick, but wanted to throw this in the mix.  Her ANA over the past several years has been mostly positive with a 1:40 titer, speckled pattern.  Rheumatologists would just laugh in her face, literally, even though there is strong family history and she was symptomatic.  Jump to last year and her titer increased to 1:80.  Hmm, still no go with a rhematologist that we decided to give a second chance.  That was a mistake.  Fast forward to a couple of weeks ago when a very zealous movement disorders neurologist determined she was going to get us some help and ran some out of the box labs.  Her ANA is now 1:160 (doubled since the previous one), pattern is homogenous (I keep forgetting to look that one up) and her Anti TPO Antibody test came back high (autoimmune thyroid test).  It's supposed to be less than 6 and my daughter's was 32.1.  So, the moral of this story is, just because your ANA is low now, it might develop into something later.  My daughter's condition is screaming autoimmune thyroid.  Most likely Hashimoto's or something I ran onto today, Autoimmune Hypoparathyroidism.  If you have any symptoms of thyroid, don't just go by the normal TSH, T3, or  T4 panels.  Make them run the Anti TPO Antibody test.  The doctor had commented that no one ever tests for this one and she didn't know why.  So thankful she did!  Read something by Dr. Graham Hughes (foremost authority on Lupus) and he was asked if someone had a low titer, but was symptomatic in addition to having a strong family history, would he treat them or wait and see what would happen.  He said he would treat.  Always treat in those situations.  So, don't let the medical profession act like there's nothing there.  There just might be and the sooner you get treated, the less damage it will do to your organs. 

Thanks for the helpful advice.  I see my rheumatologist on the 31st.  I’ll ask for that.  Very helpful.  Hope your daughter gets the help she needs 

2 hours ago, StayAtHomeMom said:

Yes. I went for a short run and could never breathe right. Within 2 weeks I was at the ER. Within 2 weeks after that I could barely leave my bed. 

Having kids and a family is harder. You have to be what they need no matter how you feel. They kids need food. Husband needs stuff done around the house. My house is generally always messy because I don't have the energy to do it. And they won't. But it is what it is. I am still here and the world goes on. 

I figured as much.  I hear for many it's literally just like a switch that goes off.  You go from active to inactive in a heart-beat.  I was just emotionally hit, to say the least.  One minute I'm holding down two jobs, commuting 4 hours a day, and the next I can barely clean my room or bother to bathe.  I was never like this before.  I suffered depression and anxiety, yes, but could always plop down and get 8-10 hours of sleep if it meant putting my head on a broken beer bottle for a pillow and newspapers for a blanket --- did not matter in the slightest.  Now, even with "sleep hygiene," or so-called sedatives, I barely crack 2.5 hours of solid sleep.  Weird.  Indeed: the world goes on.  

2 hours ago, jklass44 said:

3 cardiologists, 1 internal medicine specialist and 1 neurologist later... I finally have a diagnosis of hyperPOTS. Is it wrong to say that I was actually relieved when the doctor told me? Lol. No more "Oh you just have anxiety" or "You're probably just lacking sleep". It almost feels validating in a way to know that I wasn't just crazy all those years.

It sounds like getting a diagnosis is just half the battle though? I'm super sensitive to a lot of medications so that will most likely be some trail and error. I also need to continue making some (slow, subtle) lifestyle changes as well to try and beat this constant fatigue. Does anyone have any light exercise recommendations that I could start with? Preferably indoors as I don't do well in heat.

Thank you in advance. Hope everyone has a great weekend

That's good.  Hopefully you can be on the path to some alleviation.  Congrats.  

1 hour ago, dizzytizzy said:

@zerohours000 I am scheduled to be seen in the autonomic clinic at Cleveland in November. Local EP has diagnosed auto dys, but doesn't have the capability to perform any of the testing like Cleveland does. I know there's some arguments that the extensive testing isn't helpful/worth it, but for me personally, it will help peace of mind...I think 😁 I'm someone who needs to know the whys behind things and want to do what's within my reach to find that out. 

I've been unwell since 2004 and largely gave up doing any further testing around 2008 or so. Switched to this PCP in 2014 and she's really went above and beyond trying to help me, but we've run our course as many of the labs - like antibodies - have come back normal. Mainly have the chronically elevated inflammatory markers and now elevated prolactin, DHEA, and cortisol. She's disappointed by the rheum visit and thinks a visit with an endo may be worth it. We'll see. Pretty burnt out with MDs at the moment. 

To better answer your question: As more symptoms have piled up and nothing definitive has shown in labs/radiology, the PCP has run out of ideas. 

That makes sense.  My PCP was flummoxed the very first day.  And on our now 3rd visit, he just sort of scratches his head and shrugs.  Not a good sign.  But if the usual route bears no fruit I may look into Rochester or Vanderbilt.  Once they exhaust "broad based" digging they're sort of out of their element.  I'm sure that's why specialists exist but it looks like even they don't have the precise tools of this sort of thing either.  I'm not sure if I'm piling up symptoms --- as some have come and gone in the last 4 months --- but there are definitely ones that have become steadier and more consistent (like the sleep, for instance, is guaranteed to be awful).  I guess all I can do is wait.  

2 minutes ago, dizzytizzy said:

@KiminOrlando: Titer was 1:40, no pattern. I'll PM you more details, so as not to hijack the thread. 

But in short, I heard the resident (who performed the history/physical and exam) tell the rheum that "doctors have convinced her that there is something wrong with her." So the 8-hour roundtrip to Cleveland was a waste this go-around. 

Would you still recommend an autonomic clinic?  When did you decided to go to such a clinic?  Like, was there a threshold where your normal PCP just couldn’t handle or do much more for you?

11 minutes ago, KiminOrlando said:

I don't know if I agree with your Rheumatologist. What made him say nothing was going on? You have a positive ANA, elevated inflammatory markers and physical symptoms. Did your ANA have a smear pattern? It would be on your bloodwork. Did he run tests for Rheumatoid-arthritis and Lupus, etc, and because they were negative, dismiss you? 

What was your ANA ratio? 

You seem very knowledgeable in this area.  What should I 100% ask for at my appointment?  

Thanks in advance 

15 minutes ago, StayAtHomeMom said:

I am 32 and my POTS started 3 years ago. I felt like things were bad. Not even 30 and my life was upside down. Things get better.

I am sure the doctors have already checked you for basic life threatening things. Now they just have to find out the issue. Doctors are only human and sometimes make mistakes. Sometimes they are only given a few pieces of the puzzle and expected to tell you what it looks like. Be patient. 

Did it come out of nowhere?  

Oddly, I feel at peace with the life in disarray outlook (I’ve no wife, gf, or children so my empathy goes out to you anyone coping with that additional emotional strain—though I imagine having kids is pleasant in that it literally gives you something to live for).  

If I could only sleep I think I could be more tolerant of all this.  It’s been my biggest bugaboo.  I don’t even mind the occasional pain or two.  Or the scary neurological symptoms.  Not getting sleep literally will kill anyone in the long run.  

I’ve always been very surly with a good sense of humor but I can’t find the funny in much of this.  To be consistent, I guess I can’t be bitter, since I’ve made it a point of pride to  live the opposite of others.  But d*** if I don’t yearn for anything resembling normalcy right about now.  Thanks for all your replies/support.  I literally need this site like I need air.

3 minutes ago, StayAtHomeMom said:

I have had joint pain for 15 years, random fevers, low body temp. Yet all my blood work comes back normal. In my yearly blood test I have them check my RH factor and sed rate just because my mom has RA (and her mom had it). I expect it is going to show up eventually just based on symptoms and I know that if I get a handle on it early it will not be so bad. I figure good numbers means I am good for now. If I am lucky it will never show. 

Recently my hands get very cold.  Not sure if that’s a marker of anything but they go cold pretty easily these days.  I guess there’s so much I just don’t know.  

2 minutes ago, StayAtHomeMom said:

Not sure. I was just told mine was negative. I imagine it is kind of like the rheumatoid factor. You can have it but not have rheumatoid arthritis. And vice versa. 

I see.  I just feel like I’m a dead man walking at this point.  🤷‍♂️ 

Im 33 and I just feel like this is it.  

6 minutes ago, Pistol said:

I have generalized joint pains with swelling and abnormal knee arthroscopy ( showed inflammatory tissue ) as well as chronic fatigue ( believed to be caused by POTS ). I also run elevated temps at times for no reason. WBC is low, RBC is low. ANA and CRP are normal, ESR is high. Based on the ANA and CRP I am not auto-immune. I just want to let you know because even with symptoms and some abnormalities in labs there is no evidence of auto-immune disease. 

Sorry to hear that.  I don’t have pain per se but I’ve no clue if it wil gradually come on and whatnot.  Right now my eyes are burning a bit.  

5 minutes ago, dizzytizzy said:

@zerohours000: I hope the rheumy will be helpful. Not to hijack, but I just saw a rheumy at Cleveland Clinic yesterday (had high hopes) because I have a positive ANA and chronically elevated ESR and CRP as well as joint pain and just generally diffuse symptoms for the last 15 years. My PCP has thought for years that I had something rheumatological going on. 

This rheumy didn't place much weight on any of it. Said that "a lot of people have high inflammatory markers." Ok, well that's probably not a great thing, right? 🙄

Left with a diagnosis of fibromyalgia and no further suggestions. 

Thanks.  I see them in a month.  I figure cover my bases.  I don’t have any pain or swelling but who knows.  I think part of my anxiety is not knowing a) what’s going on and b) if it’s goih to worsen and show itself for what it is. 

1 minute ago, KiminOrlando said:

Your doctor is right, it may mean nothing, but I am glad you are going to a Rheumatologist. Did you get a copy of your bloodwork? Did they check SED rate (it may say ESR) and CRP? If not, the Rheumatologist will likely do it. 

I also have an autoimmune disease, but not everyone does. Don't worry about what might be. Just wait for more information. 

Keep us posted.

I had my SED rate checked by another doctor.  I have my blood work through my patient site.  

Im trying not to worry but I just always go to the worst possible scenario, which isn’t helpful but I can’t help but think I have the fatal kind of Dysautonomia because I’m not developing the POTS or OH.  Or eventually will.  A wreck, basically.  

I started citalopram, which was my idea.  I figure it couldn’t hurt.