So Scared Please Help

[tpapik]

lately ive been getting very weak. (background story) I was diagnosed in november with POTS after the premature loss of my baby. tachycardia - negetive MRI of the brain positive TTT, abnormal Sqart. normal Valvoler *sp* normal adrenal fuction, normal echo stress test, inappropriate sinus tachycardia. - and now f/u with a neuro muscular doctor tomorrow for possible small fiber neuropathy right now my symptoms are fatigue, nausea, tachycardia (alot) but more recently im really scared-

my left arm is very weak. sometimes it twitches- weaker than my right. when I blow dry my hair its hard to do it without fatigue. its always achy. I am now thinking I may have ALS :-( (Leugerigs disease) anyone have any advice or encouragement as i am so very scared

Thanks

Tiffany

[tpapik]

sorry MRI brain negetive

[angelloz]

Weakness is not unusual with many of us...so don't jump ahead to something worse. In the beginning of my illness I was constantly afraid and this makes symptoms worse...but I know how scary it all feels. Take a deep breath and slow down your thinking. Do something to take your mind off of your thoughts. A funny show works well for me!

Angelloz

[looneymom]

Don't be scared. POTS is very unpredictable. Since you don't know exactly how POTS is going to affect you body, symptoms can be scary. It's very helpful to have a doctor and nurse line handy and you have found us online. My son was diagnoised with POTS over a year ago and has been through many test. He has tremors and twitching from waist down. This symptom started 3 months after his diagnosis. POTS has many strange symptoms. Don't be afraid to ask questions and search for answers. Welcome aboard.

[arizona girl]

The unknown can always be scary. From experience though actually finding out what is wrong, brings a lot of relief, as then you can name the thing and do what you need to, to overcome it. Their is validation in knowing what's up and that it's not in your head.

So far it sounds like you are on the right track diagnosticly. A neuromuscular neurologist for skin biopsy is a logical next step. I'm not sure where you live, but you are fortunate to have found a neuro that knows this subspeciatly of neurology and is familar with skin biopsy. There are not a lot of them.

This doctor will also check your large fiber nerves, which are the nerves that effect your mucles and movement. Make sure you tell them about your arm symptoms. While it can happen in women ALS is mostly found in men. So I wouldn't go there. There are other autoimmune neuromuscular disease that this neuro should be able to check for.

BTW, exactly what happened on your tilt table with your bp and hr? That also can point you in the right direction.

I'm sorry to hear about loosing your baby, I lost mine at 7 weeks. That was before I knew what I had. I was a bit older though and was not able to have a child. I'm doing okay with that, but it was hard at the time. You've been through a lot and I wish you smooth sailing as you go through the diagnostic process.

[tpapik]

I happen to live close to the cleveland clinic- so this is where I am going ; what other neuromuscular diseases are there? weir thing is i can still do 10 pushups easily. during my tilt table my blood pressure stayed the same.... but my heart went directly tachy to 140's not even seconds upon lifting me up.... and as soon as they put me down- back to normal. no symptoms of dizziness whatsoever.....no symptoms at all which is weird

[arizona girl]

Well that sounds like pretty classic pots. There may not be anything else other then that. The fact that you have no symptoms is good too. This may turn out to be something as simple as not hydrating well enough. Let the neuro doc figure it out for you. Show him your arm and your results you already have and take it from there. No need to put a name to this yet.

I would rule out anemia and thyroid disease considering you had a pregnancy loss if I where you. Those can cause a high heart rate too. Wishing you a good appointment today.

[tpapik]

appoitnment is tomorrow- I have been ruled out on thyroid issues, anemia, all the simple things. my sqart test showed abnormal - so looking at small fiber neuropathy/

[MomtoGiuliana]

Hope your appt provides some answers. Weakness was a major symptom for me when I was very sick 10 yrs ago. I know that is very scary and it feels like something very serious must be wrong. It most definitely can be "just POTS". I hope you get answers and treatment to help you feel better soon.

I am sorry about your loss of your baby. Emotional experiences can also play a role in POTS as well as hormonal changes.

[bellgirl]

So sorry about the loss of your baby. I lost twins, but have two healthy sons. Your symptoms seem pretty normal for us though, so I wouldn't get overly concerned about this. I would suggest to go to a rheumatologist and possibly an endocrinologist, too. Your hormones being skewed, certainly doesn't help matters either, and that can cause emotional and physical trouble, as well. Make sure they also do testing for MS, as well, at the neurologist. After I had a virus, I had a lot of weakness on my right side, but that has gone away. Any time you have your arms up too long, it can set off your tachycardia, and it is not unusual for your arm to become weak, numb or tingly, since we also tend to have low blood volume. Drink plenty of fluids....

[TCP]

I know it's hard for you, but don't be scared. Get checked out and see what happens from there. Good luck

[britishangel6]

Potsies are more likely to have dizziness, weakness, ect when raising your arm(s) above your head. When I was finally getting my doctor to listen to me I found an article but can't seem to find anything now, sorry. When I went for my TTT the cardiologist did the test mentioned in the article; if I recall it was just occluding one of the arteries in my neck with his hand and observing my vital sign responses and asking me about symptoms (while laying down). Essentially, I think the problem can be that when you move your arm up it can partially occlude or compress an artery from your body up to your brain, which leads to decreased blood flow and causes the complaints. It's not progressive or anything to add extra fear, just avoid those activities.

Tpapkik- I was scared when I first got diagnosed too. I was very happy for along-awaited answer but with all the reading online we do we find some very scary conditions that can appear similar to POTS earlier on. However, POTS is to be diagnosed only after those other conditions are ruled-out. Also, having a brain MRI should give you a lot of reassure as many of the scarier conditions would show. Good luck.

[shan1212]

I hope you get some good answers at your appointment. Hugs. I'm very sorry to hear about your loss.

I have a really hard time blowdrying my hair too. Any exercise or activity that requires that kind of arms above head movement is tough, even when I'm in fairly good shape. I think it's a POTS thing.

[Chaos]

So sorry to hear about the loss of your baby. And that you're having to deal with POTS on top of it.

Like others have said, weakness, numbness/tingling and tremors are fairly frequent complaints amongst those of us with POTS. I have had a lot of issues with those particular complaints. It's good you're getting it checked out but do try to take a deep breath and not jump ahead to dire diagnoses like ALS, etc.

I was at a cardiac rehab conference recently where the speaker was explaining that using your UEs for an activity has been documented to stimulate the sympathetic nervous system more than using your LEs. That would explain why so many of us have noticed a significant issue with anything involving our arms, especially overhead activities- since at least one of the theories behind POTS is that there is an excess sympathetic drive that's occurring in us already. Then you add using your arms overhead, which adds additional stimulation to the SNS even in a normal person....and we're really asking for trouble.

Good luck with your appt. tomorrow.