Old 02-20-2013, 09:09 AM #1
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Default I have postural orthostatic tachycardia syndrome but fear of ALS

My POTs specialist is sending me to a neuromuscular doctor for possible small fiber neuropathy. I see him tomorrow; but lately I have had muscle achyiness in my left shoulder all the way down into my left wrist and sometimes left fingers. - they seem very weak byt more so just achy like i just got an IM injection (like a flu shot or something) but it feels much more weak than my right, though i do get achyness very rarely but on the right side too. its moreso id say a muscle fatigue . I have only noticed tremors in my left arm very occasional. I can still lift my 10 lb kettle bell, I have no problems buttoning anything or fine motor movements I can walk fine with no problems- and I know pots can cause achyness but recently it seems to get weaker and weaker, i never had this prior to a premature birth of my baby in october , and since then have had problems with POTS and even typing makes my left arm feel weak... should i be really concerned? I am a 26 year old female. diagnosed with POTS- had a clear MRI of the brain. I also get pin prick feelings ALL OVER my body , have been very depressed and anxious due to the loss of my baby and decline in my health. please help with your words .
Tiffany
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Old 02-20-2013, 09:31 AM #2
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

please i am very scared
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Old 02-20-2013, 10:02 AM #3
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

I'm not sure what is scaring you, Tiffany. A small fiber neuropathy, although not the most pleasant of things, is not life-threatening. POTS isn't the most fun of things but that, too, is not life-threatening. It appears your biggest issue is the loss of your child, which I hope you're getting counseling for.

Obviously you're here because you fear ALS . . . why I'm not at all sure, because not a single thing you have shared would have anyone who knows a thing about ALS, suspect you have it. How on earth have you talked yourself into it? "Pin prick" feelings have zero to do with ALS . . . a "feeling of weakness" that radiates down an entire arm has zero to do with ALS . . . an achy feeling down an entire arm has zero to do with ALS . . . and muscle fatigue is different than muscle weakness (muscle weakness is the hallmark of ALS).

You don't have ALS. What you do have is POTS and obvious depression and anxiety and a possible small fiber neuropathy. Deal with the problems you have . . . NOT the ones you think you have. Stop making your life worse by imagining you have diseases there isn't a shred of evidence you have . . . and I assure you . . . regardless of what you think, you don't have ALS.

I wish you peace.
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Old 02-20-2013, 10:10 AM #4
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

The tremors that I have noticed in my left arm and shoulder make me concerned. . .I know I have anxiety and have been through much stress - my first counseling appointment is next monday.- with a christian counselor (due to my faith) and I hope that , that can help me a lot- I look at my symptoms and i go with the worst case scenerio. so the tremors is what pinpoints me to ALS with the muscle Fatigue. I just feel that everything in my life has gone downward spiral- loss of baby- to nausea- to a gluten free dairy free diet - to fatigue - to losing my job - to now this . i jsut feel that everything is bad but the muscle fatigue in the left arm and twitching makes me think ALS
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Old 02-20-2013, 10:30 AM #5
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

and then what is the difference between muscle fatigue and muscle weakness? (trying to learn here)
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Old 02-20-2013, 10:31 AM #6
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

I am sorry for your loss. You are going through life changing ordeals and I think you are on the right track in seeking counseling. Anxiety and stress can do terrible things to your mind and body. It is normal to look at the worst and hope for the best. Depression can also cause alot of your symp toms. You may need to go to the doctor and have some blood work done, you could be suffering from a vitamin defincency (sp). I wish you peace.
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Old 02-20-2013, 10:53 AM #7
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

Vicki - my POTs doctor just drew blood for many vitamin B's , D, Copper anad I dont know what else. and I have a new patient appointment tomorrow with a neuro/muscular doc, for the small fiber neuropathy. . . I just want to feel comforted thiinking that its a good chance i DONT have ALS
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Old 02-20-2013, 10:59 AM #8
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

Well I am not a doctor and wouldn't want to say yes or no, but my guess would be no. Listen to your doctor and go to the counseling. I think the counseling will the best for you. Good luck.

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Old 02-20-2013, 12:41 PM #9
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

Where did you "read" that tremors are a sign of ALS, especially in the very early stages of the disease, which is where you would be at the moment? If that was indeed stated somewhere, it is WRONG!

Muscle fatigue: the ABILITY of a muscle to do a task but it tiring over time as that task is being done.

Muscle weakness: the INABILITY of a muscle to do a single task even one time . . . or at the very least . . . the loss of STRENGTH in that muscle that impairs that muscle to do tasks it normally once was able to do.

Furthermore, the weakness you have with ALS is not something you "feel." You lose the ability to do something and you will be clueless as to why it is happening. It is an insidious process that occurs that almost always goes unnoticed, especially in the early stages of the disease.

There was a wonderful forum member that has sinced passed from ALS (he actually had it, so he spoke from experience) that used to state routinely (and I paraphrase): "ALS isn't how a muscle feels but rather how a muscle fails."

To answer the statement you made: "I just want to feel comforted thinking that it's a good chance I DONT have ALS." There is really NO chance you have ALS, given what you have shared . . . NONE . . . NIHIL . . . NADA . . . NO WAY! Your neuromuscular specialist will tell you the same thing. It will be up to you to listen. If you don't, then you have yourself a huge problem, a problem you have created and a problem only you can solve.
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Old 02-20-2013, 01:03 PM #10
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

wright- I thank you for your answer- I am being sent to a neuromuscular doctor for small fiber neurpathy that was found on whats called a sqart test. I feel for all of you who have ALS - and I know no words will ever help - and I give great respect to everyone one of you who go through this with great drive, encouragement, and determination. I thank you. Due to my POTS and possible small fiber neuropathy- I am being tested for MANY things I have gone from a PCP- who sent me to a cardiologist- who sent me to a POTS specialist - who told me I have POTS but is trying to get to the underlyung cause who is now sending me to a - neuromuscular specialist at the C.Clinic. Whatever I have is debilitating. I know that as I have been told that. Heck it could be autoimmune, it could be nerve pinching (but I doubt it) but my symptoms of pin pricks and fatigue, and achyness are real and is not in my head , neaither is my POTS which is constant tachycardia upon standing , blood pooling to lower extremeties exe. Though I do realize that I have a major ddepression/anxiety/hypochondriac problem. After 2 months of denial I have decided to start counseling. I thank you and everyone here to responding to my Posts. i know there are many tests im sure ahead of me, and im glad the cleveland clinic doctors are being aggressive in helping me find the problem- because many POTS patients go without answers their whole entire lives; as i am sure many of you did as well. I dont know WRIGHT if I have created my problem- which I assume your talking about hypochondriac (sp) depression anxiety..... in my head problem, But after Losing my child at 23 weeks after a long fight in the NICU and then 2 weeks in the hospital 2 weeks after she died and then a POTS diagnosis... I DO have a problem with anxiety, depression, and yes scared to what may come next. My husband and mother thinks I have a problem too that needs fixed mentally ,I am working on that by going to counseling starting next week. But when i started to feel my muscles fatigue as well as have them spasm , I started to freak out. I will see what the NEURO has to say tomorrow THank you
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Old 02-20-2013, 03:25 PM #11
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

Just remember, muscle fatigue is completely different than muscle weakness. Reread Wright's explanation of it. With muscle weakness, you would NOT be able to lift a 10 lb ball. You would NOT be able to open a bottle of water. You would NOT be able to turn the car key in the ignition.
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Old 02-20-2013, 06:13 PM #12
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

I'm going to try and repost my post on muscle fatigue verses muscle weakness. It's likely pages and pages back now. Please read it.
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Old 02-20-2013, 06:33 PM #13
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

Tiffany, I hope you can see that my sternness was meant to help you . . . to drive a nail into closing your thoughts of having ALS. I and the other forum members alike.

As far as the "problem" I mentioned: it would be the problem of not listening to your neuro about you not having ALS. I certainly don't want you to think that the loss of your child and your grief and anxiety were made-up by you. I am a Father and I cannot even imagine what it would be like but know that I would be a basket case. Please get help for that grief. It won't get better with time unless you do something in that time that will make it better; time doesn't heal wounds, it's what you do in that time that heals them. You will always grieve your child but you will learn to deal with those feelings better if you get help. It sounds like you are.

As far as your physical symptoms: I fully believe you have them and I fully believe your POTS diagnosis. What I was saying is that you don't have ALS.

I wish you the best and peace as well.
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Old 02-20-2013, 06:45 PM #14
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

HI

Let me add something to what Wright said. With the POTTS, it's possible some of those sensations you're having are being caused by the tachy heart rate. Not in your head at all--that's not what Wright is saying.

ALS is an insidious process that normally starts with ONE thing being off--one hand, one finger, one foot, or in Bulbar, speech. It doesn't start with any symptoms that are ALL over the body.

Losing a child is horrible. I lost 4. I can emphasize with your pain, believe me. Talking with someone will help as Wright said. That being said--it does not make you a hypochondriac to be concerned with abnormal symptoms. Honest.

Obviously, your doctor feels there is something going on--and they will find it--what we are trying to assure you of is that it's not ALS--which is a very good thing!

Please do let us know what is finally decided for you--and try to put ALS out of your mind, sweetheart. Dealing with the loss of your child and your physical condition are quite enough to have to deal with. Take care.
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Old 02-21-2013, 01:20 PM #15
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Default Re: I have postural orthostatic tachycardia syndrome but fear of ALS

I just wanted to let you all know that I am bacl from the cleveland clinic NeuroMuscular Doc- he said NO signs of ALS, MS, at all. I passed the neurological exam and feels no need for an EMG. THOUGH he has to dig deeper into my possible small fiber neuropathy and pOTs therefore go for a thermoregulatory sweat test and Skin Biopsy to look at the nerves in march- this means autoimmune possible with hundreds of autoimmune problems , so thank you for listening to me and I wish you all the luck I am excited to start my counseling, to deal with what I am going rhough . Thank you again
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