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Another Day, Another Diagnosis


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It's funny how, when I finally was told that I had POTS, a diagnosis was like the best thing ever. Now? Not so much. POTS, NCS, Hashimotos...it kind of feels like I'm collecting them. Like baseball cards or beanie babies.

Small fiber neuropathy this time. I thought that was what I was going to hear, but it's still kind of annoying to have it be official.

I don't think that I'll get any better, honestly. I just don't think my POTS is that type of POTS. I've had it for as long as I can remember and it's been a slow decline...But I'd love to have the symptoms level out while I'm still functional. This slow progression is irritating the heck out of me.

And it kind of scares me. I'm 26. If my body's this messed up now, how will it be in a decade? Or even a year?

As you can tell, I'm throwing myself a bit of a pity party tonight. Back in the saddle tomorrow, but tonight life kind of *****. Blah.

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I agree - all these diagnoses seem rather useless, considering there's no cure for any of them. I also worry about the future. If I feel 80 now, how I am going to feel in 10 years, 110? The good thing is you're young and time is on your side. I cling to the hope that answers will come through all the research going on - (soon would be good!).

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Hi Libby

I know just what you are saying, I had a relative say to me not so long back..."so when are you going to have a baby?" Have a baby are you serious???? I can just about stand up, walk and feed myself let alone doing it carrying a baby! I just couldnt be bothered to even go there and i just smiled and said "oh one day".

Another thing that really annoys me is when normal people complain they are exausted or shattered, and you think to yourself gee i wish i was exausted from working a normal 9-5 day job. What are they complaining for? Becuase they over ate at lunchtime and they had to much wine the night before..? But what can you do, its an old cleche but people really do not understand what its like to be ill until it happens to them.

The only way i can make myself feel better at the moment is join places like this, research the net for new treatments and approaches and make it your goal to improve each condition you suffer from one by one. I have learnt that me/Dr's can not fix everything at once. This sounds terrible but write a list in order of your illness as to what effects you the most in daily life and tackle that problem first, then go to the next one, and the next one, and the next one, and next one lol...................................................................................

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Oh I can so relate to all 3 of you.........

I've just turned 31, and since I had to quit working 3 years ago I've collected diagnoses like candy.

Dysautonomia, POTS, NCS

Small Fiber Neuropathy

Chiari Malformation (borderline)

Mast Cell Disorder

Vestibular Abnormality

Facial Neuralgia

PolyEndocrine Failure (not confirmed)

Thyroiditis

Mitochondrial probem (possible)

all suspected to be some unknown auto-immue or genetic disease.

I try to tell myself that they didn't know what Lupus was or AIDS or Lymes disease was all that long ago.

So maybe they will figure this out before I'm gone, but at this rate I'll be gone before even my Parents.

I have a great mind, in a body that doesn't work.

As far as kids go........I get the question a lot because I had a hysterectomy last year to try and stabilize some of my symptoms.

People seem to feel bad for me when they hear that.

Even if I wanted kids and could still have them...... I wouldn't..... this stuff runs in my family, and I wouldn't even chance passing all this on to my worst enemy, it's nothing but pure torture and suffering.

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So sorry you all are so young with this....I first was symptomatic in my early 40's, so my children were old enough to help themselves, thank goodness, and now they are grown, when I became very ill, several years back. I was just diagnosed last year, and was relieved to at least get some treatment. It does wear on you after awhile, especially if you were an extremely active person, as I was. I am worn out, and can't imagine having small children. My heart goes out to all of you♄. Maybe they will find a cure, instead of a bandaide for you all. Praying for you all to be stablized enough to where you can appreciate life, and be the best you can be! This is not easy, but my faith has helped me through this, and I know you will surely get some answers. There is a lot of research going on now, so I am hoping for the best answers for those of you who are young. Don't loose hope....

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I know this is probably not a fantastic question to ask, but nobody has ever answered it, especially the Drs. If you live with daily Tachy, how much stress and strain does it put on your heart, do you think that alone can decrease life expectancy by much...

Oh what a cheerful post this is.... :rolleyes: !!!

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I know this is probably not a fantastic question to ask, but nobody has ever answered it, especially the Drs. If you live with daily Tachy, how much stress and strain does it put on your heart, do you think that alone can decrease life expectancy by much...

Oh what a cheerful post this is.... :rolleyes: !!!

Yes, I've asked this question before too. The answers I've gotten vary from ... since the tachycardia is not sustained, it's likely not going to cause damage... all the way to - it caused congestive heart failure. So I guess the answer is - who knows!

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I know this is probably not a fantastic question to ask, but nobody has ever answered it, especially the Drs. If you live with daily Tachy, how much stress and strain does it put on your heart, do you think that alone can decrease life expectancy by much...

Oh what a cheerful post this is.... :rolleyes: !!!

Yes, I've asked this question before too. The answers I've gotten vary from ... since the tachycardia is not sustained, it's likely not going to cause damage... all the way to - it caused congestive heart failure. So I guess the answer is - who knows!

Until proven otherwise, I'm just going to assume that tachy gives my heart the exercise that my body refuses to and, thus, is good for me. :lol:

No popping my delusional bubble!

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Until proven otherwise, I'm just going to assume that tachy gives my heart the exercise that my body refuses to and, thus, is good for me. :lol:

No popping my delusional bubble!

LOL! :lol: You know, I've actually wondered how the body differentiates. How does it know we're not exercising? How is the tachycardia we get different from what the heart would do during exercise? So many questions....

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Oh this has made me smile today.... Atleast we can laugh.....sort of!! :unsure:

I have been talking to a lady on here who is going for an injection (nerve block) That can make the Tachy far less bothersome.

It works on sinus tachy so i really dont know much about it but she has pots and is giving it a try, does anyone know about this???

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While I have no idea what a "nerveblock" is, it sounds like it is less invasive than an ablation and if I am not wrong, it is for treating inappropriate sinus tachycardia.

I Googled it and found this artical from 1976! it is called (stellate ganglion block):

http://www.ncbi.nlm.nih.gov/pubmed/1247352

Here is another artical from 2012!

http://emedicine.medscape.com/article/1819950-overview

Hopefully I am not wrong here, if so, then (moderators) feel free to delete my reply!

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If it's an ablation, I've heard that pacemakers work better for POTS, but medication should be tried before these alternative methods. As far as the life expectancy issue is concerned, if you don't have any heart defects, and you don't have other complications, whatever that means, you should do OK. In other words, they really don't know, because this disorder is very complicated, and they don't have all the answers. Only God knows the number of our days. Enjoy all you have, and make the best of every day!!

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i understand, the collection of symptoms list.

before being dx, took 20 years, i was scared of hospitals, probably due to the lack of dx.

yet now when i get another name of a condition i have, i laugh, and add it on to the rest!

when people complain of their one condition, (i shouldnt be harsh because i would of been the same) i think wow, just one, have my list!!!

ive gone past the point now of wishing for a 'one good healthy day', i guess because i know its not going to happen. yet a day with quiet symptoms would be nice.

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