What Is Your Docs Philosophy On This??

[Guest sonotech]

I am just curious as to what other docs are telling their patients when it comes to your prognosis.

I have had a slow and gradual INCREASE in symptoms over the last 6 years. I just finally got diagnosed 3 months ago, so have just started on meds for POTS.

Am curious about what doctors think the odds (of someone who has had this disease for a long duration with increase in symptoms) are of getting COMPLETE improvement is.

I dont know really what to expect. I am TRYING not to get my expectations up too much but I cant help but wonder how much (if any) improvement is to be expected.

I really get tired of dealing with this "day in" and "day out" (just like all of you do) and am tired of this disease RUNNING MY LIFE. Everything I do revolves arround whether I can physically handle it or not so there is too much thought and planning that has to go into EVERYTHING I do.

Any info or opinions would be great!

LAURA

[Eillyre]

Sending a springtime hello your way, Laura!

Both Dr. Low and the electrophysiologist I saw at UPenn said that most POTS patients experience at least some measure of improvement (nice to know, but rather vague ). It was only a small minority that experienced no improvement at all (good news!).

In terms of who and how many POTSies recover completely, both did say that there were some who do; the electrophysiologist said that most of his patients did have close if not full recovery (keep in mind he only saw 1-2 patient per year with POTS), however neither doctor specified an exact percentage.

They also didn't give specifics about the chances of recovery for "long-term" POTS patients. The elecrophysiologist did say that he had some patients with severe symptoms for several years who did make close to full recoveries once they found medications & managing measures that worked for them (again no percentage given).

In my case, my POTS symptoms were very disabling and progressively getting worse for a year until I found an effective medication. From then on they have improved steadily. As long as I take my Mestinon, keep up on salt and fluids, and keep from overtiring myself, I barely notice any POTS symptoms. My quality of life has vastly improved! Now if I can just manage to shake CFS!

Hang in there!

Angela

[Lukkychrm42]

Hi there!

I hope you're having a good weekend all of you,

When I was at Vanderbilt in August, even though I didn't have a history that concurred with their assumption, they thought my POTS was post-viral and that I'd 'get over it' in a few years since most do. Even though I had all the classic signs, they didn't look at all into the possibility of its being caused by Ehlers Danlos, which we now know. That kinda irks me, but it wasn't really their job, though I think it'd be beneficial to their research to know.

My current cardiologist hasn't discussed a long-term prognosis except of his confidence in finding some combination of meds to relieve my symptoms. I haven't been able to find out if with the EDS the POTS will be able to ease up or go away, though I rather doubt it. Unfortunately.

I think that general understanding is the type of POTS you have will dictate (at least partially) your prognosis and treatment options....

But I'm still optimistic about the future.

[Poohbear]

My local cardiologists still say they expect me to improve within 5 yrs (because this is what they read in the papers by the 'experts). However, I really don't understand how they can still say this to me because #1 I was diagnosed 10 yrs ago and have slowly gotten worse over the years and become more disabled--not better and #2 I've been seeing HIM for over 5 yrs and tried every med available.

Mayo Clinic told me "Hopefully you will improve in time however some people make great improvements and those tend to be people who got this Post viral"

Vanderbilt told me that because it appears I've had symptoms most of my life and I've gotten worse over time that it appears my case is certainly not post-viral. While they still offer hope that I may improve (they state improvement will be based on finding a combo of meds my body will tolerate) they also told me that when they publish or say "most patients improve" that it is a very broad term. They told me I should expect improvement but maybe not to the point I can function the way I want or engage in the activities I want to.

What 'irritates' me is how most Dr's are misinterpreting the "most patients improve within 5 yrs". I think they need to clarify that improvement many times does not = a normal quality of life.

[morgan617]

My doctor is pretty blunt and I appreciate that. He says all he hopes for is some slight improvement in the quality of my life and that he considers my prognosis fair to poor. I have steadily declined over the last year. I can't remember the last time I have even a fair day and am wheel chair and bed bound at this point.

I do not want to burst any bubbles, but I would get pretty sick of all those vague , well a lot of people get better, most people get better, some people get better, responses. Some people probably do get better, but it's an individual thing and any good doctor can tell if you are getting better or worse.

My doctor refuses to give up on me, but we are both grounded in the realities of my health situation. I am not a pessimist, but a realist. If I continue to decline, it's pretty realistic to assume, I'm not going to get better. By this, I don't mean having bad days and good days. I mean a continuous decline. So we need to keep this relative to each person.

I am blathering, sorry. I don't want anyone to lose their optimism, it is so important. But I don't want vague really unresponsive answers either. I am owed the truth by my doctor and if he doesn't know, that's what he should be telling me. I can look up all the vague stuff I want, but I SEE him and he SEES me, so who to know better what my personal prognosis is. Sorry....morgan

[dianaD]

This is one of the most frustrating parts of this condition -- the unknown. Will I ever have a "normal" life? Will I get worse?

The best, i.e. most accurate comment I've heard was from Grubb's latest article. I think he sees the most POTS patients and seems to LISTEN to patients when they explain how it has affected their quality of life.

He said that about 50% of people with "regular" POTS will recover to the point they will have few or no limitations on their lives. This can take 2-5 years. Your chances of this level of "recovery" are better, the younger you are. He said that 'Hyperadrenergics" will need medications all their lives. If the POTS is secondary to another condition, it depends on treatment for the underlying cause.

Her said that studies will need to be done to obtain firmer numbers. These are his best guess, from what he has seen.

There is still hope for us, as long as researchers are still taking an interest in this condition. Meanwhile, we probably know more about POTS than most docs-- even some who "specialize" in POTS. So, we have to keep looking for new treatments and, if needed, new doctors.

Hang in,

[dawn]

Laura,

I was diagnosed 14 years ago, I think I have always had POTS. I just tolerated better when I was younger.

Mayo doctor's thought I would improve with menopause.

This was not the case. I am 50 and have been getting progressivly worse.

I was optomistic. I now just take one day at a time. I got very depressed when had to give up my job as

a school nurse 2 years ago. I have felt kind of lost ever since. I worked as long as I possibly could.

My internist said you are going to be one of those little old ladies who faint all the time.

I have tried every medication my doctor could think of.

It's hard to accept this is how I feel because as my husband says "You just don't have the personality for this."

WHATCA GONNA DO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

Dawn

[Guest sonotech]

THANK YOU ALL!!

You dont know how much I appreciate all of the honest points of view that you have given me! I think I always deal better with the TRUTH.

I tend to be an optimistic person in general, but am not oblivious to the reality of this.

I also had to quit working just a few months ago which has been very difficult for me both psychologically and emotionally. I have always enjoyed working and taking care of others and my profession means so much to me that I would have never quit even if I had WON THE LOTTERY!

So this has been really tough. I am just trying to prepare myself for the possibility that I might never be able to work again.

I pushed my working "limits" as far as I could, and when I lost 3 jobs in 1 YEAR due to hospitalizations and too many sick days, then I had to face reality.

I figure since I have had "full blown" POTS for 6 years now with steady increase of symptoms AND can actually trace some symptoms (less lifestyle affecting) way back to HIGH SCHOOL (20 yrs ago) that I might not have a good chance at much of a recovery and am trying to mentally prepare myself for this.

It is SO hard to NOT feel "inadequate" or even like I am a "weak" person for NOT being able to continue working. How do others deal with this??

Thank you ALL for the great responses, they were all very helpful and much appreciated.

LAURA

[morgan617]

Laura, I honestly just take one day at a time.

I had to cut back on work, had six different jobs in one year, had to quit working, go on disability, stop driving, and am now in a wheel chair or reclined on the couch or my bed. Our income has been cut by 2/3, and my husband has to work a million hours a week and then come home and do 90% of everything.

I was a nurse for almost 30 years and a darn good one too. I loved my career, it was a huge part of my identity as a person. Two years ago i decided not to renew my license. Even if i got better, I could never do nursing again. It was harder for me to do that than give up driving. It tore my heart out, I swear.

I am quickly getting much worse. Some days i wonder why in the heck I'm still here. But I just find a reason to get up each morning and try to accept my new life. My, kids, my hubs, my pets, whatever.

I have told the people close to me when something new hits, (for instance I did not have syncope or paralyze till last August, what a blow.) they need to allow me time to grieve yet another loss, another downward turn. I need to be allowed to be sad or grumpy, or fatalistic for a bit, then i will work through it and move on. This is very important to me.

I fully understand that this illness has affected my whole family and I have lost all but one or two friends. But they all allow me this very important time to come to terms with each new limitation, for however long it takes. Then I take a big breath, pick myself up, dust myself off, and get over my pity party.

I am not a person who says, someone else has it so much worse than me. I guess that's selfish, but somedays i just need to feel bad. If I am less a person for that so be it. I am not the person i was 6 months ago, let alone 6 years ago. Some do have problems worse than mine, but some of my problems are worse than other people's, so i guess it evens out in some twisted way. I used to say, why me....now I say why not me...I'm not that special, I'm just another flawed imperfect person who has a crummy illness too...

Get me up, dust me off, and on to the next day..........morgan

[Eillyre]

In all fairness to Dr. Low I think I ought to add an "addendum" post -- he didn't just feed me a bunch of vague lines.

In regards to my specific prognosis, after speaking with me and reviewing test results, etc. he believed that if Mestinon worked for me I would be much improved after 1 year (able to walk arouund a block or two, light exercise each day, able to get out of the house for 1-2 hours, possibly even taking one dance class a week) -- which has been the case. He suspected that things would continue to progress somewhat after that 1 year, but that also depended on to what degree we had been able to sort out the CFS symptoms. His professional opinion was that CFS, not POTS, would end up being the only significant hindrance for me as long as the medication worked. He was right. Having just passed my post-Mayo 1 year mark, his suspicions have been confirmed.

The absence of percentages on recoveries were about the POTS population as a whole. I think because our cases vary so much in complexity from person to person, neither doctor felt he could give "hard" numbers as to exactly how many recover fully, partially, not at all, etc. Sorry for the confusion on that point. I didn't realize the original query asked for our specific prognoses.

Angela

[ellen]

IMHO I don't think anyone knows the real answer to this because POTS has not been fully recognized by the medical community yet.

I was so discouraged by the doctors I saw back in the nineties when I was really sick, that I just stayed home and suffered for several years. I have been taking Florinef for eight years, but the doc who prescribed it never mentioned POTS. He said he didn't know what was wrong with me (he's retired now). Who knows how many cases have gone unrecognized?

If I hadn't researched it myself, and asked my PCP if I might have POTS, I would never have gotten a diagnosis. The EP he referred me to said I problably would not get better because I have been sick for so long. The next visit he said, You'll probably get better. I feel like I have gotten worse. I probably will not go back to him, so he will never get the feedback from my case. I think it needs further study.

[morgan617]

Just to make it clear, I was not referring to any particular doctor at all. Any doctor not able to say, I just don't know drives me crazy.

I have the utmost respect for ANY doctor that jumps into the field of research that 99% of his peers don't even believe exists. But I agree this is so new, no one really knows the outcome. Some get better, some worse, some stay the same. Like lots of other illnesses.

morgan

[yogini]

I was told I would get completely better in 6 months to a year. It's now two years, and I am a lot better, though far from cured. I don't think I can complain too much if things continue in this direction. I think the outcome is really depends upon personal circumstances. I also think there are a lot of POTS patients that aren't on the forum or don't know about it, so it's really hard to know what the true long-term prognosis numbers are. It seems like the forum would attract people with more severe cases - we are the ones that have POTS on our mind the most and have time to post.