Dr. Low

[dawn]

I saw Dr Low in September and did all the autonomic testing again (it had been 9 years.) He recommended I work 1/2 time instead of full time. I worked for a month but was unable. His diagnosis was " orthostatic intolerance, autonomic lability, hyperadrenergic state, possibly related to anxiety." My local internist said it was time to apply for SS disability so in January I did this. I am on long term disability through my employer. I have long term disabillityalso through the state of Wisconsin Retirement System. In order to get this I need 2 doctors signatures. My internist signed and then I wrote a nice letter to Dr. Low asking him to sign (they asked for a neurologist or cardiologist signature). I recieved the unsigned form and this letter today.

Unfortunately, I do not undertake disability applications. I provide a consultation on the autonomic aspects of the condition but am not an expert on disability evaluations. You should be aware that applications by patients with POTS for disability have almost uniformly been denied. There are several reasons for that. The major reason for denial is that the main reason that patients cannot work is because of fatigue and lack of energy. These complaints are regarded by the insurance agencies as being too subjective. A tachycardia on standing or with exercise is usually treatable and is usually not the main reason that patients cannot work. Additionally, it is not considered as being sufficiently abnormal since these can occur in otherwise normal persons with activity.

I wish you well with your health and your future.

I am so p----ed. During his exam my BP was 150/90 supine pulse 82, standing BP 125/85 pulse 140. (ON FLORINEF and INDERAL). I had a "robust" increase in heartrate on the tilt table with nausea and severe frontal headache along with the usual syncope.

I can't believe him. I will never go back to Mayo.

Thanks for listening had to vent.

Dawn

[Ernie]

Hi Dawn,

I am sorry that Dr Low does not want to get involved in the pension process. I can understand your disappointment. I would be too!

Do you have another specialist who could back you up?

I wonder by his comment about the tachycardia on standing and the fatigue if he is even AWARE of how disabled we are with this disorder! The tachycardia and the fatigue are only part of the problem but dysautonomia is multifaceted.

Also, how can he state that your hyperadrenergic state is related to anxiety and what does he really mean? Makes me wonder about his reputation. We just don't get an anxiety attack by standing up, do we? Unless we are Martians and are afraid to walk on planet Earth.

I just can't wait for research to be more advanced so that we will have decent medical care and get the pension that we deserve.

Hope you get your pension soon!

Ernie

[morgan617]

WOW Dawn, that *****! I have heard so many good things about all those docs back east but I am beginning to wonder>>> He says he's no expert on ssdi or pensions and then goes on to explain in detail why you can't get it. That sounds pretty weird to me. This is one of those times you wish this on them, just for ONE LOUSY month and then see what they have to say... I am so sorry. Hopefully you do have another doctor willing to help you. My Gi doc said he wouldn't be much help, but his notes really did. Good luck, I'll keep you in my thoughts. morgan

[Sophia3]

True, only attending physicians can treat and write about disabilities, I do think the form letter could've been worded a little differently and still remained neutral, i.e. doesn't apply to disability status, which I understand since he doesn't see same pts daily.

I especially believe it could be worded differently if Dr. Low did indeed write an article about the disablin aspect of POTS. Then again, I know that a simple article can't be used as 'proof' to anybody but is a method of enlightenment to doctors.

Again, you just need another doc to DOCUMENT and support your limitations. Just move on to the next plan and good luck.

But I edited my previous post since I was PMS'y and not exactly fair to the doc.

[MomtoGiuliana]

Wow, I can't understand this either--except that he isn't your treating physician? And with all the testing of subjects he does, I could see that getting involved with disability claims could become time-consuming.

Can you see a local electrophysiologist and see if they can help you? My electrophysiologist is an autonomic dysfunction specialist. He definitely understands that POTS is more than fatigue and tachycardia for some people. When I was incapacitated by it, he gladly completed the needed paperwork for me to go on temporary disability. I had no problem getting temporary disability thanks to help from him and his staff. A local neurologist with experience in this should be able to help you too.

Katherine

[DawnA]

Unbelievable, Dr Low is the one who wrote the article on how POTS can be as disabling as CHF and emphysema. I wonder if he meant without treatment. Don't give up. You may have to see another Dr. I received disability. You may not receive disabiliyt on POTS but the symptoms of POTS are what are disabling. Good luck.

I was not impressed with the neurologist that I saw up there either. He said that he saw absoulutely no signs of muscle weakness, but I am an OT. The way he tested my muscles was inadequate. It would only show severe weakness. I was shocked. Also, I talked about the panic attacks before I was treated for POTS. I assumed that he knew hyperventilation can be caused by POTS. I was being evaluated for neuromuscular disease. I was shocked when he talked about panic disorder to teh metabolic specialist I was seeing. I was offed more testing...repeat testing and I declined.

So many Drs think that when we are treated and our HR and BP are controlled we feel OK. That is not always the case. I wonder if it has anything to do with the mechanism that causes POTs.

Take care, Dawn

[Merrill]

Dawn, ever the contrarian, I need to offer an alternate perspective.

As you know, there are few doctors' offices and medical facilities in this country that are capable of diagnosing POTS and treating its diverse symtoms. Dr. Low and the Mayo clinic are tops in the field, and many many people who frequent this board have had extremely positive experiences in getting the kinds of tests that are simply unavailable almost everywhere else. Mayo can assist in diagnosing dysautonomia, but ongoing care typically comes from people's local internists, cardiologists and electrophysiologists, and neurologists.

It sounds like you got a form letter, not poor care or ill treatment. It's probably safe to say this is the same form letter that is sent to everyone who wants support from Mayo in disability claims. Don't give up--just go see another cardiologist or neurologist and see if you can get that second signature somewhere else.

It's impossible for any of us to know what it's like to live in anyone else's skin ... and that couldn't be more true for people with dysautonomia because the symptoms are so varied and our capacity to tolerate those symptoms is so idiosyncratic. Why can one person be unable to function and another person--with the same high heart rate and fluctuating blood pressure--work full time? I haven't a clue. But it's true.

I'm a pots lifer, with ridiculously high heart rates (now controlled a bit by beta blockers) and a host of other symptoms. But I do work full time (seated 99% of the day) and make necessary lifestyle adaptations to do so. I write this ONLY because it's important that new people come to this board and learn about how to take care of themselves and understand that many different things are possible with this condition.

I truly hope you're able to get the signatures you need... but what I hope more than that is that you find the right combination of medicines and lifestyle changes and medical care so that you can enjoy a return to health and strength and energy! That is my sincerest wish for every person who reads this note.

Best,

Merrill

[TexasGrrl]

Dawn,

I sympathize with your plight, but I must agree with Merrill. I do not know how POTS makes you feel, since it affects each of us differently. I am a POTS lifer as well, having EDS. I am fortunate in that I can work full-time because I have a seated job, and overall the coping mechanisms (and Clonidine, when it becomes bad enough) provide enough relief that I can just adjust my life to what my body will handle and, for the most part, forget it exists.

Not that I can honestly forget, but after all these years, things have become second nature to me, like avoiding stairs, crossing my legs, clenching my calves, eating plenty of salt, and staying hydrated and cool. Avoiding sugar also helps avoid the blood sugar rollercoaster, which exacerbates POTS symptoms. All of these things are lifestyle adjustments that I work my life around, and I hardly notice I do them anymore. Granted, I have good days and bad days, but with time, I think most people can learn to make POTS not the center of existence.

I must also state that Dr. Low, while he understands that it can be disabling, probably cannot make such a subjective and important statement without being your daily care physician. It puts him in an incredibly difficult position that is easily discredited by the fact that he does not see you every day, and the fact that he also knows how differently it impacts each person is an easy tool to discredit him with. And having him testify, only to be discredited, not only damages your own case but all the others who need disability. It is important to have doctors who are both experienced in the field and with your daily personal case be the ones to determine that you are unable to work, and not someone who has seen you twice.

In any case, I will reiterate that I don't know your particular situation, but I think it's important to emphasize to anyone who reads this that most of us can get on with life and try to work our health problems into a life instead of working what's left of life into our health problems.

I wish you the best of luck, and if you truly cannot work, I hope that you will find another doctor who will corroborate the first doctor's statement and you will get approved for SSDI. And if you are still denied, I hope that you will find a job that you can do despite your health problems.

Much luck and hugs,

Janet

[Miriam Poorman-Knox]

I spoke with Dr. Low specifally about this. The reason he no longer does this is that he spent 2 years really aggressivelt working on getting these approved. He went to court and did the paper work for 20 patients (a good sample) and noone got approved, because this diagnosis IN NOT ON THE APPROVED LIST so he no longer is doing this. He told me that since there are so many things that are also pots and CFS which is on the list to try for that. That indeed some of his patients who appealed or reapplied got approved on the other diagnosis. He is working to get dysautonomias added, which will take forever. Miriam

[morgan617]

I think I'm a little cynical, as no matter how sick I am, none of these "great "doctors will see me. I'm stuck in hootyville with no one understanding pots and it's complexities. It is just a little annoying to me to receive a form letter in the mail, when you have tried so hard to get better. I understand how busy doctors can get as I was a nurse for almost 30 years and certainly dealt with my share of patients that try your patience, but it still seems a little cold to me. I am glad he is trying to get pots on the list, and as I've stated I probably did get mine for other crummy reasons, but this stuff IS disabling and I am getting a lot worse. There was a time I could push through it, but those days are long gone and I just understand that frustration. I had a shouting match with my gi doctor after he called me an addict, (fortunately we patched things up) but it is just disheartening, so I can see where the disappointment stems from. Sorry, I'm in a major fog tonight, but hope you get my drift. I hate spending a lot of money to get treated like I just fell off the apple cart. morgan

[goldicedance]

Dawn, I understand how frustrated and disappointed you must be. However, I do think that you need to be more careful about your posting and personal attack on Dr. Low. Without Dr. Low--one of the founding fathers of dysautonomias--we might be in worse shape than we currently in. Moreover, I think your posting might be considered somewhat slanderous. We should all be careful about that.

I heartly agree with Merrill and Texasgirl. I could never have written such well thought out replies.

On reading the form letter that you received, perhaps you need to read between the lines--i.e., that you should be sure that your doctors do not focus on fatigue and lack of energy. You need to be sure that your treating doctors have objective tests coupled with their expert opinions about why you cannot work.

I have had POTS for over 10 years. Right now, I am on STD because of exacerbation of symptoms. The insurance company has been very understanding and has not made me jump through hoops to get approval. For that I am grateful. After struggling so long with POTS, I am now about to retire. Fortunately I can get a civil service pension based on age. However, there is some reluctancy to go out. I think work has provided connectiveness with the outside world, has given me colleagues who are supportive, and helped motivate me to push on. At this point, I don't feel I have the strength to continue.

Finally, in summing up, you should draw upon the experience of your treating physicians to substantiate your claim and not blast Dr. Low who has only seen you but a few times to do this job. I think we can all agree that his time is best spent on evaluating patients in need and conducting further research. I would suggest that you include his articles as well as those of others to help support your claim.

I wish you luck as you pursue this difficult road.

Lois

[goldicedance]

An addendum--did Dr. Low suggest to you and your treating physician that you try Mestinon? I have tried Mestinon and found better relief than with midodrine and beta blockers.

If Dr. Low did make that suggestion, then I think that you should try it unless, of course, there is a compelling reason that argues against it. It is a relatively inexpensive drug.

Over the years, I have been open to trying different drugs in different combinations to see what works best. As many of us know, it is a trial and error method. Additionally, something that worked several months ago, may not work now.

I'de be curious to know if anyone else is using Mestinon and what their experience has been.

[dawn]

Thank you for your replies. Sometimes we need to vent and I thank those of you who let me do that without judgment.

Yes, he did suggest mestonin, when my sodium level gets to 177 (24 hr. urine). It was 66 at mayo, my most recent test was 87. The local neurologist disagrees with the mestonin and is a big supporter of the midodrine. I intent to try it when and if I stop the diuresis and can get my sodium up.

I did not mean to "blast" or "slander" Dr. Low. I was just very disappointed.

The form I sent him was 6 questions. My local neurologist who knows Dr. Low suggested I have him sign it as my condition involves the autonomic nervous system.

1) Please describe patient's diagnosis

2) Has the impairment caused the patient to cease working?

3) Is the medical impairment due to a work related illness or injury?

4) Are you the treating physician?

5)Date of your last exam or evaluation of the applicant

6) What is the prognosis for the patient returning to work.

I wasn't asking him for help with social security disability. SSDI is a government program that still needs work. Thank you Miriam for enlightening me as to his involvement with the social security system. My long term disability insurance form however through my employer was to be signed by two doctors who have seen me in the past 6 months. In regards to my long term disability claim, through a private organization, I think a form letter negating involvement was less than appropriate.

Question 4 on this list was printed for a reason. No, Dr. Low does not see me on a weekly basis, but yes he is in effect, my treating physicican as my internist acts solely on Low's recommendation. I've had this condition for nine years, and my internist, a well respected doctor, has documented and noted my dilema throughout.

The bottom line is that I need a simple formality, a signature, and in order to get that I need to see a cardiologist and a neurologist who don't have the lab or means to test me?

I can't think of a better person to legitimize my illness than the "founding father" of this line of research.

Those of you who have had understanding employers and insurance companies are truely blessed, but there are others who are forced to rely strictly on the endorsement of "consultants" to survive. We seem to be patients of convienience. I was made an example to residents; my tilt table was characterized as "one of the most extreme" he has ever seen, yet he "doesn't have the right to make disability decisions"?

Edited March 14, 2005 by Michelle Sawicki

[morgan617]

The letter of rejection I got from Mayo said I could be treated for my chronic fatigue where I live. When I wrote back to him, I asked if he had even read my chart as I wasn't going there for fatigue, but pots. I did get another letter in reply. 2 sentences. I am sorry I seemed to have missed your point. This must have distressed you, sorry you are still univited. I envy those of you who have had some questiions answered and some validation from a real medical stand point. I applaud doctors who take the time to try and change things, through congress or just each patient. However, I have seen all kinds of doctors over my 30 or so years of nursing and there are as many or more jerks than there are good ones. My pcp said when I filed, it wasn't a matter of a lot of paper work for him. He had to answer about 10 questions, and send my records, which is done by his staff. His frustration comes from the fact it is a crap shoot. It's not the paperwork they have to do, it's the fact that they want to help you and feel as shot down as you when that doesn't happen. It was my doctor that told me to file, not me saying I couldn't work anymore. I never had the good fortune of a sitdown job. Mine always involved a lot of standing and physical effort. So I understand the frustration of someone who does see a doctor for this specific type illness and is shown no compassion or sympathy. If you see an expert, regardless of what he or she is an expert in, you should be able to expect 10 minutes of their time. I think we have a tendency to place these guys on a pedastal, then we are so let down when they come tumbling off, so I expect that some of the blame falls on us. Please don't delude yourselves into thinking that doctors spend hours struggling over your forms. For the most part, some nurse somewhere is filling it out and he is writing his signature at the bottom. I am not talking through my bottom, as I have been there, a lot more than once. I am glad there are doctors out there who are actually trying to figure this very complex disease out, however, it doesn't help us if they are incapable of compassion. I have met many doctors in my career that I thought would make great pathologists, as they can't really stand to be around sick people. I can't really and have no right to form any opinions about any doctors anyone on this site has seen, I can only go by their constant refusals to see me. And that speaks volumes to me. Personally. For those of you who have had great experiences, more power to you, I am really glad, but for those of us who've felt pooed upon on more than one occasion, please allow us to vent our frustrations. I agree it is iffy to mention names and they should be left out, however, I would hate to spend thousands only to find out it was a total waste, meant only for someone elses advancement and acclaim as opposed to really wanting to help me. This is just my humble opinion. But I would have felt like I'd just seen an ER doc if I had received that letter. morgan

[Miriam Poorman-Knox]

Did you ever consider calling and leaving a message for Dr. Low? It usually taked 3 calls, but he does return calls. This way you could ask him about YOUR SPECIFIC need. Since you have such feelings about physicians, perhaps you could volunteer to talk to residents or local docs about your diagnosis. I have and have been asked to do more. There are many many physicians who are compassionate and want to help. I HOPE YOU CAN GET SOME PEACE>

MIRIAM

[Miriam Poorman-Knox]

>

P>s> I HAVE BEEN MARRIED TO APCP FOR THIRTY YEARS AND CAN NOT TELL YOU HOW MANY NIGHTS HE HAS HAD TO GO BACK TO FILL OUT DISABILITY FORMS> SOME MAY HAVE NURSES FILL THEM OUT HOWEVER THIS DOESNOT RESULT IN APPROVALS I DO TAKE OFFENSE WHEN ITS ALL OR NOTHING IN OPINIONS ABOUT DOCTORS> I have worked in doctors offices as office manager and this was the policy, for them to do the paperwork. Miriam

[morgan617]

Did not mean to offend Miriam. You will note if you read carefully, I DID NOT lump it all or make it black and white. There are good doctors out there. It's great your hubby does that, but as a person who's done all kinds of nursing, including lots of office, they are pretty rare. They are also the ones with the compassion required to be a good doctor. As I'm sure he is. And probably overworked because of it. Sorry that it was taken as a personal dig at your spouse, though it wasn't because I didn't know he was a doctor... morgan

[dawn]

Did you ever consider calling and leaving a message for Dr. Low?  It usually taked 3 calls, but he does return calls.  This way you could ask him about YOUR SPECIFIC need.  Since you have such feelings about physicians, perhaps you could volunteer to talk to residents or local docs about your diagnosis.  I have and have been asked to do more.  There are many many physicians who are compassionate and want to help.  I HOPE YOU CAN GET SOME PEACE>

                                                            MIRIAM

<{POST_SNAPBACK}>

Miriam,

I have spoke with him on the phone breifly, you're right after the 3rd call. I am cetainly not discrediting my local treating physician in anyway. He is the most intelligent physician I have met in 33 years. I have been a nurse for 29 years. Have worked in a clinics for 13 of those years. I've worked with all kinds of "professionals" The doctors at the medical center I see locally are all kind and compassionate. Unfortunately they usually are at a loss as what to do. I have spoken with Dr. Robertson on the phone on several occasions and he is wonderful and has a great sense of humor. Believe me I have tried every medication and treatment suggested. Working these last 9 years has been a struggle. I do the compression hose, eat 10 tsp. of salt per day. Drink the amount of fluids suggested. Do lower extremity resistant exercises. My weight is where it should be. And on and on and on. I don't want you to get the impression I am difficult and non compliant. That is not the case at all. The cardiologist I see on Wednesday is a physician I used to work with in the cath lab so I'm sure after a few cardiac tests he will sign my form. It's just another sum of money I really can't afford to spend. But gotta do what you gotta do.

Thanks for your post.

Dawn

[Eli6596]

I feel for you. I can attest that disability for POTS is obtainable. I received temporary disability with the help of my local cardiologist, specializing in electrophysiology. During my first pregnancy 9 years ago, POTS was triggered but then "resolved" shortly after delivery. During my second pregnancy 4 years ago, POTS was again triggered, a hundred times worse. I received the disability during the second pregnancy while nearly bedridden for 2 1/2 months despite a huge dose of a beta blocker, and for nearly a year after delivery while medications were being added and adjusted. I have private disability insurance through Northwestern Mutual so that might make a difference. I was released from my job because of my illness. I was lucky enough to find another job that accomodates my illness. I take high doses of a beta blocker, midodrine, mestinon, suppress my menses and take salt tablets but still struggle everyday.

I saw Dr. Low at Mayo and had always assumed that he would help me if I ever needed disability again. I was off disability by the time I saw him. This is a shock to hear his policy. I cannot withstand any more pregnancies but I worry about getting the flu and deteriorating.

I empathize with you. Not feeling understood or cared for hurts. I think it hurts so bad because we are already delt a blow by the illness itself. Then, friends and even family have a hard time understanding the illness because we can LOOK young and healthy. I get stares and shakes of the head when older people see me park in a handicap space. Our employers sometimes don't have empathy for something other than cancer. But, through all this we assume that at least our physician will care and maybe rescue us. Unfortunately, just because someone is a physician does not mean that they have compassion. I am not referring to any specific physician. Thank God there are people out there who care who can be our friends, family members, and physicians. We just need to find them or stumble upon them.

I know how it feels to be in a sad, down place. It is natural and needed sometimes. However, it makes my POTS symptoms worse so I try to crawl out of the dark mood as fast as possible. After I have a good cry, I shift gears and try to focus on the things for which I am thankful. I literally count my blessings. If any of what I have written helps you, I can count that as a blessing too. I wish you all the luck, blessing, and strength that you need. I would give you a great big hug if I could.

Karyn