Re: Alexandra and her Health Part 2

[Helen]

Thank you for this information, Janet! 

[EmmyLee]

I politely disagree. It may be fine to wonder whether Alexandra's eyesight had deteriorated due to too much reading or crying, but I think that suggestive speculation about serious disorders when it is clear that Alexandra did not suffer from the most common symptoms of these disorders is overstepping the mark. This is just my opinion, of course.

All right, this is where I agree with you, Helen. I agree that "speculation about serious disorders when it is clear that Alexandra did not suffer from the most common symptoms of these disorders" is not a direction our discussion should take (emphasis in the quote added by me). If it is indeed clear that Alexandra definitely did not experience those symptoms, that we likely don't need to speculate further on that particular disorder. However, when it isn't clear what symptoms if any she had for a disorder on our list, I don't see why we can't discuss that possibility.

Perhaps we could just comment on this and then cross those disorders off of our possible lists?

[historyfan]

Yes, thank you, Janet.

And Helen, thank you for your opinion.  I don't entirely disagree with you.  I just think it's too bad that poor Alexandra was never formally diagnosed with anything, and treated accordingly.  (At least not to my admittedly limited knowledge!  Someone please feel free to correct me f I'm wrong.)  It could've saved her a lot of problems.  Of course I'm aware that medical science wasn't what it is now, but honestly, there are a lot of people today who are merely treated for symptoms, without getting a whole, clear picture of what actually ails them. 

I'm a naturally curious person.  My favourite question is "Why?"  I'm not happy with just facts.  Sometimes even having possibilities helps, if the alternative is knowing nothing at all.  That's just me.

[carkuczyn]

"Purple Secret" mentions the DNA tests performed to identify the remains found in Siberia, but does not provide any evidence that Alexandra suffered from porphyria; I think it does not even discuss the question whether her various health problems might have been caused by porphyria. And for good reasons, I think: Alexandra suffered from back problems, headaches, fatigue, anxiety at public functions, and an 'enlarged heart' (cardiomegaly?), but not from symptoms common in porphyria patients such as abdominal pains, vomiting, seizures, hallucinationsepression, etc.; the clinical picture of her health problems does not seem to fit that of porphyria.                                                                                                                                                   



 She did have abdominal pains, paranoia, and depression.  One does not have to have every symptom of porphyria in order to be diagnosed with it.  And there are several forms of porphyria...one in particular being porphyria variegate which presents with a variety of symptoms.  I do not think porphyria can be eliminated.  Also the book devotes a whole chapter on the possibility of Alexandra having porphyria.

[Helen]

She did have abdominal pains, paranoia, and depression.  One does not have to have every symptom of porphyria in order to be diagnosed with it.  And there are several forms of porphyria...one in particular being porphyria variegate which presents with a variety of symptoms.  I do not think porphyria can be eliminated.  Also the book devotes a whole chapter on the possibility of Alexandra having porphyria.

Carkuczyn, could you please provide reliable sources proving that the Empress suffered from regular abdominal pains and was diagnosed with paranoia and depression, other than stories from her adversaries? She may have felt suspicious of various people, but you only have to read the "The Empress Fights Back" thread to see that her suspicions were often justified. And while she often felt very tired, her letters show no signs of a clinical depression. 

Perhaps you have a different edition of the book than the 1998 edition I have. What edition do you have? According to the index of my copy, the Tsarina is mentioned on not more than 4 pages throughout the book. And although the table of contents mentions a chapter on Princess Charlotte's daughter Feodora, my copy has no chapter on Alexandra Feodorovna and the possibility of her having porphyria.   

[Helen]

Thank you for your posts, EmmyLee and historyfan!

I just think it's too bad that poor Alexandra was never formally diagnosed with anything, and treated accordingly.  (At least not to my admittedly limited knowledge!  Someone please feel free to correct me f I'm wrong.)  It could've saved her a lot of problems.  Of course I'm aware that medical science wasn't what it is now, but honestly, there are a lot of people today who are merely treated for symptoms, without getting a whole, clear picture of what actually ails them. 

Yes, it is too bad. When Alexandra took 'the cure' in Harrogate in 1894, a doctor advised her to lie on a sofa, so that more blood would flow to her aching leg. I've always wondered whether present-day physicians and specialists would think this a wise recommendation for the long term. 

Diagnosing her may not have been that easy for the doctors then - i.e. without modern blood tests etc. - and finding a remedy/treatment probably even more difficult. Alexandra herself realised that her tiredness was at least partly stress-related. Her brother said the same about her earaches.

[carkuczyn]

I have a 1999 copy (the publisher is Corgi Books).  Chapter 11 is titled, "Alexandra, Russia's Tragic Tsarina" and it includes pages 270-292.  The author leaves the theory open to speculation.....but I believe the evidence is strong that she did have porphyria.  Doctors of her day did not often make official diagnoses of depression and paranoia preferring instead to call it "suspiciousness" and "melancholia".  Psychiatry was not as refined and specific as it is today.  I am a registered psychiatric nurse......and I can honestly say that psychiatry is not an exact science due to the fact that we deal with things that are not able to be seen on an xray.  Today, I am certain that depression would be in her diagnosis along with a lot of psychotic features.  Just my educated opinion..........I am always open to debate.

[Janet Ashton]

I have a 1999 copy (the publisher is Corgi Books).  Chapter 11 is titled, "Alexandra, Russia's Tragic Tsarina" and it includes pages 270-292.  The author leaves the theory open to speculation.....but I believe the evidence is strong that she did have porphyria.  

The tests I mentioned were carried out at John Rohl's wish after he wrote this chapter. He was disappointed to find that they were negative, but negative they were. So unless Alexandra's porphyria was in some way caused by ANOTHER, different and undetected genetic flaw (which would be pretty unfortunate in one family!) I guess one has to accept that she did not have porphyria.

Apart from this, I was sceptical about Rohl's thesis because I don't think that her tendency to develope red spots when embarrassed - a common tendency in fair skinned people; even Anna Anderson shared it and this fact was used by her supporters to suggest they must be related, which we know was not the case - was in any way the same thing as the agonising - and long-lasting - blistering and peeling of the skin described by her aunt Vicky and cousin Charlotte when they were exposed to certain drugs or even to sunlight. I have never in any of her correspondence or any related medical reports seen Alexandra declare that she had been afflicted by a blistering rash. Nor, indeed, is there any particular evidence of stomach pains, vomiting or so on. Once or twice she mentions that medicines have affected her stomach; I don't think this is any particular evidence of porphria as it happens to a lot of people. And, despite reporting every medical detail to her husband (they discussed his constipation at length) she never mentions purple or bloody urine. Variegate porphyria certainly has a variety of symptoms (and I don't claim to be an expert since most of my information comes from Rohl), but it was variegate porphyria from which her cousin Charlotte is now assumed to have suffered, and I don't think that her symptoms had much in common with Alexandra's at all.
The other royal diagnosed with it more recently was of course William of Gloucester, whose symptoms were more similar to Charlotte's, including the blistering of the skin.

I have always accepted that Alexandra suffered from migraine, sciatica and - later in life - from possible genuine damage to the heart brought about by anxiety (which will eventually cause or contriibute to high blood pressure and thus ultimately damage all internal organs)

[Helen]

Thank you for the information on your copy, carkuczym! This chapter does not appear in my copy. 

I understand that psychiatry was not as refined and specific as it is today, and that it's not an exact science. You say you are a psychiatric nurse and are certain that the Empress suffered from depression and had a lot of psychotic features. I think most professional psychiatric nurses and psychiatrists would not make a diagnosis at all or would exercise more restraint in 'diagnosing' someone whom they have never met, who has been dead for more than a century, and about whom many fabrications have been spread, including fabrications about her mental health. After all, labels stick and we're not talking about such 'innocent' illnesses as the flue. 

And thank you, Janet, for the further information on the tests. The tests confirm what I already suspected, as I too thought that Charlotte's symptoms were clearly different from Alexandra's.

[EmmyLee]

I just think it's too bad that poor Alexandra was never formally diagnosed with anything, and treated accordingly.  (At least not to my admittedly limited knowledge!  Someone please feel free to correct me f I'm wrong.)  It could've saved her a lot of problems.

On page 60 of Helen Rappaport's book (yes, I've been quoting this a lot, but I just barely finished it), she mentions a German doctor, Dr. Fischer, visiting Alexandra and reporting on her "mental and physical condition" in 1910. Apparently, "what the eminent doctor had to say was, however, deemed too close for comfort and he had not been invited back to the palace again."

I wonder what he said.

[Janet Ashton]

And thank you, Janet, for the further information on the tests. The tests confirm what I already suspected, as I too thought that Charlotte's symptoms were clearly different from Alexandra's.

I think they had some symptoms in common - and described them in such similar terms that when Rohl's book first appeared I sat and thought about all this a lot and wondered about Alexandra - but those don't seem to me to have been the ones which would be crucial in a diagnosis of variegate porphyria. Charlotte, for example, complained a lot of "rheumatism" - as did many of QV's descendants, including Alexandra - and her "nerves" (ditto!), as well as endless headaches, but it was the abdominal and cutaneous symptoms which I think were crucial to Rohl's thesis, and these are the ones where Alexandra differed, I felt. Charlotte also seemed to have a definite paralysis of the limbs at times, which is due to anaemia arising from errors of haem synthesis, whereas Alexandra never compained of that, even if she did say she had pains in various places.....

[historyfan]

Yes, it is too bad. When Alexandra took 'the cure' in Harrogate in 1894, a doctor advised her to lie on a sofa, so that more blood would flow to her aching leg. I've always wondered whether present-day physicians and specialists would think this a wise recommendation for the long term. 

Diagnosing her may not have been that easy for the doctors then - i.e. without modern blood tests etc. - and finding a remedy/treatment probably even more difficult. Alexandra herself realised that her tiredness was at least partly stress-related. Her brother said the same about her earaches.

I've often thought that at least part of her ongoing problem was lack of exercise - advised, of course, by her doctors, who thought she should rest, but good walks (as much as the sciatica would have allowed her) would have helped.  Or swimming, or such.  Nicholas, after all, exercised constantly, and he was healthy as a horse (except one or two notable episodes!)

[Romanov_fan]

It is really hard to say now what she did or didn't suffer from. There was defintely much stress in her life that contributed to her ailments. She seems to have had anxiety, maybe.

[Helen]

I've often thought that at least part of her ongoing problem was lack of exercise - advised, of course, by her doctors, who thought she should rest, but good walks (as much as the sciatica would have allowed her) would have helped.  Or swimming, or such. 

Yes, this is exactly what I thought too. Without proper tests it's impossible to establish whether some recommendations she got were 'wrong'. However, if her condition allowed more exercise, it could have strengthened her muscles, including her heart muscle. She did take exercise in the first years of her marriage, by the way. She joined Nicholas on his walks and even had a rowing machine.

[Helen]

I think they had some symptoms in common - and described them in such similar terms that when Rohl's book first appeared I sat and thought about all this a lot and wondered about Alexandra - but those don't seem to me to have been the ones which would be crucial in a diagnosis of variegate porphyria. Charlotte, for example, complained a lot of "rheumatism" - as did many of QV's descendants, including Alexandra - and her "nerves" (ditto!), as well as endless headaches, but it was the abdominal and cutaneous symptoms which I think were crucial to Rohl's thesis, and these are the ones where Alexandra differed, I felt. Charlotte also seemed to have a definite paralysis of the limbs at times, which is due to anaemia arising from errors of haem synthesis, whereas Alexandra never compained of that, even if she did say she had pains in various places.....

Yes, there was some overlap in their complaints. However, rheumatic pains were very common back then. QV's descendants complained of rheumatism, but so did millions of other people. I think the diagnostic value of such pains is probably limited in this context.  As regards Alexandra's endless headaches, I thought them less relevant, as I think headaches are not a primary diagnostic symptom of porfyria. But I may be mistaken. I do wonder, though, what did cause these headaches.