I was diagnosed with PRV Jaq2+ back in 2014 after having a stroke in 2012 - Although I hadn't felt 'great' health wise since 2009!
Long story, cut short. I spent 11 days in hospital after I lost the use of my right leg in August 2012 - I couldn't feel my leg or walk on it (my son-in-law had to carry me to the loo) it was a useless limb doing nothing! During the 2012 admittance to hospital the MRI showed lesions on my brain. The initial 'diagnosis' was of MS. (I thought I had a trapped nerve in my back)
6 months of physio to try to get me walking again and numerous appointments with the neurologists then had them scratching their heads - they didn't think it was MS!?!
So, I was basically discharged, with a dodgy right leg and lesions on my brain and no confirmed diagnosis as to why it had happened. I kept questioning! Why I could no longer walk in slip on shoes... why did I, 6 months before look after major million pound business energy accounts successfully and now couldn't get my brain around simple day to day tasks?
After seeing numerous consultants during 2013 it was finally agreed that I had a stroke in 2012! Again, I was left floundering like a half dead fish out of water. No help and no support.
Then in October 2013 I woke up one morning with a huge red, throbbing hot lump on the top of my right hand. It was a blood clot. I went to my GP, who took blood tests and 2 weeks later met my now haematology consultant for the first time. Shortly after I was officially diagnosed with PRV Jaq2+ .
Since then it's been a rocky road. My GP admits she doesn't know a great deal about PRV, so she can't do a lot as she just gets the standard clinical letter from my hospital clinic appointment and I have to speak to my consultant about 'issues' relating to PRV.
Final update; Since November 2017 my regular venesections haven't been helping. My ferratin is low - between 4 and 11 due to regular venesections. My last traumatic venesection in April only resulted in 120mg instead of 560mg being taken, due to veins which collapsed. I've gone from an optimistic PRV 'sufferer' to a sullen, unmotivated, depressed MPN sufferer. I am also really suffering from PRV symptoms; fatigue on a 100% scale, pruitus so bad I can't sleep, constant everyday headaches & pains and a feeling like I have flu x 100
My darling Daughters have witnessed the change in my well-being and suggested I refer myself for a course of CBT, which I did today. My assessment appointment is on the 19th July... my question. Has CBT helped anyone with an MPN work their way out of chronic illness depression? Is there any hope to regaining my previous positive mindset with CBT?
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Kari1961
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Hi Kari. I think that CBT and the other psychological interventions are very useful BUT only alongside having confidence that you are getting the best available medical treatment. Otherwise it can feel like a stuff off.
Maybe paying, if necessary, for a second opinion from an MPN specialist might be worth it. If you can give rhe second specialist your test results ( which are the expensive things) then you can ask the secretary how much it will cost for a consultation and review.
I’m sorry I can’t help you , I’ve never tried or know anyone that has tried CBT. You’ve certainly had a horrendous time. Have you started Hydroxy yet? I found that helped with the itching.
If ever you want to talk, or unload, please message me, I’m happy to meet up.
I'm so sorry to hear of your ordeal and its gone on for so long! I'm afraid I can't help with info about the CBT that I do understand the frustration your going through, I have lost most of the use of my right shoulder due to something that came on overnight, was excruciatingly painful for around and week and left me partially disabled and they can't find anything more wrong with it other than tendonitis of the supraspinatus. I do hope someone on here can answer your questions for you. It sounds like you need a break!
Just wanted to piggy-back here for a moment as I also recently suffered from a right shoulder blow out, and the only thing that has really helped has been a cortisone injection circa 7-8 weeks ago. Although the problem still exists, I can at the very least manage it a tad better now than prior to the cortisone injection.
I find it quite a curiosity that you have also suffered from something that sounds remarkably similar to my own event.
Both my shoulders do ache at the CV joint, and I was putting it down to both having been a former cricket player and long range surf-ski paddler for most of my adult life... However, I was an opening bat/wicket keeper & never wanted to be a bowler...
Thanks everyone. Since 2012, it's all been a bit of a roller-coaster. From 2012 until 2014 I was in active 'fight' mode, determined to get to the bottom of what was causing my ill health...
Then from PRV diagnosis in 2014 until last year everything started to 'feel' relatively normal.
Until treatment started to go a bit out of sync in late 2017. Since then I've felt like I'm just not getting a break in the trauma of it all. My HCT was high at .50 at my last clinic appointment and I feel so fatigued that I could sleep on a washing line... until it gets to bedtime and then I'm awake after 3 hours sleep.
Due to fatigue I've fallen over 4 times, in as many months - I'm so tired that I forget to lift my leg up to walk!
My Daughters and friends have noticed a decline in my mood - my usual get up and go, has got up and gone.
I went to see my GP at the beginning of the week and she suggested physio to strengthen my leg - I've got an appointment in August, and medication for my low mood. I declined the meds and my Daughter who works for the NHS in a mental health team suggested a self referral for CBT, which I'm hoping will help. I just need to get out of this mental health downward spiral.
I'm self-employed, so as I'm feeling down and lack motivation, my business is also suffering as I lack motivation with that too... which means I'm not making sufficient money to live as I was (more worry)
I'm hoping to start on Hydrea at my next clinic appointment in July - which, fingers crossed will mean less venesection and PRV symptoms. I know that I need to get back to where I was after diagnosis. It just feels like it's a long way off getting there.
I was going to recommend that you get a second opinion, but you have mentioned you’re about to start hydrea. I think this may make some difference to your debilitating symptoms given time. I have ET and am taking hydrea. As well as bringing my platelets down to normal levels it has also reduced my haematocrit and haemagloben levels which were both raised too.
I’m not sure about CBT, I don’t know much about it so I can’t really comment.
It sounds to me like your PV is not being controlled very well at the moment, and understandably contributing to your low mood. As you have mentioned, hydrea will reduce your venesections too. Hopefully, if you can reduce some of the physical symptoms it may naturally lift your mood.
I'm so sorry to hear of how difficult things have been for you. I have experience with CBT. I used this kind of therapy when I was going through chemo and radiation five years ago. through most of the treatment and for months afterward, I was too exhausted to do anything and feeling depressed.
Not only was my therapist a sympathetic person to talk to regularly, but she provided me with strategies on how to use the small amount of energy I had to get some small things accomplished daily, which made a big difference in how I felt. She also helped me change my perspective so that I felt more optimistic and less depressed.
As others have said, anything you can do to improve your physical situation, like starting urea, could make a big difference, too.
I hope this helps. If there are any other questions you have, just let me know.
Kari, have you ever had your Vitamin B12 levels tested? (I have B12 deficiency, so may be totally barking up the wrong tree, but I do know that B12 deficiency can cause brain lesions and that some people with it have been initially misdiagnosed with MS).
Thank you for your suggestion. I'm definitely going to request it gets checked. I've just taken a look at the symptoms of it and I tick many of the boxes for advanced B12 deficiency. x
Hi Kari, I thought that myself, although of course don't know for sure until you have it tested. It's very important that you don't take any B12 supplements until you have been tested as this can skew results. I strongly recommend the Pernicious Anaemia Society group here on Health Unlocked, they are a wealth of information and support. They support those with PA and with B12 deficiency (PA is one cause of it but there are several others).
Very best wishes to you and do let me/us know how you get on. x
I really am very sorry but this will be my third attempt to send you this post, as on both prior occasions the MPN Voice website lost my post entirely. Hence, this time, I have made it a Word.doc first... ☺
Therefore, to begin again:
Long story short, as you say...
In May 2016, prior to my diagnosis of MF, (in August of 2015), I experienced one of the most memorable and fascinating moments I have thus far ever known before...
Whilst in mid flight of a standard conversation with a friend at a café; suddenly, I noticed a slight sound in my left ear, (it was tinnitus), and at first it just started out as a small rumbling but quickly grew to an enormous crescendo that culminated in an almighty – CRACK!
Almost like an explosion of sorts, it actually reminded me a great deal of what it was like to experience an (6.7 Richter scale), earthquake in Western Sumatra in 2010.
As I mentioned, I was conversing with a friend as this event transpired, and in those minutes: first the tinnitus, then my vision became monocular, my speech became slurred, followed by total paralysis of my right arm, followed by some nausea and a tad of vertigo...
I recall thinking how strange it was that all of this was taking place while I was like an imprisoned spectator watching from the inside, the outside events, and my discourse partner knew naught of what was transpiring with me at all...
Immediately following the event, I went to the nearest medical centre to the café, (less than 5 min’s away), and was tested for everything but bloods because of my terrible system of veins. All tests were negative for a stroke-like event (?)
Then, between 6-8 months ago, I awoke in the night with a mild paralysis of my right arm, feeling like my head had just exploded again, along w/ the nausea & vertigo...
Unfortunately, for me, my platelets are stubbornly staying at circa 900-1M, which in turn always makes me quite concerned that I might die long before my MPN transforms yet again, from death by stroke, or much worse; to be permanently incapacitated and then to become the burden on others...
Many years earlier, I use to manage/market for a medium sized Building /Development company, where I too also managed large funds of behalf of third parties. So interesting similarities...
Of all the people I have spoken too since diagnosis, I usually get around to asking about whether they ever experienced any levels of heavy stress; prior tp their MPN diagnosis... Most replied in the affirmative.
CBT – Cognitive Behavioural Therapy:
In one application, CBT is a method that deals with issues that relate to people struggling with problems of using Alcohol & Other Drugs – AOD). Hence, it is a method used in counselling to help people understand the triggers that cause them to pick the drug of their choice in order to deal with the problems that they struggle to confront and contend with.
In that sense, I suppose one might think of it as a type/form of meditation. A management tool to overcome some of the pitfalls etc...
Kari, I am not a medical person, however, some PV sufferers also use Ruxolitinib (Jakafi), to deal with some of the symptom burdens of PV.
Have you ever had a Bone Marrow Biopsy (BMB) performed?
I use to suffer from bad pruritus prior to going on to Ruxolitinib (Jakafi), after which I barely notice it anymore at all...
I truly empathise with you Kari, and hope that something that I have said might assist you a little.
Thank you for your response. I haven't had a BMB and to tell you the truth I am actually dreading the thought of having to have one. I had a lumber puncture back in 2012 when they were trying to figure out whether I had MS and it was horrific!
Local anaesthetic just doesn't work for me. If I ever need dental treatment I tell them not to bother as it won't work, and I'll just end up feeling really ill for days after it. My Dentist just does tiny bits at a time, lets me rest and then goes back to do a bit more.
When I had the lumber puncture they used the maximum amount allowable to perform it and I still felt pain like nothing else ever! It felt like the nerve in my leg was being ripped out of my back The poor Dr just had to carry on with the procedure, while apologising every few seconds.
It is interesting is it not, as I have also had a lumbar punch, (spinal tap), back when I was a very young teenager (c.13-15?), when I was suffering from unexplained vertigo & monocular vision. Hence, yes, I can agree that they are nasty things to experience...
However, please do not feel/think that a BMB is anything like approaching the same type of thing, as it really is NOT...
I barely noticed mine, either before or after... And I seriously believe that one needs the answers one does derive for MPNs via BMBs. They really do contribute to beginning to understand what is actually happening to us internally at a molecular level, in my view...
It usually only takes 1-2 hours and its all over... Easy stuff, really
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The poor Dr just had to carry on with the procedure, while apologising every few seconds.
MPN struggles
platelets down . Hematocrit up
Is there anyone with PRV on HealthUnlocked living in Australia?
LOW IRON, Platelets AND PV
Anyone else had liver damage - and what was the cause - wrongly diagnosed?
