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No treatment in the UK again

Discussion in 'General ME/CFS Discussion' started by Shawn, Feb 6, 2017.

  1. Shawn

    Shawn Senior Member

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    So ,I flew back to London to have my specialists appointment with Mr Zandi and surprise surprise they don't want to give me Rituximab despite a letter from my very respected neuro in Asia who is also highly experienced with such conditions insisting on such a protocol.

    They changed the tone from "imagining" things now to it being purely after effects or "functional" in nature and we all know what the latter word actually means.
    This falls on its head because ..

    1:Every other Doctor I have met outside the UK all agree there is an ongoing process.

    2:if it was just sequela every single one of them told me A: you wouldn't keep slowly declining B:you would not feel such a drastic temporary improvement after plasmapheresis and improvement after cyclophosphamide (which I took last month to fill the time before coming here)

    3:you would not see such drastic flucuations as in this week you feel 70% and then a week later you get burning headaches ,light sensitivity returning and drop down to 40%.


    After expressing some of these points he changed tone a little and stated I could have some kind of immune dysfunction and said can arrange appointment with an immunologist and hematologist which could take months.
    I find this is just an excuse to bounce responsibility as I already have a clear diagnosis and actually before I came back to the uk recently I had a final lumbar puncture (reluctantly) and it showed anti NMDA AB at a titre of 1:/60 in the CSF which is a symptomatic titre.

    Anyway this time i was prepared I already had a back up plan to get everything done in France and since I have a european insurance card it will be at minimal cost.
    Mr Zandi cautioned against "Globe Trotting" for treatment ,well that's easy for him to say he is not the one living in agony.

    I have frankly lost faith in the NHS,esp related to neuro immune disorders and will be purchasing fill bupa insurance from now on,I am done with the NHS.I think the RTX refusal was most likely above all "cost related" and people end up getting bounced around,it's ironic because 6 months ago they told me nothing is wrong and that time I was able to walk better and now my right leg is stiff and clumsy and some things have got worse,you see that's what happens ,at first they tell you nothing is wrong and you get sent away with decline have an episode and then later they tell you it's "after effects" and then once you talk about all the flucuations ect they say it's "some kind of immune dysfunction" which is an abstract twist of the original diagnosis but yet offer no proper immune treatments.

    I will now instruct my solicitor to start legal action against the NHS for damages and lost expenses I have a lot of doctors elsewhere backing me up and some who are writing to my solicitor now,I have set aside a fund for the solicitor and he gave me a massive discount and he has a very good record at dealing with medical cases,a reputable doctor in the EU is also writing on my behalf.

    So there you go ,the sad reality,If I can't even get RTX here with positive CSF the chance of you negative AB ME sufferers getting it is next to zero.

    Doctors here seem to think they are somehow better than doctors in the EU and Asia,this is arrogance if only ,there are some amazing doctors in both ,and what I found is asia in general is a bed of empathy and compassion compared to here ,and no it's not just for money ,2 hospitals I was in before even waived my expenses and one of those was a public hospital with no financial incentive.

    There is financial incentive here though behind a curtain and under the table ,cost cutting is real and your health suffers.

    The true communist medical system is here ,there are few true 2ns opinions everyone looks after the team.

    Thank god the UK is still part of the EU and thanks god also that i have a grandmother born in Ireland so I can get a irish passport so that once the UK leaves I can still keep my EU insurance cards.

    To wrap things up I also caught a welcome to England flu,and you can't imagine how bad having a flu feels on top of this.:( sorry for the sad news I had planned to share some good news but you know....
     
    Last edited: Feb 8, 2017
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  2. Gingergrrl

    Gingergrrl Senior Member

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    Am so sorry to hear this @Shawn and that is such a bummer. Was hoping for better news and am following your story very closely. You are a great advocate and I know you will not give up.

    How the hell do they explain this part? Shouldn't your NMDA titer in the CSF be zero?!!! You clearly have a positive titer for this Auto-Ab, I don't understand how they deny concrete evidence that is right in their face!

    Exactly! I have met very few doctors who understand what it is like to be in the role of the patient who has lost their entire life to a rare illness and is willing to do anything at the prospect of getting even a fraction of it back.

    If you go back to China, can you still get the RTX?

    Good for you.

    Am sorry to hear this and was hoping for better news overall. :(:aghhh::mad::cry::bang-head::bang-head::bang-head::bang-head:
     
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  3. Shawn

    Shawn Senior Member

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    If I go back to China I can absolutely get RTX without a doubt however in was hoping to avoid the expense and receive the perfected protocols at Queens Square.


    About the CSF anti NMDA results ,well refusal to do an LP is def giving a lot of clout to my solicitor and if they do one and find the AB not treating would give even more clout,unless they purposely asked for it to be reported negative ? Paranoid ?.. Maybe but I have lost all faith in the NHS so nothing shady they do would surprise me.
     
    Last edited: Feb 6, 2017
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  4. Jenny TipsforME

    Jenny TipsforME Senior Member

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    What do they mean by after effects @Shawn ?
     
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  5. Shawn

    Shawn Senior Member

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    Means cns damage ,doctors elsewhere and myself don't agree for reasons stated above.Sure I might not be 100% again but point is the underlying process is still running (again for reasons stated above) and that can only be a bad thing.
    Having anti NMDA ab in your CSF at 1:80 is diagnostically conclusive and that's what it was 2 weeks ago,the NHS are playing with my life but I am about to get rough and go nuclear I have an interview with a few papers here I have purchased a massive facebook ad budget and also My solicitor has some pretty solid evidence now,things will start soon..
     
    Last edited: Feb 7, 2017
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  6. wastwater

    wastwater Senior Member

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    I take it you're trying to get treatment for anti NMDA the encephalitis society is a good place for help and information.
    Dr najjar is mentioned in the book brain on fire on anti NMDA
     
    Last edited: Feb 7, 2017
  7. Shawn

    Shawn Senior Member

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    Thanks for trying to help America is not covered by my travel insurance so it's a no no,Mike Zandi is supposed to be an expert which he is ,however NHS cost cutting comes first ,we the people suffer I am sure I am not the only one that has fallen foul to this. In short medical fact : "a person with cns symptoms and anti NMDA antibodies in the CSF has a confirmed diagnosis,that's what i have"

    I am in Europe now I had a back up plan.
    And when I get back to the uk I am signing up with Bupa and paying my 50 -80 quid a month.

    There is no point me explaining the brutality of the NHS here for us neuro immune sufferers we are all too familiar with it.
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    I agree 100% and both amazing and horrifying that the NHS can deny this. Hoping you will get the care that you need in Europe or Asia.
     
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  9. Shawn

    Shawn Senior Member

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    Why would you be horrified? I thought it's common knowledge that they cost cut no ?..Anyway I need some kind of immune suppression also I am concerned about the presence of a low level "anti CV2" antibody which tends to reflect presence of an occult tumor,although my full body MRI was negative.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    I think I was horrified b/c I wanted to believe that with a positive NMDA titer from CSF plus your symptoms that even the NHS could not ignore it. But I guess nothing really horrifies me anymore.
     
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  11. erin

    erin Senior Member

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    @Shawn,

    I admire your courage to go the court for your health rights and I wish you the success that you deserve it in my opinion.

    However, if I were you I would exclude "I may have a few deficits in memory and balance from the past episodes of this but that by no means equates to me not being entitled to sue care and confirmation,as obviously I want to prevent further deficits arising." bit.

    Why are you giving them the remote idea that you might not be fully in charge of your any of your mental faculties, especially your memory. You are very articulate and powerful in defending yourself, do not give them an inch of defect on the mental department.

    My humble opinion, ignore it if you don't think its not appropriate and excuse me being nosy.
     
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  12. Shawn

    Shawn Senior Member

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    Slight memory deficits are common in neuro immune disorders and they had already documented that "very slight" deficit from my past investigation so even if I did not mention it it's recorded anyway ,these tend to improve with time,
    The point is the disease is still active and the CSF proves that and refusal of a lumbar puncture to confirm that is actually (after checking) considered medical negligence under both UK and British law.
    So whether I mention the slight memory issue or not won't make much difference but I do understand your point and in hindsight probably better not to mention it ,but not a big deal in my case. I appreciate you pointing it out.
     
    Last edited: Feb 8, 2017
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  13. Jesse2233

    Jesse2233 Senior Member

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    Been following your story @Shawn and I'm wishing you the best
     
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  14. Shawn

    Shawn Senior Member

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    Some good news

    Just had a 1000mg (1gram) IV cortico steroid pulse ,which is a massive dose.
    I feel big relief ,I know it won't last too long but it sure feels good until we get one session of pheresis and RTX sorted out ,it will also quiet my immune cells so they will be less likely to attack Rituximab.I am getting this on the private sector with help from 50% coverage insurance.

    The Strange thing is after such a large steroid dose I had no side effects at all no agitation ,no anxiety ,no fast heart rate and I slept like a baby,heart rate stayed at 69,most likely reduction in inflammation in cns,all I have now is some direct effects of the antibodies themselves as the cytokines have been calmed down.
     
    Last edited: Feb 9, 2017
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  15. erin

    erin Senior Member

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    @Shawn, I can't believe, I just felt exactly the same after a 1g diprospan for my herniated neck. All my problems went away, my skin rash disappeared in 10 minutes all the pain, brain fog all away in a days time, I felt normal like I was when I was healthy first time in my life, it lasted 3 months. I tell this to all the doctors I see but they don't think it's important.
     
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  16. aquariusgirl

    aquariusgirl Senior Member

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    You were able to get BUPA or similar coverage w/a pre existing condition?
     
  17. Shawn

    Shawn Senior Member

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    I already had partial insurance coverage before I got sick ,not full thigh but it helps ,the rest came out of my savings
     
  18. Shawn

    Shawn Senior Member

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    They probably know it's important but don't want to admit it so they don't need to spend more time on you.
    For my case I'm not so keen on pulse steroids,their good to stop pre RTX immune reactions or such but they knock T cells and lots of immune cells down so if one takes RTX your only losing B cells and you will still have your pre existing antibodies to viruses floating around in your blood stream,that and the fact that T cells are far more Important for viral control esp for herpes viruses so the loss of B cells is not very risky ,most people do fine after depletion,however chronic suppression of T cells ,dendritic cells macrophages ,NK and phagocytes ect which high dose steroids do if taken often in itself is considerably more risky than just B cell depletion ,if such a situation is experienced together with B cell depletion i.e. Ongoing Steroid pulses and Rituximab together the wide scale immune suppression would be very risky indeed.
    Btw are you in the UK?
     
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  19. erin

    erin Senior Member

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    Yes I'm in the UK.

    In my case I have hypothyroidism due to autoimmune Hashimoto's. My TPOantibodies are 1579.3, normal value shouldn't be more than 6 unit! My ANA titre is positive 1:40 and I have feacal calprotectin >213 normally 10 - 50. I have inflammation all over due to my own immune system attacking me. They referred me to an endo. It's not a thyroid problem, I was diagnosed ME in 2008, 2-3 years after contracting it.

    I believe not only thyroid gland is damaged in my case. I feel my adrenalin glands are caput too!

    Dr. Merleir explains that hormonal problems are secondary, Me is destroying the organs.

    I hope you get RTX and works for you before you get further damage. All the best.
     
  20. Shawn

    Shawn Senior Member

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    How were you treated on the NHS ,how long did you wait for appointments to specialists? What treatments and tests did you receive ?

    Cheers
     
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