Update 48 - HSCT cure for CIDP - Facts (6)

ISOLATION TESTS

Around 3 time a day, a check of your blood pressure, pulse and temperature.  If your BP goes above 130 (higher) or 90 (lower) then they get concerned and if your temp rises, What happens to these affects the doses of medicines they pump into you.

Your weight is also checked at least once per day (most say pre-breakfast).

IV drugs administered after first set of checks, usually 2 bottles (but size/dose does vary). Plus a pack of pills, which are tailored to you for taking 2/3/4 times a day.

Repeat for quite a while, so relax and enjoy!

As you go through the process initially your results will fall, as the new cells take over they should rise.  Below is an example of the different measures, showing them falling after the first three days - this is normal:

If your platelet count drops to below 10 they will need to infuse you with more to avoid any risk of internal bleeding not clotting.

By around day 7 or so (+ or - a few days as everyone is different), that is when your blood cell count drops to the lowest point.  This is known as Neutropenic State (and your hair comes out!).  This is the day you will know the stem cells are working as the count will now start to rise.

Once you Leukocyte levels reach around 1 million, the strict isolation can (or should be) gradually relaxed - as everything is progressing as it should.  This should be around 2 to 3 weeks after the infusion, meaning that some normality can be resumed and it would be possible to come out of isolation and go home (around 1 week or 2 later).  The timescales are up to the hospital/consultants and your individual capabilities.

There are still 3 to 6 months plus of recovery, with multiple hiccups along the way, but this is a major point of advancement and very good.


Notes:  Whilst in isolation, make sure you have plenty to do, after all you are on your own!
             During all this you will feel, weak, dizzy, tired and in a certain amount of pain
             All the numbers etc. will vary between patients

The best advice I've seen through all this is:

KEEP POSITIVE AND SMILE - YOU ARE BEING HEALED!

Update 47 - HSCT cure for CIDP - Facts (5)

The return of the Stem Cells!

This is simply connecting you to a machine and pumping the stem cells back into your body.  Seems to take a while (half an hour to an hour) and then it's over, however the process has an effect on the body (low blood pressure, dizziness, pressure in chest area...).  So it is not painless, just needs to be gotten through.

As an FYI:  They store your stem cells in cryogenic fluid!

Isolation

As stated previously these are just notes taken from a couple of examples, however each patient may vary.

1. In theory all luggage and clothing goes, so you are supposed to be left in hospital gowns only, but it is possible to keep some clothes?
2. Double exterior windows closed and not to be opened at all.
3. Air Filtration systems turned on and all doors out closed except for bathroom and kitchen visits etc.
4. UV lighting in the bathroom, only off when the patient is in there
5. Staff entering in full covering (gowns, masks etc)
6. Shower, once a day
7. Hygiene washes twice a day, one after the shower
8. No toothbrush, just specific mouthwash -3 times daily
9. Limited food types oatmeal, only baby yogurt, no fresh fruit, nuts, vegetables, lots of other limitations that mean bland food
10. Bedding changed each day and room cleaned thoroughly (1 hour to clean the bed - patient in shower during this time)
11. All dishes washed specially
12. No visitors

Having a Wi-Fi connected computer or device and a pre-paid method for access (hospital permitting) is probably a great life-line to the outside world. Also need to ensure this is sanitised.

Update 46 - HSCT cure for CIDP - Facts (4)

Chemotherapy

During the whole process you need what is called an octopus (or mini octopus) - which is a series of tubes and pipes directly connected to your juggler vein.

This allows the drugs to be administered easily.

The chemo is a series of bottles around 3/4 to 1 pint in size, to be administered  during the day/evening.  It seems there are around 7 to 9 and a couple are for protecting the kidneys, plus a mix of pills for antibiotic, antiviral and gastrointestinal needs.

The chemo is administered over three or four days, but other fluids are administered in similar manner to manage the side effects over the next couple of days.

Other pills include:

Cyclophosphamide 200 mg/kg b.w. (SD) for for 4 days with a single dose of rituximab at the end of treatment (Rituximab 375-500 mg/m*2).

These are provided after the main chemo.  There are lots of potential issues with the process, as it is very invasive to the body.  That is why there are a considerable number of anti-chemo drugs supplied to assist.  The process can rate as medium on a pain threshold scales and the body will "ache" plus commonly difficulty in sleeping.

The side effects of the chemo include:

• Loss of hair - which will eventually grow back, but almost as fluff initially and it takes 3-6 months, or so!
• Chemo brain - this effects a significant number of patients from all chemotherapy, but at quite different levels.  The basic condition is loss of cognitive function (mental abilities) and has been proved to exist.  This is considered temporary. however can last for a considerable time after the treatment.
• Damage to Organs - Heart, Liver & Kidney seem to be the main ones that could have issues, though the drugs and monitoring seem to reduce the issues

On a side issue about how many cells need to be harvested before the process can begin.  The absolute minimum appears to be around 1.5 million, with 2 - 8 million being an accepted amount.  However certain organisations want to have lots more than this, which obviously takes a lot more time and pain, due to the extra stimulation.  Numbers as high as 60 million have been reported, but there seems to be no need for it to be this high and have no benefits to the patient (e.g. faster recovery) that has been proven, up to the time of me writing this,

Update 45 - HSCT cure for CIDP - Facts (3)

Once you are accepted (and have paid!) you will start the treatment. Please be aware setting up payment for this type of treatment is NOT straightforward, mostly due to the country (Russia) and the monetary conditions, but also due to the large amounts required and the security checks put in place by banks (it can be rejected even if they have been informed, so have a plan B).

Notes:

• The process itself is not without risk - apparently there is a 1% change of death, but if you have CIDP and it isn't getting cured, then it will only get worse and it could kill you anyway!  
• Also they put tubes directly into your juguler vein - which looks a lot worse than it is (apparently). These they do insert and remove at various phases

Apheresis

The treatment commences with use of a steroid/anti-inflammatory drug via IV (e.g. Solumedrol) - it helps ease the pain from boosting the bone marrow to produce the millions of brand new cells that are needed for the process. The other medicine injected was to reduce the risk of infection (e.g. Neuprogen).

The drugs can introduce difficulties in sleeping and bone pain (which may not be there initially but can come in over time), plus other side effects like your hand shaking.  If you want the full set of sire-effects please look it up on google. Exactly how much pain is felt, seems to be dependent on the patient and their pain threshold - my view would be this should be acceptable, seeing as compared to CIDP and the hope this brings, it must be worth it?

The next stage is getting those new stem cells out of your body!  This is called apheresis.  It is around 5 hours in a day attached to a machine.  Below is a picture of the type of machine used:

It is basically the same type of machine that is used for kidney dialysis.  It draws all your blood out (twice in 5 hours), filters out the new stem cells and puts the blood back.  Apart from having to lie there for 5 hours solid (and the bodily functions that need to be considered) there seem to be minimal side effects.

This is usually expected to last for 2 days, but it can take longer to collect the cells/  It is expected they need over 2 million of the new cells (this is a rough estimate!). Once the process is complete and they have enough cells the patients are given a day or two of rest.

Apparently in some surgeries (e.g. Dr Burt in Chicago) the chemo can be done before the apheresis, this can assist in the production of new cells, but you can get way more bone pain.

The next stage is the chemo....

Update 44 - HSCT cure for CIDP - Facts (2)

Testing for if you are a suitable candidate to have HSCT

If you go to Pirogov, there appears to be minimal actual testing before you go, apart from general conversations/discussions.

A fee is paid for you to have the initial testing (this seems to be around £3,500), but this doesn't include any flights/transfers, which can easily double the costs, plus if you are actually going with someone else their costs of staying.

The tests themselves seem to last for around four days and the main purposes are to understand what your medical age is, if there are any other issues/illnesses that may prevent you from being treated and likelihood to be able survive the process, this relates to the chemotherapy as you have to be "fit and healthy" in order to cope.

Below is the testing sheet from a specific patient:

The above seems pretty standard for CIDP.

The Dr then goes through the results and assesses whether the treatment is suitable for you and as stated above this depends on your biological age.  The next step if you pass is the treatment itself...

Latest news about Pirogov is there is now an 18-24 month waiting list at this facility :-(

Another centre seems to exist in Beijing China:

China Stem Cells Medical Center

They are advertising on the web: China Stem Cell Center

However I have not found a patient with CIDP that has been treated there and so don't have a lot more information about it.

Update 43 - HSCT IS THE cure for CIDP! - The facts (1)

Continuing on from Update 40 (sorry I got distracted)....

What is HSCT?

In simple terms HSCT is using you own cells (rather a lot of them!) to create new cells once the bad ones have been zapped!  There are three main phases to HSCT as far as the patient is concerned:

1. Preparation and collection of cells
2. Destruction of existing cells - via chemotherapy
3. Replacement and recovery - in isolation

A simple picture outlining the process:

For those who want the medical terms/details:

The actual collection of stem cells is known as Apheresis:

Who Treats CIDP with HSCT?

It seems apart from, four listed below no other clinics are performing any HSCT procedures for curing CIDP:

1. In the US (Northwestern) where Dr Burt is attempting to jump through the FDA hoops (and has been for 11 years!) at stage III.
2. In Israel (Tel-Aviv) CITI  - Prof Shirman Slavin (which seems more focused on cancer but does state auto-immune diseases)
3. In Canada (Ottawa) - where there have been a small number of HSCT treatments (59) for numerous autoimmune diseases (including 2 for CIDP) over the past 20 years, however they do not seem to advertise the fact
4. In Russia (Moscow) the National Pirogov Medical Surgical Center under Dr. Denis Fedorenko, this is where people I know have gone for treatment

(If there are any others, please let me know and I will amend this list - this is as much as I can find after fairly vigorous digging - during which I found an article stating someone had contracted CIDP as a result of having HSCT?)

Clinics do treat other conditions (e.g. MS, Lukemia & Cancer) with HSCT; there are some great stories about the recoveries and don't forget that the actual treatment has been known about for over 30 years.

The rest of the (known) World is holding it's collective breath and waiting for the trials in Northwestern to be approved - this is where the comments about Big Pharma not wanting a cure; cloud the issue and I have to agree that 11 years is a long time when other drugs/treatments are approved in 18 months.

It seems that no insurance company will pay for the HSCT treatment for CIDP (again waiting as above) however they do for other conditions.  What people are doing is raising/getting the money individually to get to Moscow to get treated - this is especially happening from the US.

Currently Pirogov can only handle 87 patients a year and newer/better facilities are being opened there as I write.  I don't know how this will impact the number of patients they can deal with.

The next few posts will contain details from existing patients and the facts from their experience to assist others in making decisions about the good, bad and ugly of HSCT for CIDP......

Update 42 - The Lying Toads!

THIS IS BOTH IMPORTANT AND POTENTIALLY WORRYING

It seems that there is general acknowledgement that vaccinations DO increase the risk of getting GBS!

There have been a number of articles related to this in journals throughout the world. Below are extracts from a couple of web sources confirming this:

November 2013: The Liberty Beacon

A new study published in the Journal of the American Medical Association (JAMA) admits that the vaccine widely administered for H1N1,  also known as “swine flu,” is linked to causing neurological damage in the form  of Guillain-Barre syndrome. The findings confirm several earlier studies in both  the U.S. and U.K. that also linked the H1N1 vaccine to severe neurological  damage.

Reuters Health reports that, for the new study, Philippe  De Wals of Laval University in Quebec City and his colleagues evaluated  rates of Guillain-Barre in Canadians during the six months following the initial  roll out of H1N1 in Quebec. Upon review, the team says it observed a definite  increase in Guillain-Barre cases associated with the vaccine.

Liberty Beacon Link

November 2010: Natural News

Despite extensive denial, The Medicines and Healthcare products Regulatory Agency (MHRA) has recently issued a new statement linking the swine flu vaccine with Guillain-Barre Syndrome. Guillain-Barre Syndrome is a deadly nerve disease that may lead to partial paralysis and death. The news comes after governmental claims were issued that the vaccine had passed all of the required tests and was completely safe for worldwide usage. Those who paid attention to the alternative news media, however, have been fully aware of the dangers that go along with receiving a swine flu vaccination.

Natural News Link

Additional references are contained within the articles. Please read and follow the links as it seeems to expose an underlying acknowledgement of increased risks, but not wanting to tell anyone.

There were a lot of stories spread after the 1976 outbreak and the potential increase in having the vaccination and this appears to be happening again! Also it is other vaccines that can have this effect.

As a person who is 100% certain my CIDP was as a direct result of inoculations, this needs to be bought to people's attentions so they can make an informed choice.

Update 41 - More on Pharmaceutical Companies

The more I read and learn about what the most profitable businesses in the world are and how this impacts ordinary people like me and you, who have a "chronic" illness, the more worried I get about motives!

The following two charts are from a you tube presentation on Medical companies:

This first one shows the sales in billions, from 2006, and the breakdown on how it is used.  With Marketing & Admin being twice the size of Research and Development!  Doesn't that just some it up? These numbers seem t have increased substantially over the past 8 years, but from what I can tell, the proportions have remained the same.

What is also very pertinent is the statement in white at the bottom of the chart that states profits from drug companies run at 20% whereas all companies together is 6.5%?  There are graphs around to confirm this is still the difference today -

So why should the pharmaceutical companies change what they are doing and actually "cure" anyone.  They are businesses and doing very nicely (out of us) thank you!

Here is even more proof that the pharmaceutical companies are more interested in keep things going than actually curing people:

Note:  NME - stands for New Molecular Entities - New approaches?

So out of the 93 new drugs approved 75 were "me too" drugs that are doing the same job as existing medications, that is 80%. 12 were new but had no improvement and only 6 were new/improvements on existing drugs. That is just over 6%!

Thus out of the $37 Billion for R&D only $2.2 Billion is delivering new drugs that may be game changers. If you analyse that against profits that is less than 5% and against marketing it is around 3%!!!!

The link to the you tube clip (and plenty of longer versions) is below:
Pharmaceutical Profits

I will get back to HSCT next time......

Update 40 - HSCT IS the cure for CIDP! - Why it is NOT a good idea?

I have just amended my previous post heading, due to a number of factors.  One more reading of really interesting articles. Two that 2 people I am conversing with are going through HSCT as I write.

The details below (and following blog posts) are a precis of their adventures and the facts (as I see them from the UK) about HSCT.

To lay the ground for my future posts and comments below are some interesting facts/statements that come through from the other posts (to set the scene):

1. More and more people seem to be getting GBS/CIDP and there is still "no cure!"
2. If you take the number of people who contract GBS as 1:100,000 and CIPD as 1:,1,000,000 then with over 7 billion people on the planet this equates to 70,000 cases of GBS and 7,000 cases of CIDP per year
3. The large pharmaceutical companies are making a fortune out of these types of illness, so they are not interested in finding cures as their revenue stream would die out (proof below).
4. In the US it costs about $200,000 per year to "treat" CIDP with IVIG. with an estimated 320 million people in the US if 50% of the people diagnosed with CIDP have IVIG treatment and there are 320 new cases per year the money to be made is growing at $32 million per anum.
5. If you worked this out worldwide (again just for CIDP) this is $7 billion per annum - how about that for a bottom line to a company that has to do no further work/research!
6. Assuming the current number of CIDP patients currently resides at around 400,000 (this is low because I am assuming known about and therefore being treated). Then the existing return is $80 billion per annum
7. If you added in the people with GBS who get "cured" after a treatment of IVIG - assuming an average of 1 months worth of treatment this would add another $6 billion to the total.
8. So pharmaceutical companies are getting $93 billion out of this suite of illnesses in 2014 and it is continually growing at around 9%!

Now you know why the pharmaceutical companies don't want a cure! And are willing to spend a lot of money making sure one is not found! 

What makes the above worse is that I am being conservative in my estimates so the number is far higher.  Yes I do know the there are other treatments (e.g. steriods) - which are cheaper, but have far more serious side effects - this is why I've only used 50%. I am also aware there are costs in creating the IVIG solution.

Even if their costs were half the total above, they still make $46.5 billion in 2014 out of GBS/CIDP.

And this is just from one set of illneses where HSCT can help

HSCT has been known about for over 35 years, yet it is still "in trial!/not proven!" why not.......

Update 39 - Is HSCT the answer for CIDP?

Being well aware of the limited success of recovery from CIDP, I have been trying to find out about the muted alternatives such as HSCT (haematopoietic stem cell transplantation) can be seen as AHSCT (Autologous!).

Now there seems to be a lot written about HSCT being a miracle cure and there appears to be a large amount of smoke and mirrors going on, however these claims seem to be promising at best and dubious at worst.  Yes there is proof that trials have successes against all diseases, but there have also been issues.  In the U.S. limited trials appear to being performed, into MS & CIDP etc.  There also seem to be a significant cost to these treatments and significant risks (that are missed by certain clinics/practices).

I have currently found a number of articles/posts that I believe sum up the current situation:

Report from the US June 2013:

 Abstract

OBJECTIVE:

Only 70-80% of patients with chronic inflammatory demyelinating polyneuropathy (CIDP) respond satisfactorily to the established first-line immunomodulatory treatments. Autologous haematopoietic stem cell transplantation (AHSCT) has been performed as a last treatment resort in a few therapy-refractory cases with CIDP. We describe the results of AHSCT in 11 consecutive Swedish patients with therapy-refractory CIDP with a median follow-up time of 28 months.

METHOD:

Case data were gathered retrospectively for AHSCT treatments in 11 patients with CIDP refractory to the first-line immunomodulatory treatments, intravenous high-dose immunoglobulin, corticosteroids and plasma exchange and to one or more second-line treatments used in 10 of the 11 patients.

RESULTS:

The median Inflammatory Neuropathy Cause and Treatment (INCAT) score within 1 month prior to AHSCT was 6 and the Rankin score 4. Total INCAT and Rankin scores improved significantly within 2-6 months after AHSCT and continued to do so at last follow-up. The motor action potential amplitudes (CMAP) improved already within 4 months (median) after AHSCT. Three of the 11 patients relapsed during the follow-up period, requiring retransplantation with AHSCT in one. Eight of the 11 patients maintained drug-free remission upon last follow-up. AHSCT was safe but on the short term associated with a risk of cytomegalovirus (CMV) and Epstein-Barr virus reactivation, CMV disease, haemorrhagic cystitis and pancreatitis.

CONCLUSIONS:

Our results though hampered by the limited number of patients and the lack of a control group suggest AHSCT to be efficacious in therapy-refractory CIDP, with a manageable complication profile. Confirmation of these results is necessary through randomised controlled trials.

Information from DIADS web site into MS

Hope not hype

Despite the best efforts of researchers, stem cells are often portrayed as a miracle cure, and many MS patients who learn about stem-cell therapy from breathless newspaper articles or television features face let-downs. Even the clinicians had to learn some hard lessons in early studies. "In our HSCT clinical trial, we started with patients who had fairly advanced disease, wheelchair-bound or even bed-ridden," says Richard Nash, a specialist in immunotherapy at the Colorado Blood Cancer Institute in Denver, Colorado "and we found that for many of these patients, even after transplantation they are going to continue to get worse."

The outcomes of subsequent trials have been markedly improved by the recognition that patients with advanced MS might have crossed a threshold of nervous-system degeneration beyond which anything short of neuronal regrowth or replacement is likely to fail. This can be a difficult message for individuals with severe MS to hear. "The only time that patients get mad at me is when we don't offer the transplant," says Burt. "It's hard to get patients to understand that this isn't going to help them."

In some cases, patients have pursued treatment at so-called 'stem-cell clinics' around the world, where they pay tens of thousands of dollars to be injected with cells of dubious provenance in an environment with minimal regulatory oversight. These clinics claim to treat any number of conditions with stem cells but offer little in the way of peer-reviewed efficacy data. At least one published report described a patient who developed tumours after a clinic transplanted fetal stem cells, and in May 2011 Germany shut down the XCell Centre, where a young patient died from complications following autologous MSC transplantation. More recently, a case report from a team of neurologists in Arizona described how a teenage MS patient suffered a severe and debilitating inflammatory response during a course of stem-cell treatments at a clinic in Costa Rica. The physicians were unable to determine the extent to which this strong immune response was attributable to the transplant, but they cite this example as justification for restricting experimental stem-cell treatments to clinical trial settings with proper oversight and safeguards. "We are really fighting those clinics," says Martino, who has collaborated with colleagues in a survey of clinical stem-cell research in MS. "We prepared this leaflet that anybody can easily download from various MS society websites, where we explained exactly what stage we're at with the different types of stem cells."

Most stem-cell researchers see cause for optimism but point out that good science and good medicine require considerable amounts of both time and effort. "The stem cell you use and how you use it will depend on the disease you're treating as well as the stage, and it's just beginning," says Burt. "When I first started I thought I'd have all the answers in five years. But it doesn't work that way — it takes time."

YouTube Web Link to a CIDP story

https://www.youtube.com/watch?v=18-HW1A_18g

To me - all this says progress is being made, but there are still issues and not enough is known/proven.  From an outside perspective it is easy to look at all the good news stories and headlines and go rushing to a clinic and signing up for $40,000??? to go through this, to recover from CIDP.  But the headline from the MS story of Hope not Hype sums it up.

Maybe it is because I have got a reasonably normal life back, so I am not desperate to be cured?  Others will think the risks and the costs are worth it - and good luck to them.

If there is more relevant stuff out there, I will include it and I am still digging!

Update 38 - Latest Consultants Visit

Here is a little anecdote that sums up the NHS in the UK:

I have just been seen by my consultant at QA Hospital Portsmouth.  The appointment was for 12:00 in Wednesday.  So I arrived at 11:45 and asked the receptionist if the surgery was running late as I had to drive to north of Blackburn (around 280 miles) straight afterwards and if it was running late I would get a sandwich before so I could get going promptly.  "No - we are running right on time!" said the receptionist.

At 12:05 the consultant came out and said "Mr Harris?" and another gentlemen got up and went with him to be seen!  I looked across at the receptionist and gave her a questioning stare.  She came over to me and said that was his 11:45 appointment and not to worry I was next.  When I queried the fact that 15 minutes earlier she had told me they were running on time, yet the 11:45 patient was already in the surgery and that I had specifically asked, she replied "Well I didn't know how late he was running until the 11:30 patient came out!".

I gave up at this point because there was nothing to gain by stating that she must have known it was running late because the 11:45 patient hadn't gone in near that time (Sigh!).

Obviously this strategy is used to calculate their waiting times as the NHS always seem to point out how good they are, yet every visit I have ever been to has been around half a hour late of when it was scheduled for.

I eventually went in and was seen.  The conclusions of the visit are encouraging:

1. I have become stronger in my foot flexion and ability to push back with my muscles
2. My reflexes are coming back
3. I have feeling in more areas of my feet and legs

I asked about the constant tiredness, especially after doing anything and he responded that this was fairly normal and likely to continue.  I also asked about the sharp stabbing pains in my feet and lower legs, again he said this would continue and there was little that could be done about it, we discussed pills and I said though sleeping pills did help I was not willing to take them because I felt terrible the next morning and long term usage was not recommended.  So hello to 03:00 for a while longer.  I feel that if I could sleep through the night it may improve my general fatigue issues.

He says as I am slowly improving without pills, so unless I had any sort of relapse I would no longer have to see him again, as I was doing the right things and understood what was required.

I do have to go and see a chest expert for further tests on my breathing and Sarcoidosis, so off to the GP's on Monday to get that arranged.

Update 37 - About CIDP & Diabetes

Having managed to acquire both conditions.  I am seriously considering whether there is a link between the two?  When I did my survey only 10% of people with CIDP/GBS said they were diabetic, but how many don't know they are, as it was only found out for me whilst trying to work out what was going wrong.

Especially as a number of the symptoms are exactly the same (regarding sensory loss in the hands and feet).  From the charts put up last year for the US conference, it seems that people like me need to satisfy all 5 conditions and 3 of them could be diabetes:

One of the doctors attending stated he uses 5 points and if the patient has 3 out of 5 then it is CIDP:

1. Progressive course - it is getting worse slowly
2. Symmetrical proximal weakness
3. Loss of reflex - also EMG's
4. High CSF Proteins
5. Demylinating Features

So actually on their scale I'm not sure I have CIDP???!  But I did and still have, due to the severity and the other issues.  Maybe it is another reason why they took so long to find it.

One great bit of news about changing one of my diabetic pills to Lynaglyptin is that I no longer have to stab myself in the fingers to test my blood sugar levels - as neither of the two I am now on can cause hypo's or low's - which is what they are most worried about.  High's kill you slowly, low's kill you very quickly.  My fingers no longer feel like pin cushions and I am not a significant drain on the NHS for the constant use of the measuring strips.

Update 36 - News from the DWP

Firstly any I wish all readers of my blog a Happy New Year for 2014!

I have received a decision from the DWP and to my surprise; they accepted my case without having to go for an appeal. They have kept me on the higher level of allowance for Disability Living - this means I keep the payments for my car. They have reduced my attendance allowance to the lowest level, which is fair enough as I have improved and though I can't lift/move a heavy saucepan, I was expecting them to stop this one altogether.  Maybe I have got better at filling in the forms and putting the relevant information on them.  This keeps me OK for the next 2 years.

I do need to say a big thanks to a lady at the DWP who handled my case in a proper and quick/effective manner, which just goes to prove there are competent people working within the department.

My issue now is which car I drive?  As my brother works for Volvo and I have been getting cars via him for ages and he is retiring soon.  So I have to use my allowance through the motability scheme and it seems there is such a choice of cars and payments it is almost bewildering.  Still it is something to get me interested after Christmas - I will keep you posted as I try and understand the motability scheme (any assistance greatly appreciated!).

I have had an excellent break with my family over Christmas and will be returning to work soon.  I do seem to be better following 3 weeks off work and it has helped, but I am not looking forward to going back.

My GP surgery has a new diabetic nurse, who has this "modern" approach of discussing things to work out whats best.  She was very concerned about my diabetes and when I explained that there were two things I was far more worried about (CIDP & Sarcoidosis) so I really wasn't paying that much attention to blood-sugar levels apart from trying to eat fairly healthily - this didn't go down too well.  Mind you she didn't know what CIDP was - so I suggested she read my blog/web page.  She seemed surprised that after the check up my BMI was 24.5 so in the healthy range.

After my annual check-up and blood tests she has decided to put me on Linaglyptin - which assists in the production of Insulin - in theory, but I have to go back in three months to see if it makes a difference, as my blood-sugar levels were around 9 which she says is high, but gave me different information about acceptable levels that the previous nurse or the doctors or my father - who has had diabetes for over 20 years).  She states that 4-7 is normal and not 8 or that the level will be higher first thing in the morning.  Just to confuse things I have taken my blood with the analyser I have and obtained readings of 2.0 in my left ring finger and 11.2 in the right (all within 1 minute)!  So do I average this out to get 6.6?  It just proves how inaccurate these machines are.