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Diagnosis Timescale

Question

What is the maximum timescale for obtaining a confirmed diagnosis of GBS, etc following initial onset of symptoms?

For instance, would protein levels be expected to have returned to normal after a few days or weeks or is it still possible to diagnosis GBS through lumbar puncture / EMG at a later stage (i.e. several weeks or even months after onset)?

Answer

I am not sure I can give you a simple answer to this.

  • Lumbar puncture – CSF protein levels can occasionally remain normal throughout the illness although they usually rise over the first couple of weeks.
  • EMG – The electrics usually remain abnormal for many years / permanently although in an occasional case they return to normal quickly.

Question

Could a person develop GBS as a result of a throat infection or other infection after a period of more than 3 weeks? If so, is there a cut-off limit after which it could be said that the GBS was not in fact triggered by having had an infection?

Answer

Peak time lag about 10 days but up to 4 weeks probably possible.

Diagnosis Other neuropathies

Question

The person involved has developed a ‘rare neuropathy’, being on life support for a prolonged period (9 weeks) following a serious car accident. The neuropathy has resulted in almost complete paralysis and he has both axonal damage and myelin damage. Might this be related to GBS or a variant?

Answer

This is probably “critical illness neuropathy” which is a separate disease that occasionally gets confused with GBS and vice versa.

Diagnosis CIDP & AIDP

Question

We have come across two people this week who have been diagnosed with CIDP and AIDP concurrently.
Is this something you’ve encountered?

Answer

A few patients get recurrent attacks of GBS with recovery in between. I suspect this is all one disease not two but It is what you call it is tricky.

Treatment CIDP IvIg & ScIg

Question

One of our members with CIDP is trying to get his local NHS Trust to allow him to have subcutaneous immunoglobulin rather than his regular treatments of intravenous immunoglobulin for which he must attend hospital for several days at a time.

He feels that switching to ScIg would improve his quality of life, but so far he isn’t making any progress. He would like to produce evidence in support of his argument from a cost perspective, and was wondering whether there are any figures available which he could draw upon?

Do you know of any statistics regarding effectiveness or cost that may help in pursuit of home treatment? 1. A number of centres are piloting sc Ig for CIDP including our own. It seems just as effective as the IV preparation but the correct dose of SC Ig is a bit of guesswork and patients receiving high doses of IvIg may have problems getting equivalent doses SC because of volumes required for injection. Your patient needs to talk this through with his nearest local expert. Figures on cost are difficult to correctly ascertain since there are fixed costs to having a CIDP service and bed usage may or may not be easily used for alternative treatments. i don’t think the cost argument is strong but the patient convenience argument is a good one.

2. SCIG should be about the same as IVIG in terms of drug cost. There is a theoretical basis to there being a 20-30% increase in dose for SCIG but most patients stay on the same dose. The hardware for SCIG at home is more costly and there are costs for delivery, but there are also the costs freed up in terms of health service beds. It is probably about cost neutral

Answer

1. A number of centres are piloting sc Ig for CIDP including our own. It seems just as effective as the IV preparation but the correct dose of SC Ig is a bit of guesswork and patients receiving high doses of IvIg may have problems getting equivalent doses SC because of volumes required for injection. Your patient needs to talk this through with his nearest local expert. Figures on cost are difficult to correctly ascertain since there are fixed costs to having a CIDP service and bed usage may or may not be easily used for alternative treatments. i don’t think the cost argument is strong but the patient convenience argument is a good one.

2. SCIG should be about the same as IVIG in terms of drug cost. There is a theoretical basis to there being a 20-30% increase in dose for SCIG but most patients stay on the same dose. The hardware for SCIG at home is more costly and there are costs for delivery, but there are also the costs freed up in terms of health service beds. It is probably about cost neutral

Vaccinations and injections

Question

Are you aware of injections acting as a potential trigger for GBS?

Answer

No I don’t think they do.
I can’t see this would be a problem.

Variants MMN/MMNCB

Question

Could you give me any information please about differences in diagnosis and treatment between MMN and MMN with conduction block? Is it a very different condition or are there similarities?

Answer

It is the same disease. Conduction block is typical but sometimes you can’t find block but are still convinced that it is MMN.

Immune system CIDP

Question

I have CIDP and I seem to have contracted a virus affecting my nose/throat. It seems to be lasting and I’m knackered! I don’t totally understand the effect on the immune system, do you know if any colds etc. last longer with CIDP?

Answer

There is no evidence that the immune system is inhibited in CIDP and in general the hypothesis is that it is overactive. Some general diseases such as diabetes and paraprotein disease may be associated with CIDP but cause immuno-suppression themselves.

Treatment CIDP

Question

I have a friend with CIDP. I have known him for 8 years now, and it hasn’t got any better. He has been diagnosed and has regular treatment. I was just wondering if anyone knew if stem cell treatment works? I think something was mentioned in the US about it curing people with CIDP. Naturally though, every ones case is a little different. Do you have any information on this? Anything would be useful. I look forward to hearing from you.

Answer

Gene therapy, or stem cell therapy may work at some point in the future, but at the moment is miles away in the treatment of GBS and CIDP. It is inadvisable to seek experimental therapy outside the UK

Treatment CIDP WBC count

Question

Would you expect someone to be refused IvIg if they have an elevated White Blood Cell countunder, or might it be worth seeking an alternative referral?

Answer

I think this is a query for a Consultant or GP. There are some serious conditions that raise your white cell count and some very minor ones. I cannot comment without some more info. It would be better for the patient to ask the GP for clarification.

Pregnancy CIDP

Question

I have had an enquiry from a young woman recently diagnosed with CIDP. To date she has been treated with IvIg and steroids. I have sent her the information we have available, but she wants to know more about becoming
pregnant with CIDP as she and her husband were hoping to start a family soon.
From re-reading the CIDP literature and the GBS and Pregnancy booklet, my understanding is that having CIDP and receiving IvIg should not be a hurdle to a successful pregnancy, but that levels of weakness, etc should be considered if deciding to go ahead with starting a family, as with GBS. Not so sure about steroids?
Is there anything else specifically connected with CIDP that should be taken into account?

Answer

What you have gleaned is correct : Ivig is ok in pregnancy, steroids much more of a concern. She needs to discuss this with her neurologist though so advice can be
tailored to her own individual needs.

VitB12 deficiency

Question

Is there any information linking VitB12 deficiency with Guillain Barre Syndrome?

Answer

Although there are a few similarities between some of the symptoms of GBS and those of Vit B12 deficiency, there is no link between the two conditions.

Symptoms Dry mouth

Question

I am working with someone with GBS who is mainly better but still suffering from dry mouth. Is there any research on this following GBS and ways to help the problem?

Answer

There is nothing documented.
Your colleague should consult their GP in case their dry mouth is caused by an underlying health problem.

Treatment FES

Question

I have just heard of Functional Electrical Stimulation (FES) as helpful for MS sufferers to aid walking.
Do you know if this has been tried for CIDP?

Answer

FES is not usually very good for a peripheral nerve problem but better for MS and central nervous system disease.

Residuals Trembling hands

Question

Had GBS two and a half years ago and has ongoing problems with trembling hands. Although Parkinson’s has been ruled out, he has been unable to determine the cause. Are you aware of this as a residual effect of GBS?

Answer

You can get tremor post GBS and he needs to discuss with his neurologist.

Other autoimmune diseases

Question

A gentleman who had GBS earlier this year has now been diagnosed with another autoimmune disease, Bullous Pemphigoid. Is there any connection that you know of, or is it, as they suspect just bad luck?

Answer

Probably just bad luck

Recurrence Genealogy

Question

The GP I saw gave me interesting information about the gene that predisposes one to GB and said if I ever did get it again, it would be milder.’
Is there any evidence that this is the case?

Answer

No

Surgery CIDP

Question

I have had a call from a gentleman with CIDP who is due to have a triple heart bypass very soon
He isn’t receiving IvIg (doctor said advisable to wait until after the surgery)
I mentioned that the anaesthetist needs to be aware that he has CIDP
In your opinion is there anything else that needs to be considered, or will CIDP have no effect on the procedure?

Answer

Shouldn’t have much effect unless he is on steroids as well.

Treatment CIDP IvIg & ScIg

Question

One of our members with CIDP is keen to take part in a trial for subcutaneuos IvIg, and was wondering how to find out whether there is any intention to trial sub-cutaneous Ig treatment in his area?

Answer

1. He could try writing to the head of his local immunology service, who have far more patients on ig and usually lead
the way on home services in most areas of the country where s/c is up and running

2. He needs to discuss this with his neurologist who may be able to refer him for initiation of SC treatment usually via immunology. We have just started using sc ivig on a small number of our patients but there are logistic problems with setting it up and not all centres will be able (or will want) to do it immediately.

Variants Miller Fisher

Question

My husband was diagnosed with the above disease [Miller Fisher] about 30 years ago. He is now 85 and suffering with a form of leukaemia. His eye which was affected at the time is causing a lot of problems with build up of fluid beneath and his eyesight in this eye is really bad. He was told that there is a sheet behind the eye that should be smooth, but in his case is wrinkled. Is this a legacy of the miller fisher syndrome?

Answer

No, this is not related to Miller Fisher.

Triggers Campylobacter jejuni

Question

I contracted AMAN in Sept 2009. What is interesting in my case is that myself, my wife and my two children all contracted campylobacter food poisoning after eating the same meal in Spain whilst on holiday, but I was the only one to get GBS some 10 days later.

Answer

The situation you describe is not unique – indeed it is rather typical of multiple Cj [Campylobacter jejuni] infection outbreaks that only a small proportion develops GBS.

Vaccinations Holiday

Question

Holiday My husband was diagnosed 4 years ago with GBS. We are now travelling to Malaysia and Indonesia for one month this autumn. I wanted to ask if you have any recommendations regarding which vaccines to avoid. My doctor said that she understood it was only ‘live’ vaccines that may cause a problem. We are looking at Japanese encephalitis and Rabies injections. Can you give me any guidance?

Answer

1. In general the risk of any vaccine causing a problem is very small according to the latest studies. I don’t think there is evidence that live vaccines are worse than any others but this depends on many things including medication and general health and background illness.

2. The patient has done the right thing in asking their own GP as they are best placed to give individual advice re risks and benefits (eg with the knowledge if there was any vaccine trigger for the patient’s own gbs in the first place)

However both rabies and jap b encephalitis vaccines have been described as very rarely triggering gbs (in
previously healthy people), as is the case for many vaccines.

Our own survey of ex gbs patients did not uncover any ex gbs patients who have been given either vaccine, so there
is not much informaiton out there as to what happens in ex gbs patients given the vaccines.

Both illnesses can be fatal though, so I think if it were me I would have the vaccines if they would be advised for
visitors to the areas in question

Residuals Psychological

Question

Is there a known link between GBS and mood swings or aggressive behaviour in adolescents?

Answer

No known connection apart of course from the psychological effects of the past illness especially if severe.

Treatment GBS IvIg Thickening of blood

Question

We have had a question regarding a patient who suffered brain damage after receiving immunoglobulin (treatment was stopped due to kidney problems), and they are asking
a) whether the abnormalities in the brain could in any way have been caused by immunoglobulin
and
b) can receiving immunoglobulin cause ‘sticky blood’?

Answer

IvIg can very occasionally cause a stroke.
Yes blood can be sticky.

Treatment Mild GBS IvIg

Question

Diagnosed approx 3 weeks ago and discharged after one week. He didn’t receive immunoglobulin treatment as he remained able to stand. In a lot of pain, and is unable to sleep because of it.
Might it still be beneficial to consider immunoglobulin treatment, even at this late stage?

Answer

There is no good evidence that giving IvIg to a mild case 4 or more weeks post onset would be beneficial.

Surgery Anaesthetic Autonomic nerve damage

Question

Expecting a second hip replacement op. There was nothing mentioned when she had the first op, but she has a new surgeon now, who has suggested that having an anaesthetic can be problematic following GBS, and may trigger another episode

Answer

There is no strong evidence for this and any risk would be very small. The anaesthetist has to be aware of the previous GBS in case there is any residual autonomic nerve damage.

Vaccinations Flu

Question

Wondering if my unexpected decline was in any way connected with the flu jab I had in early October. I’ve had this injection on a regular annual basis since about, but never had any side-effects on a previous occasion.

Answer

Having had a flu jab every year since 1993 without a problem it seems unlikely that this a deterioration of past GBS

Immune system After GBS

Question

My boyfriend had GBS 3 years ago and I have just been told I have the flu. I wanted to ask you guys when you think it may be safe to have any contact with him again due to his weakened immune system.

Answer

There is no added danger of catching the flu in patients that have recovered from GBS unless they have some other reason for immunodeficiency.

Pregnancy Post GBS

Question

We’ve had an enquiry from a lady who had GBS 13 years ago. She wants to start a family and is worried that she will develop GBS again. In your opinion, can changes in hormones trigger GBS and is it more likely if you have had it before?

Answer

Recurrence of GBS in pregnancy must be vanishingly rare. You can say that almost all patients that get pregnant post GBS have deliveries no differently than anyone else. I don’t think this is a significant risk worth worrying about.

Question

I was wondering about an epidural as I know I have read up that sometimes doctors advise against this due to GBS but I wondered why this was

Answer

There is no reason why an epidural shouldn’t be given if it is deemed appropriate and beneficial for the usual considerations, just as for anyone else. We have never heard of a case of an epidural triggering GBS.

Many doctors are unfamiliar with GBS and will err on the side of caution if they can’t give a definitive answer. Our information is based on a great deal of knowledge and experience drawn from several of the UK’s leading experts in GBS and CIDP. Pregnancy can bring with it all sorts of complications and surprises, but there is no reason to believe your pregnancy and delivery will be any different from anyone else’s.

Treatment CIDP

Question

Is there any evidence that treatment via corticosteroids, plasma exchange or IVIG can stop the loss of the myelin sheath or axon damage? If the answer is yes, how is this confirmed, as I am told that the nerve conduction studies are not accurate enough to measure any improvement or deterioration?

Answer

We believe that active treatment of CIDP does lead to repair and regeneration of nerves and myelin although this is an inference and has not been proved on histology. Some patients make a full recovery with treatment and have no deficit so presumable in them the repair process has been very good. Electrophysiology will often suggest improvement in patients that do not become asymptomatic but there is a poor correlation between function and electrical measurements.

CIDP IvIg Double vision

Question

One of our members with CIDP has been struggling with double vision for the last few days following his latest treatment of IvIg. He has been referred by his optician to an ophthalmologist, but unfortunately, has to wait two weeks before he can be seen. He has been receiving IvIg for two years, and this is the first time the problem has occurred. He has emailed his neurologist but hasn’t had a response yet, and in the meantime was wondering if it was something we were familiar with, as he is quite concerned.

Is double vision a recognised symptom of CIDP / treatment with IvIg, and if so, is it likely to be long term or something that should pass relatively quickly? Is it something that spectacles could help correct or is he stuck with it for as long as it lasts?

Answer

He does need to be seen. It could be a viscosity problem with the ivig. It may well settle. Sometimes prism glasses help but a diagnosis is needed.

GBS and other autoimmune diseases

Question

I had GBS roughly 10 years ago and now have Myasthenia Gravis. Is this common?

Answer

Although GBS and Myasthenia Gravis are both autoimmune diseases, they are not linked; GBS affects the peripheral nerves and MG affects movement muscles. Having had one of these conditions doesn’t make you any more or less likely to develop the other.

GBS and Statins

Question

Can the use of statins cause GBS?

Answer

There was a report [circa 2004] of a disorder resembling Guillain-Barré syndrome, occurring on initiation of simvastatin in a 58-year-old man who had experienced a similar but milder episode after starting pravastatin 6 months earlier. This case suggested that acute polyradiculoneuropathy may represent a rare but serious side-effect of statin treatment. Dr Yusuf Rajabally, a member of our MAB, wrote an article on this case which was published in Muscle & Nerve magazine in November 2004.
Dr Rajabally states that this was an interesting but isolated case. There is no evidence that statins can cause GBS, especially considering the very widespread use of this drug, and the rare reports as the one published in 2004.

Treatment of autoimmune diseases

Question

Can antigen-specific immunotherapy help in the treatment of GBS, CIDP and associated inflammatory neuropathies?

Answer

Tolerance has been an attractive target for treatments for chronic autoimmune disease for some time. The problem is that you need to have an antigen that causes the disease and we still do not have that for CIDP. GBS is perhaps too acute for this to be a very successful strategy.

Treatment CIDP and HSCT

Question

(Sept 2014) Would you be able to tell me if there are any trials in the UK being undertaken regarding CIDP and HSCT (Hematopoietic stem cell transplantation)

Answer

Not as far as I know but there have been cases entered in the USA

Treatment HSCT

Question

What is HSCT?

Answer

Haematopoietic stem cell transplantation is also known as blood and marrow
transplantation (BMT). It is used to treat a wide spectrum of disorders. It is broadly
divided into two main groups: autologous and allogeneic transplantation.
Allogeneic haemopoietic stem cell transplantation (HSCT) is used to treat carefully selected patients with a range of malignant and non-malignant blood-related disorders and other specific disorders of the immune system. It involves replacing the bone marrow stem cells of a patient following high-dose therapy, with stem cells from a tissue-type matched or mismatched donor.
Autologous transplantation uses the patient’s own stem cells, which are harvested prior to high-dose therapy. It enables the patient to be treated with doses of chemotherapy which are higher than would be possible without subsequent replacement of the harvested cells, because the therapy destroys the patient’s remaining stem cell tissue.
The scientific evidence for these treatments is not clear cut, relying on clinical expertise and consensus. This policy will promote equity of access to treatment in England. It confirms the indications for which the NHS CB has agreed routine funding and the route for obtaining funding for conditions outside this policy (abstract taken from http://www.england.nhs.uk/wp-content/uploads/2013/10/b04-p-a.pdf)

Treatment for pain FSM (Frequency specific Microcurrent)

Question

Has anyone here heard of FSM – frequency specific microcurrent? We’re honeymooning in America and the doctor we spoke to at Urgent Care to get extra medication said we should look into it because its used here for people with fibromyalgia amongst other things, and ‘resets the nerves’….too good to be true?!

Answer

FSM is not a treatment that is recognised here in the UK, and there is no evidence that it is a genuine or proven form of treatment.

Radiotherapy and the immune system

Question

GBS diagnosed 3 years ago but recently treated for breast cancer. I’ve had an operation to remove the cancerous cells but now face radiotherapy. I would like some advice as to the suitability of such treatment on my immune system. Very few health professionals know of GBS and its effect so can you help me please?’

Answer

Not aware of any specific contraindication for radiotherapy

GBS ICU

Question

The family has been told that; ‘as there has been no improvement and the heart is weak, that if he arrests, they will not resuscitate’
They are very distressed by this, and want to know what they need to be asking the doctors. In very general terms, is there any further advice we can offer? We don’t know if the ‘weak heart’ is due to an underlying condition, or purely down to GBS. In terms of there being ‘no improvement’, the timescale (approx. two months post diagnosis) might suggest he is still in a plateau phase and may yet hope for recovery?

Answer

It is difficult. If [GBS was diagnosed two months ago] there is still a good chance of recovery and I would be asking the doctors whether they think he has a poor chance of recovering and if so why.
This would then inform any decision not to resuscitate.

Surgery

Question

Dad was diagnosed with GBS 6 weeks ago. His initial problem was his heart valves which we have since postponed the operation. My question is how soon can he be operated on. Can they operate with him having GBS. or is that out of the question. If he does not get new heart valves he will slowly deteriorate and possibly pass away.

Answer

There is a balance here between how much he needs the heart surgery. It would be better to wait until he has recovered or at least 3 to 6 months if his heart disease can wait that long?

GBS possibly triggering other conditions

Question

We have received a request for information from the mother of a 16 year old who had GBS in 2002 at the age of 3. Since then, she has had a number of health issues, and is currently trying to establish whether she may be suffering from a form of PoTS or Dysautonomia, the symptoms of which started after a vaccination for HPV at the age of 12. She wonders whether GBS could have potentially been a trigger for PoTS as other neurological conditions such as multiple sclerosis and Lyme disease are apparently recognised triggers.

Answer

This is pretty difficult to answer. GBS can cause persistent dysautonomia but it is very rare. I am not aware of a post GBS POTS as such.

Triggers Glandular Fever

Question

Has GBS been linked to glandular fever with regard to reduced immunity as glandular fever stays in the blood for two years? I had it 9 months before GBS

Answer

‘When we talk of associations we infer that there has been a clear temporal relationship between the illness and the GBS, so typically in the 4-6 weeks prior to GBS. Therefore I would say that a 9 month gap is outside the window where any epidemiological link could be established.’

Triggers Humira (treatment for rheumatoid arthritis)

Question

Asking for advice on Humira (generic name adalimumab) for Rheumatoid Arthritis as worried it can cause GBS to recur.

Answer

This is a difficult one and I would be cautious about using Humira which is associated with occasional cases of CIDP and MMN. If absolutely essential and balanced against other side effects yes but otherwise no.

Related conditions Autonomic Dysreflexia

Question

One of our members has asked a question about a possible correlation between GBS and Autonomic Dysreflexia. She had GBS and then later developed Autonomic Dysreflexia, and her neurologist indicated they were linked. We hadn’t come across this before, and as far as we can tell from information available via the NHS website, the condition appears to be caused by paralysis from having had a spinal cord injury. In your experience, is it possible that paralysis as a result of GBS could trigger this condition?

Answer

For those patients in ITU with GBS the involvement of the autonomic system is not uncommon, and can be tricky to manage. I haven’t personally seen anyone with GBS, who got better, and then went on to have autonomic problems which were new – in the sense that GBS usually is monophasic – but I do have other patients who have more chronic neuropathies with an autonomic component. The timings and current thinking of what the patients diagnosis is is rather key here.’

IvIg versus Plasmapheresis

Question

Is plasmapheresis more effective than IvIg or the other way around?

Answer

Plasmapheresis and intravenous immunoglobulin (IvIg) produce similar results, and neither is considered to be more efficacious than the other. Several years ago, plasmapheresis was the usual treatment, but IvIg is now more common as it does not require specialist equipment and is far simpler to administer. However, as immunoglobulin thickens the blood slightly, plasmapheresis may be considered if there is an underlying medical reason not to use immunoglobulin such as a history of kidney failure or heart disease.

Whichever is used, both plasmapheresis and IvIg are believed to be most effective in the early stages following diagnosis. Both are generally thought to have little or no effect after the first couple of weeks, unless the patient continues to deteriorate.

Unfortunately, although either one of of these treatments may help, on average halving the duration of the illness, neither plasmapheresis nor IvIg carries any guarantee of having any effect at all, and the syndrome simply continues to run its course. Sadly, we know that around 15% of patients will experience severe and perhaps irreparable nerve damage regardless of whether or not they receive IvIg or plasmapheresis in the early stages following diagnosis, and regrettably, those with a diagnosis of AMAN stand a poorer chance of achieving a good recovery than with non-axonal GBS.

HBOT Hyperbaric Oxygen Therapy

Question

I have been asked whether here is any evidence to support the use of HBOT in the treatment of and recovery from GBS. My understanding is that there have been no reliable studies done to date, and was wondering whether you are able to comment?

Answer

I don’t think there is any evidence this helps at all. If there was then we would all be using it.

Reactions to ivig

Question

I have had CIDP for many years. In July I was given my 1st infusion of immunoglobulin and had a bad reaction after the 3rd dose and it was stopped. Having seen the neurologist we tried again over 5 days at a much slower rate. Day 1 o.k day 2 sent to the Acute Assessment Unit with Sinus Tachycardia. Neurologist now wants me to see a cardiologist, have been waiting 3 weeks, rather a worried. Have you ever heard of this before?

Answer

Several side effects of intravenous immunoglobulin G (IVIG) therapy are known, but it has never been reported to be associated with cardiac rhythm abnormalities other than sinus tachycardia. Cardiac rhythm abnormalities may be exacerbated in individuals with pre-existing cardiac problems by IVIG infusion, and such patients should be monitored closely during IVIG administration.
Journal of Pediatric Hematology/Oncology 1997 May-Jun;19(3):254-7.
https://www.ncbi.nlm.nih.gov/pubmed/9201151

Question

What is the maximum timescale for obtaining a confirmed diagnosis of GBS, etc following initial onset of symptoms?

For instance, would protein levels be expected to have returned to normal after a few days or weeks or is it still possible to diagnosis GBS through lumbar puncture / EMG at a later stage (i.e. several weeks or even months after onset)?

Answer

I am not sure I can give you a simple answer to this.

Lumbar puncture – CSF protein levels can occasionally remain normal throughout the illness although they usually rise over the first couple of weeks.

EMG – The electrics usually remain abnormal for many years / permanently although in an occasional case they return to normal quickly.