Newly diagnosed...... what now in UK

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21

Hi LisaM,

I've been living with CIDP for some years now and I'm just about back to normal (That's my story and I'm sticking to it!).

OK, so I'm not doing things quite as freely as I did before, but I put most of that down to being a bit older, I'm now 71.

Just a quick run through what's happened over the last few years.

I'm a British / Israeli gentile, and live over here in Israel.

A few years ago while visiting our son in the UK, I started to feel that walking, especially upstairs, was like wading through treacle, and also began getting get strange sensations in my fingers.

Back here in Israel, I gradually got worse, to the point of needing a walking frame.

After about 10 days I saw a neurologist who sent me straight to the main hospital in Tel Aviv and they admitted me immediately.

After a couple of days I couldn’t use my arms, so the walking frame was no good.

The working diagnosis was Gillian Berre’s and I was attached to a monitor to make sure that it didn’t reach my lungs.

I got quite a few doses of IVIg and that helped so after 10 days I was discharged to a rehabilitation hospital where they got me walking again.

Back at home I was getting along fine and making progress, when I had a relapse, and this time they diagnosed CIDP.

I was given Solu-medrol, initially 1,000 mg per week, but over the years this has been reduced, and at the hospital today for a 6-months check-up the doctor reduced it again down to 300 mg per month. I go in as a day patient once a month and get this as an intravenous injection.

So, I’m doing well and living a normal life.

There is one problem I had with the Solu-medrol. As with any Steroids there is a whole list of side effects, one of which is glaucoma.

Because the list is so long, and I’m an optimist, I didn’t give it too much attention which was a mistake and I’ve lost some lower quadrant vision in both eyes. That’s now under control and shouldn’t get any worse.

As I say, I’m living a normal life. I feel that I’m at about 95% of where I would be anyway taking into account what happens normally between being 65 and being 71.

Hope this gives you some light at the end of the tunnel,

Blessings,

Bob Knight.

22

Hi Lisa,

Your story sounds very familiar, I am also in the UK, female and 37! However, I was diagnosed in 2012 after a very similar frightening time which took 8 months to diagnose. I was diagnosed formally just after I was married so that year was a nightmare! I have also found it more difficult as the situation is very different in the USA to us here, so I've found it hard to get advice, my neurologist not being the most forthcoming. I have found I have had to fight to get anywhere.

I think the best place for specific questions and more sources of info in the UK is GAIN (gain.org.uk), they get back to you pretty quickly and even though it supports a great deal of GBS sufferers, it does have a good supply of CIDP sufferers to ask about issues. If you do want to get in touch please e-mail me. I have had no-one to talk to at all about this, I live in Wales so it's even harder!

My husband was also very confused and scared when I was going through this, it has been a massive change for both of us, we have both had to adapt. I was also very active, working full-time and I have had to learn to change to my limitations. But it can be done. The priority is to get your treatment sorted, it took a long time and a range of side effects etc for me (everyone is different as I'm sure you know), but the sooner this is sorted the sooner you can hopefully halt the damage.

I myself have been left with damage and will never be able to run a marathon or anything, but provided I care for myself I can lead a relatively normal life. If you aren't getting the answers you want then get a 2nd, 3rd, 10th opinion if you have to, I have found there is a great deal of ignorance on the condition.

Hope this helps a bit x

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Hi Lisa I am doing much better! Thank you! the physical therapist said he can see improvement each time I come back! I am doing PT three times a week to work on balance & endurance ready to give up my cane and walk free!
LisaM said:

Hi PastorPaul diagnosed a few weeks before me then. How are you doing now? How was the progress for you after the IVIG?
24

Dear BEM,

I am an undiagnosed 49-year-old woman who is suffering with severe symptoms, which I suspect might be CIDP. I found your story fascinating because it's been so many years and you are still dealing with this illness. You say that eventually you became incapacitated for some time. Could you elaborate? So, you were diagnosed with CIDP? HOW long did it take to get a diagnosis and when did you start treatment? And how soon did you improve after beginning of treatment? I am desperate because for the past 6 months I have become increasingly weaker and my legs feel very strange, as if made of wood. I used to be in very good shape and now I can barely walk for 10 min, and after that I am in pain. I do physical therapy, but after that all my body hurts. Also, I wonder if in your talks/research you found evidence that one can get CIDP from certain drugs. I began to experience severe problems with my legs after I started to take Seroquel in August, but am not sure this is the culprit.

Q: is it possible to get to the point of being reduced to use a wheelchair if you have CIDP? I am very scared.

Thank you.

Foxauthor said:

Hi,

I was finally diagnosed with CIDP in 2002 and have been living with it since. I can feel the stress you are experiencing through your writing and am here to say that, although it seems like the end of the way of life you have had up until diagnosis, you still have a great measure of control over the future. I've learned along the way that there are so many different side of this disease: that people will say things to you that hurt, that doctors will give you all sorts of unnecessary medicines, that you will learn to put on a happy face for friends and family, that you will sometimes feel like you've had enough. Give yourself permission to feel exactly the way you are feeling in the moment, ignore what others say when they look at you and think there's nothing wrong, and always question everything. As the Nevada liasion for the GBS-CIDP International Foundation (GBS-CIDP.org) I get to talk to patients at all levels who are dealing with the same issues you and I face. The best advice I give to them is to keep focused on your health, avoid as much stress as you can, and question everything. Ask your doctors questions, challenge their answers, never accept no, and accept that you may need to change doctors when they can't meet your expectations. Doctor related issues are the most frequent thread I hear from patients, and while there are many good ones who specialize in neurological and auto immune diseases, not all are on top of the most current and effective treatments and are willing to step out on a limb to see that you have access to them.

My journey began over 15 years ago, much the same as yours, and I eventually was totally incapacitated for some time. Yet today I am functioning on my own and helping others get a better understanding of how to live with CIDP. Despite many, many medications and treatments over the years, the one that has been the most effective is IVIg using Privigen. There are several types of IVIg available, but they don't all work for every patient. Having a neurologist that is familiar with IVIg and side effects is the best bet for your future. Even after this many years I receive in-home infusions every three weeks of 50 grams and am, as I mentioned, doing the things "normal" people do. Exercise, meditation and stress relievers will help you stay focused and prevent muscle waste. Diet is also important and should not be overlooked.

Finally, know that there are many of us out there who understand what you are experiencing and can offer a word of comfort when you need it. You are not alone in this journey and no one has the right to make you feel less of a person than you ever were or will become.

Keep talking and sharing...you will find that it helps not only you but them as well.

BEM in Las Vegas

25

Hi LisaM

My partner has followed a very similar path to you, symptoms began in July, referred to neurologist, referred for EMG but crashed before the tests. Is in UK - he is in St Georges Hospital London Neuro-ICU. They class him as a severe CIDP case.

Had a course of IVIG, week later course of plasma exchange, week later another plasma exchange course, finished yesterday. Was on ventilator, no movement from neck down. Came off ventilator yesterday, has movement back in arms (started upper arms a few days ago, now can move hands and a little movement in fingers) also upper legs.

NHS team been absolutely brilliant. He has no private medical so all this done on NHS. 4 weeks ago I knew nothing about CIDP. Such a debilitating disease yet fascinating how modern medicine can manage this.

I wish you all the best.

26

That is wonderful news! By comparison, my friend who started with GBS was totally paralyzed and on a ventilator only 24 hours after a reaction to a flu shot. She remained unable to move anything but her eyelids to blink yes and no. She remained in this state for two years before she received IVIg. It was 15 years ago, but was in the US. She is now the poster child for CIDP and can wait 6-8 weeks between infusions. She walked me through my own journey with CIDP.

The NHS has been wonderful for so many of our relatives who are British. I'm so happy to hear about your partner's progress. He is moving more than his eyelids. That is fantastic! We just have different ways of measuring improvement:)

JanD

Helene said:

Hi LisaM

My partner has followed a very similar path to you, symptoms began in July, referred to neurologist, referred for EMG but crashed before the tests. Is in UK - he is in St Georges Hospital London Neuro-ICU. They class him as a severe CIDP case.

Had a course of IVIG, week later course of plasma exchange, week later another plasma exchange course, finished yesterday. Was on ventilator, no movement from neck down. Came off ventilator yesterday, has movement back in arms (started upper arms a few days ago, now can move hands and a little movement in fingers) also upper legs.

NHS team been absolutely brilliant. He has no private medical so all this done on NHS. 4 weeks ago I knew nothing about CIDP. Such a debilitating disease yet fascinating how modern medicine can manage this.

I wish you all the best.

27

Hi Lisa,

I'm glad you have started to be on the up, it sounds like it has possibly halted.

It took a while for me to get my dosage right, I now have 45g of Gamunex every 6 weeks. I have tried several other doses and IVIG solutions, but I had horrific side effects. Luckily now I seem to be stable, which I think is the best I can hope for. My neurologist told me that the main thing is to halt the damage that CIDP has done and that this is what the IVIG is doing. That seems to be the main thing really, but I hope you get some stability soon, it's horrible, but it doesn't have to be the end of everything, I even work now and can exercise.

All the best :)