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

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1

Hi All,

I am so glad to have found this site I have just in the last few weeks been diagnosed with CIDP and I am scared silly. You can tell hopefully by my name I am female and I will also say I'm 37.

Luckily for me my diagnosis has come quite quickly, I started with numbess and tingling in my fingers and toes in July 2015 which spread to my hands and up my legs over the next few weeks. I saw my GP early September and they thought it was a vitamin B12 defficiency based on blood results and started me on B12 injections. The pain kicked in a few days after the injections started and the numbness carried on spreading. The GP was great and as soon as my tongue and face started to tingle and go numb they referred me to a Neurologist. Luckily for me I have private medical insurance through work and saw one within a week. Over the next few weeks I was getting worse, MRI scan of brain and neck showed no MS lesions although it did show arthritis in my neck, nothing that would cause the syptoms I was getting though so onto Nerve conduction studies.

Went back for the nerve conduction studies results on 5th November having got to the stage where I was falling over and all up my legs was numb and up to my elbows. When he saw the deteriation the consultant decided to admit me to the local NHS hospital the following day for tests.

2 weeks later on 19th November I was discharged. In that time I had more MRI scans which showed MR thickening and enhancement of the cauda equina (whatever that means), more nerve conduction tests which showed I had worsened by a lot in the 3 weeks between tests. CT scans, countless blood tests and a lumbar puncture which showed elevated proteins. While I was in I had IVIG spread over 3 days and came out the day of my final dose. The numbness is reducing and I am slowly building up some strength again although I am now tingly and burning instead of numb at least I can feel something.

The question is what now????? The consultant wants to see me this week but as with all CIDP diagnosis they do not know how it will affect me, how I will respond to the IVIG etc. I know noone can give me a definative answer but does anyone have any idea what the treatment plan usually is on the NHS? My medical insurance will cover acture flare ups but not ongoing care for a chronic condition so I am going to be reliant on the NHS and how they want to handle it all. How long does the IVIG take to work fully? how long is it likely to last?

From a personal prespective my partner has been fantastic, he only moved in with me in August has lost his father in the last few months and now has this on his plate. I am scared and I know I am not easy to live with at the moment, I'm tired, snappy and worried about how CIDP will affect me physically and if I can deal with it. Prior to this I have always been accident prone but never anything more than broken bones and I was working full time and very independent. Now I can barely get up the stairs, shower, clean and am off work for the foreseeable future. I feel so guilty that he has got to deal with this and know that I am pushing him away. I am trying not to but something seems to take over and make me want to do things for myself just in case he decides I am too much hassle and leaves me. I love him to bits and know he loves me but I can't stop myself pushing him away even though I know it makes it more likely he will give up on me. Am I going mad as well?

There is probably loads I have missed but my memory is shocking now. Thank you for reading and if there are any questions or words of advice it really is appreciated.

2

Hi LisaM

I can fully understand your fears and apprehension. I had a very similar diagnosis to you early on this year. My numbness started in January and by April I could hardly walk. It also took a while to land on diagnosis. Once I started IVIG treatment the turnaround has been remarkable. I found physical therapy to be very effective, combined with IVIG. It took about 3-4 months to regain strength, but I'm still improving. I have IVIG once every 3 weeks, combined now with immunosuppressants. Stay active and positive. I'm confident things will improve for you.

Minagish

3

Lisa

I went through pretty much the same series although it did not reach my face/neck. IVIG did not work for me at all but solumedrol did -- I am about 85 percent recovered, can fish and hike and mtn bike and have almost no pain. But for everyone its different they say...

Carl

4

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

5

Hi lisa

Im in uk and whilst currently not getting IVIG as it wasnt really working i was receiving it through NHS i was having it done in UCL on a day unit .I was offered it locally but i had met someone at a more local hospital whilst getting one of the nerve conduction tests done, he having his ivig in a waiting area as there was no beds well there was but they needed it for a lumber puncture so was asked to move out for a while so decided to stay in the purpose built place at UCL, they put us up in a hotel across the road and unit was open 7-7 so you came and go but sooner you were done sooner you can get home.

The treatment was first class, i was asked when i thought i needed another session , they suggested when but was under no pressure to stretch them out or such like , was pretty fantastic to be in a place where the people who had CIPD were just the normal run of the mill patients there as they had some truly wonderful people with some truly awful conditions all being treated there so was really nice to be where people knew about the condition and you didnt have to explain it to your DRs.

I heard whilst there are other infusion places dotted about so may be one closer to you but whilst the NHS really struggled to find out what was wrong once they knew they were fantastic so hopefully they will be for you too.

6

Thank you all.

I have a list of questions ready for my appointment tomorrow.

The IVIG I had was Privgen Foxauthor and I think I am starting to see some benefit from it. I have good and bad days today has been a good day and feeling a bit more positive about everything. Axing what managing to sleep for more than an hour at a time does isn’t it?

Pampers did you automatically get the option of IVIG or did you have to try steroids? I will ask tomorrow where they do the infusions here I think it might be a side part to the neurology department of the hospital. It’s good to hear some positive about it not being too much trauma to get the IVIG especially when it seems to be working for me.

I will update after my appointment tomorrow thank you all for the moral support just knowing not alone us a help in itself.

7

Where is UCL? My husband is determined to move back to the UK. I would love to move too, but he is the citizen, not me. I I would be on a long term Visa and would be with the NHS. I get my IVig infusions in the US for free under medicare and my supplementary insurance. That will go away when we move. We are looking for places to live about an hour away from Maidenhead and Basingstoke where his relatives live.

Thank you.

JanD

pampers said:

Hi lisa

Im in uk and whilst currently not getting IVIG as it wasnt really working i was receiving it through NHS i was having it done in UCL on a day unit .I was offered it locally but i had met someone at a more local hospital whilst getting one of the nerve conduction tests done, he having his ivig in a waiting area as there was no beds well there was but they needed it for a lumber puncture so was asked to move out for a while so decided to stay in the purpose built place at UCL, they put us up in a hotel across the road and unit was open 7-7 so you came and go but sooner you were done sooner you can get home.

The treatment was first class, i was asked when i thought i needed another session , they suggested when but was under no pressure to stretch them out or such like , was pretty fantastic to be in a place where the people who had CIPD were just the normal run of the mill patients there as they had some truly wonderful people with some truly awful conditions all being treated there so was really nice to be where people knew about the condition and you didnt have to explain it to your DRs.

I heard whilst there are other infusion places dotted about so may be one closer to you but whilst the NHS really struggled to find out what was wrong once they knew they were fantastic so hopefully they will be for you too.

8

hi Lisa,

i'm in the uk too,reliant upon our excellent NHS and was pretty much where you were 8 years ago.I am approaching my 100th monthly top up of IVIG.I am aged 61 and have worked as a public servant all my life,mental health nursing,the civil service and local govewrnment.I stood for council 2 years ago and have been an elected councillor for 12 years before,at the brunt of the Poll Tax riots!

My experience is this.I remember the relief i had when i got the diagnosis-great,they know what the problem is now so can deliver treatment and as with everything early intervention is crucial and you've got that in your favour too.My EMG revealed 83% muscle weakness-now I spend my time protesting and demonstrating-I just walked 3 miles through Manchester at one.I like you have a supportive partner,that's one hell of an advantage.It did get the better of me 3 years ago and I had to give up a job I loved at the local council.I couldn't keep asking my boss,I need to lay down for an hour or 2.I understand from my MS friends I meet up every 4 weeks with,it''s a lethargy we seem to share with them.I have learnt that you can't fight it,you must do what your body is telling you to do.

It went like this first off.My neurologist told me he was going to "soak" me in IVIG for about 10 days and then give me 4 weekly top ups of 50 gms IVIG as I had no allergic reaction and tolerated it well-remember to always hydrate during treatment although a safe dose,according to my new neurologist is 100mgs.Nothing happened after the 1st weekly top up but after the 2nd-remember it took me 2 months + to have a beneficial effect.

I recall feeling a wonderful sense of recovery about a week after the 2nd monthly top up.I will never forget saying to wife for the first time in many months-I am walking up the stairs.She shrieked remembering the time it took her hours to get me out of the bath one time when I was at my worst,and stubbornest.But I did it and have never looked back.As I tell people you can forget about taking up boxing again but life is 100% better.

I still take regular pain relief medication.Like the IVIG treatment,the big message to gain acceptance is like a diabetic with insulin my doctor said you will need this for as long as you live and my pain relief is a mix of codeine,amitryptilline and gabapentin.As I had to retire I became a cannabis cup judge in Amsterdam for a couple of years-I will say no more in respect to the site's rules and the law in the Uk.Unfortunately,although Sativex is available it is only for MS patients and only in Wales.Some MS users are being charged £300 a month for it.Nabilone tablets are an alternative.There is no reason to accept being in pain and your medics will advise.

That,in a nutshell is my story.I wish you good luck.Also,I shed a lot of weight,felt better and the worst symptom I still remember was the most painful constipation necessitating me using my nursing skills and performing a PR on myself.It is so good to be able to poo properly!

Let us know your journey.

Remember-Positive Mental Attitude.

9

hi Lisa ,

i did the steroids first , didn't really know anything else was was available , was just amazed that they wanted to try to treat it after years of being told they don't know what's happening etc , I tried 2 different ones ,i didnt really like them , they worked first-off and i was pleased but then they just seemed to switch on me ,awful things think my body had read the possible side effects leafet and decided i should have them all.

UCL is hospital in London the ,the neurology dept at queens square in London, i live about 80 miles away but got referred to them.

10

Thanks Pampers useful to know, the side effects of steroids really put me off them.

akamalaccas pain wise I am just on gabapentin at the moment I am allergic to codeine so pain relief will have to be something we work on if it ever becomes needed more than the gabapentin.

11



LisaM said:

Thanks Pampers useful to know, the side effects of steroids really put me off them.

akamalaccas pain wise I am just on gabapentin at the moment I am allergic to codeine so pain relief will
have to be something we work on if it ever becomes needed more than the gabapentin.
You seem to have things under control.The locus of control is key for recovery and to prevent of the depression that inevitably comes to many of us with long-term disabilities.Good mental health is important too-once an old nurse,always an old nurse .
Locus of control-worth researching.
Stay positive.
12

This information comes from the GBS-CIDP Foundation International. They are specialists in CIDP.

Hope this helps.

Ivy

Are you close to:

King’s College Hospital
Denmark Hill
London, United Kingdom SE5 9RS

http://www.kingshealthpartners.org

Phone Information

Fax Information

Email Information

Doctors

Adult Care

  • Dr. Robert Hadden
  • Dr. David Bennett

Child Care

  • Dr. Elizabeth Wraigel

I just read about the UCL too. A another excellent choice.

13

Hi Lisa! Best of luck with your treatment and appointment tomorrow. I just wanted to throw in that my CIDP symptoms started about a year ago, and after doing a bunch of research, (I am a librarian) I decided to try an alternative...I started taking Cannabis Oil in January....I told my neurologist about it and because it seems to be working (and working well!) we decided to continue with it. I have my good days and bad days as well, but I am thankful that I was able to cut, split and stack 5 cords of firewood for my winter's heat, the last couple of months! If you are at all interested in more info on cannabis oil there are many sites. If you do facebook, check out this page: cannabis oil success stories. https://www.facebook.com/groups/416702921703509/ or if you don't do facebook try googling cannabis oil. Best of luck in your journey!!!

LisaM said:

Thank you all.

I have a list of questions ready for my appointment tomorrow.

The IVIG I had was Privgen Foxauthor and I think I am starting to see some benefit from it. I have good and bad days today has been a good day and feeling a bit more positive about everything. Axing what managing to sleep for more than an hour at a time does isn't it?

Pampers did you automatically get the option of IVIG or did you have to try steroids? I will ask tomorrow where they do the infusions here I think it might be a side part to the neurology department of the hospital. It's good to hear some positive about it not being too much trauma to get the IVIG especially when it seems to be working for me.

I will update after my appointment tomorrow thank you all for the moral support just knowing not alone us a help in itself.
14

Dear Akamalaccas,

Since you were in the medical field as a civil servant in the UK, do you know of anyone in my predicament, wanting to move to the UK on a longterm Visa? With Dystonia and CIDP, I can't do without medical care. I have two neurologists in Colorado. For my husband's mental health, he needs to be with his family in the UK. We seem to be in quite a conundrum.

I have another question. Is hydrocodone ever used in the UK? It is the drug of choice with Botox injections for Dystonia.

Thank you.

JanD


said:

hi Lisa,

i'm in the uk too,reliant upon our excellent NHS and was pretty much where you were 8 years ago.I am approaching my 100th monthly top up of IVIG.I am aged 61 and have worked as a public servant all my life,mental health nursing,the civil service and local govewrnment.I stood for council 2 years ago and have been an elected councillor for 12 years before,at the brunt of the Poll Tax riots!

My experience is this.I remember the relief i had when i got the diagnosis-great,they know what the problem is now so can deliver treatment and as with everything early intervention is crucial and you've got that in your favour too.My EMG revealed 83% muscle weakness-now I spend my time protesting and demonstrating-I just walked 3 miles through Manchester at one.I like you have a supportive partner,that's one hell of an advantage.It did get the better of me 3 years ago and I had to give up a job I loved at the local council.I couldn't keep asking my boss,I need to lay down for an hour or 2.I understand from my MS friends I meet up every 4 weeks with,it''s a lethargy we seem to share with them.I have learnt that you can't fight it,you must do what your body is telling you to do.

It went like this first off.My neurologist told me he was going to "soak" me in IVIG for about 10 days and then give me 4 weekly top ups of 50 gms IVIG as I had no allergic reaction and tolerated it well-remember to always hydrate during treatment although a safe dose,according to my new neurologist is 100mgs.Nothing happened after the 1st weekly top up but after the 2nd-remember it took me 2 months + to have a beneficial effect.

I recall feeling a wonderful sense of recovery about a week after the 2nd monthly top up.I will never forget saying to wife for the first time in many months-I am walking up the stairs.She shrieked remembering the time it took her hours to get me out of the bath one time when I was at my worst,and stubbornest.But I did it and have never looked back.As I tell people you can forget about taking up boxing again but life is 100% better.

I still take regular pain relief medication.Like the IVIG treatment,the big message to gain acceptance is like a diabetic with insulin my doctor said you will need this for as long as you live and my pain relief is a mix of codeine,amitryptilline and gabapentin.As I had to retire I became a cannabis cup judge in Amsterdam for a couple of years-I will say no more in respect to the site's rules and the law in the Uk.Unfortunately,although Sativex is available it is only for MS patients and only in Wales.Some MS users are being charged £300 a month for it.Nabilone tablets are an alternative.There is no reason to accept being in pain and your medics will advise.

That,in a nutshell is my story.I wish you good luck.Also,I shed a lot of weight,felt better and the worst symptom I still remember was the most painful constipation necessitating me using my nursing skills and performing a PR on myself.It is so good to be able to poo properly!

Let us know your journey.

Remember-Positive Mental Attitude.

15

Yes Scarry stuff! I was just diagnosed CIPD in October this year don't know much myself! But I am hopeful, so far I am getting better thank the Lord! The IVIG treatments took about a week and a half to start working.
Stressing out is harmful to our bodies so I'll pray for God to give us some peace in this time of uncertainty!

16

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

17

Hi. I too was diagnosed with CIDP about 5 years ago. It came out of the blue with me too. Actually caused by a flu vaccine I received. 10 days after the vaccine the tingling, numbness, clumsiness started. I too have private insurance so I was able to go directly to a neurologist and was diagnosed after all the same tests you had. I was lucky to get such a quick diagnosis as I don't have a lot of permanent damage to my nerve axons. I started IVIG right away (about 5 months after my first symptoms appeared). It seemed to work good for me so I have been on IVIG every 4 weeks now for 5 years. I get it at home now instead of having to go to an infusion center. Less invasive of my time and I feel less sick if I don't actually have to go to a center for my infusions. The good news is that I live my completely normal as I did before the diagnosis. So there is hope that you will get back to being completely independent once you start your treatments. I am on the go all the time and I don't think about my CIDP except when I am due for my infusions. Yes, I had to slow down a bit because I sometimes get fatigued and my legs are just a little bit weaker now (mostly notice it only when climbing steps). But I ride bikes, walk everywhere, am very active and it has not affected my day-to-day life. So cheer up, CIDP is not always horrible if you can keep it under control. Yes it is chronic and will probably never go into remission but at least it is manageable for me.... for now at least. The key is to get treatment sooner rather than later and continue with a GOOD neurologist so that you get the best treatment you can get. Good luck!

18

Good news today I have been put onto a course of 120mg of IVIG every 4 weeks for at least the next 12 months. It takes a lot of the pressure off as it is working and will hopefully continue to and should mean that I don’t have any major relapses in that time. Hopefully I might even get back to work. The consultant has suggested we will be able to consider going back to work in 3/4 months. Feeling much more positive about things today.

Hope you are all having a good day/night.

19

Thank you Chirpybordy good to hear you have had a positive experience. As just posted got IVIG for 12 months sorted under my local NHS Trust so feeling much more positive about things. The not knowing what is going on and what to expect was the hardest bit and sending me downhill. Knowing what is going on and getting a better understanding is helping immensely. I’m hoping I can get onto home infusions at some point as well just more convenient.

20

good to hear.

roll with the punches!

stay positive.