A body that feels all 'wrong'

[vivdunstan]

I have cerebral vasculits, since 1994, when I was just 22, and the symptom pattern is totally different from other more common forms of vasculitis like Wegener's. Mine is a neurological disease. The vasculitis in my brain causes lots of strokes, often small ones, but cumulative brain damage, and a wide range of neurological symptoms as a result, as my brain struggles to control many parts of my body, including my arms and legs, my bladder (permanent incontinence, so I have to wear pads permanently), my hearing, speech, eyesight, sleeping for up to 17 hours a day, memory, concentration, ability to read, etc.

Day to day it's like living with multiple sclerosis, in a primary progressive form, but with the added extra that it could kill me in a flash. And my form of cerebral vasculitis is very aggressive, resisting much conventional and unconventional treatment. As things are going I don't know how long I will have.

Generally I cope well with it. I'm calm, philosophical about things, very rational. My consultant has used the term 'phlegmatic' to describe me, which once I established wasn't to do with phlegm was quite a compliment! He's often more affected by things than me who tends to be very level-headed. But there are some times that upset me most.

What I can never get used to is when my arms and legs, and other parts of my body, just feel 'wrong'. It's really hard to describe this sensation to others. I believe it's similar to what people with MS get at times too. But because it doesn't happen to me all the time - though I always have trouble controlling all my limbs and need, for example, to use sticks or a wheelchair permanently - I never get used to it. When this 'wrong' sensation happens my limbs feel alien, numb, often like lumps of wood. It's not me, and it doesn't feel like me, and I hate it. Usually when this happens I have to rest in bed for two or more hours, until, hopefully, the 'wrong' sensation passes, at least for a while. But it doesn't always, and sometimes lingers for days.

If anything was going to stop me coping at the moment I think this is is it, if it happened more and more frequently. And that might easily happen. It's the one thing that reduces me to tears though. Generally I accept my lot really well.

At the moment my disease is not stable, and I'm still waiting (since early September) for an urgent referral to a rheumatologist who can approve an experimental last-chance biologic therapy. This was decided upon after my rounds of Cyclopshosphamide infusions in the summer (horrific, gruelling stuff) failed to make any impact on my disease at all, well apart from shooting up my inflammation markers to record levels! I've had to raise my steroids substantially twice while I wait for this appointment, and I still don't have a date. But maybe soon. Fingers crossed.

In the meanwhile please brain/body, stop feeling 'wrong' so often. It's very upsetting.

[PatriciaAnn]

Hi Viv

This sounds absolutely dreadful. I know that me feeling sorry for you won't make you better, but if it could you would be better immediately.

Phlegmatic is one of those words which means quite the opposite of what it looks like and sound like, but I think he has hit the nail on the head. Stoical is perhaps another way of putting it.

My Christmas wish for you is to feel that your body belongs to you again, and my New Year wish is for the rheumatologist to get off his butt pdq, and that the treatment works.

Take care. Kindest regards.

PatriciaAnn

[HiveMind]

Dear Viv,

I actually have no idea how you feel, as I do not have CNS but I have a friend who does. Maybe you and she should exchange posts? I have CSS.

I read your post with much sympathy though, although this in itself may not be of much practical help to you. Many of us deal with many many different symptoms, some minor and some very major ones. You certainly seem to be dealing with lots of major ones and my heart goes out to you. Life must very tough for you at present and I hope with all my heart you get the help and peace of mind you need.

Take comfort that in coming on here and being honest and "Phlegmatic", you are most probably voicing all our fears. Thank you for having the courage to do that. It is somethig that has been troubling me recently and to know I'm not alone is strengthening.

Do you have someone you can talk to? A relative or at least a rheumatology nurse? Failing that send me a private message and I will give you my phone number.

Try to have the best Christmas you can Viv. I am sure all our thoughts are with you.

Tons of love. XX

[Jann]

Viv,

Difficult to know what to say. My thoughts are with you.

Jann

[John_Mills Volunteer]

Viv, We've talked a lot over the past couple of years and you have been a great help to me and to Vasculitis UK. I only wish we could be of real help to you.

Do you mind if I share your most intimate and moving words with others who would most probably never read postings on HU, maybe never have heard about HU, but who might understand. Whether or not they could help you, I don't know, I would like to think so, but they might be able to help others with CNSV in the future.

You and Jo M. have done so much to draw attention to this most awful but neglected type of vasculitis.

John

[vivdunstan Volunteer]

Hi all,

Thanks for all the nice comments. I really appreciate it.

Pat: thanks for the kind Christmas/New Year wishes. I think we may be speaking to the consultant after he gets back, and expect he'll be trying to accelerate (again) my rheumatologist appointment. He had originally thought I'd be seen within 4 weeks ...

BerkshireBird: I have a wonderful and supportive husband who I can and have talked to about this. And I can also talk to my parents about it. So I'm not on my own, and generally very happy - amazingly really! - and have support networks where needed.

John: yes please feel free to share what I said, wherever you want. I thought it was important to share these thoughts, and also what it can be like living with the neurological form of vasculitis, and would be more than happy for my words to be seen more widely.

Thanks again. Had a nice evening. Feeling a little less 'wrong' at the moment, and I don't have to go out again until next Thursday for my blood test. So I will rest and rest and rest. That has got to be good for me, especially while I wait for the latest steroid ramp-up to take effect.

Best wishes to all for Christmas and the New Year.

Viv

[MiaTilehurst]

Hi Viv, I too have CNS vasculitis and can relate to your description. At times it feels as if I take one step forward only for it to be followed by three back. Don't despair I am told that 'the book has not been written yet' to establish best course of treatment. One can only hope that by being as open as you have had the courage to be that greater knowledge and understanding will grow. I was diagnosed in 2005 and have not managed to reach remission either. It is a rollercoaster of a ride but we are not in the driving seat.

Am currently getting over a viral infection so little energy and sleeping lots, please forgive this brief reply I want to write lots more but not sure it will make sense. Message me privately if you wish.

[John_Mills Volunteer]

Hi Viv, while we are on the subject, can we all drink a toast to that wonderful supportive husband you mentioned. Vasculitis, like many illnesses, affects not just the sufferer, but all the family. So we should all appreciate the support and understanding that they give us.

John

[vivdunstan Volunteer in reply to John_Mills]

Thanks for that John. Lovely idea.

[Melon]

Wow Viv,

First of all can I agree with all of the above thoughts and also wish you a happy Christmas.

I just wanted to say (as a 'probable' CNSV sufferer - no biopsy so no confirmation) thank you. I so recognise the 'my body feels wrong' decription and just knowing that others feel like this reduces my 'I must be mad' or 'It's all in my head' feelings. (As my neurologist is keen to point out in our case the latter is literally true!). I just wanted to let you know that your sharing has had a positive effect and I hope knowing this has a similar effect on you.

[milliewin]

Hi Viv, I do hope you are feeling a little better and managed to try and enjoy Christmas a little? As a fellow Cerebral Vasculitis sufferer, I just wanted to say that I so get the 'wrong' sensation that also happens in my limbs which yes totally feel alien, numb, often like lumps of wood? I have always tried to explain this to doctors, neurologists etc but never could until I read your description so if nothing else thanks so much. I guess I am lucky compared to you as the treatment I had with the Cychlophosphamide and Steroid and Mychophenolate did control the acute form of my Vasculitis and am relatively stable now but as you it is the many problems suffered from the original strokes and brain damage which present a daily struggle for me.

I also live over 200 miles from my family and am on my own with my 2 children so it can be a lonely and difficult life sometimes. Luckily my children are older now but they have never understood this illness and the effects it has had on me?

Anyway all the best and take care

Sarah

[vivdunstan Volunteer in reply to milliewin]

Thank you Sarah. Yes I had a good Christmas, albeit the usual sort where I'm asleep almost all the time due to the brain damage. My husband woke me in late afternoon in time for Dr Who on Christmas Day (my favourite TV programme), then we had a Christmas dinner, and I was back in bed not too much after that. So good.

I was explaining the 'wrong' ness to my consultant the other day and he really seemed to be understanding it, which was nice. Luckily that sensation has passed since I raised my steroids 12 days ago. Now I'm back to my normalness - not any normal person's normalness, but what I'm used to

[Harold]

I hope now you have had your steroids have been raised that you get back on an even footing.

It sounds like your husband is a cracking bloke, as john mills put the other half does have to put them self to a lot of hardship and we don't always notice when we are ill.

[vivdunstan Volunteer in reply to Harold]

Thanks Harold. My steroids were raised twice before Christmas. I've been seeing lots of different consultants ever since, to try to get second and third opinions and input into a new treatment decision. Should get the ultimate decision soon. Yes my husband is wonderful.

[klc48a]

You have just described my arms and legs I fear that they will not return to my body that I will not have control over them again when they go their own way on me. I hate my wheelchair I go to bed I can't cope with immobility.