Worried about diagnosis tests

[jan85uk]

Did go through with lumber puncture.Felt to uncomfortable with technician and nurse on the ward.What can I do??very anxious now as Neurologist thinks I may have cns vasculities which puts me at risk of strokes.Any information of what will or should happen would be appreciated.

[BooBoo39 Volunteer]

Hi Jan

Well done on getting through your lumber puncture . Cnsv does put you at risk of strokes I know to my cost. But the important thing to realise is you have decreased your risk simply by being diagnosed .

I have had four strokes but they were in the period prior to my diagnosis .

And most importantly although I have been hospitalised with serious flares since that time I have not thankfully suffered further strokes.

This is purely down to closer monitoring and maintenance medication from my team of medics to help control my cnsv.

Moving forward you need to make sure your surrounding medics have access to sufficient information from professionals who have experience of cnsv.

Because of the rare nature of this form of vasculitis many infact most professionals will never have experienced cnsv first hand.

If you contact John or Susan Mills they will be more than happy to supply details of specialist Vasculitis centres . As they did in my case ... This specialist help for me has literally been life saving. Thank you John & Susan

Lastly please see this diagnosis as the beginning of a new way of life not the end of one .

This is speaking from the experience of a diagnosis in 2006 which was very frightening at the time but has given me new strengths since

Hope this helps , more than happy to offer further help re meds or advice through private message

Take care

Jo

[jan85uk in reply to BooBoo39]

I didn't go through a lumbar puncture.I freaked out panic etc.Want to know what I can do about this it's been a week and have not heard from neurologist.Only neuro Co ordinator and she said she would have to speak to my neurologist.Can any thing be done??feeling so angry and anxious with myself.Was really hoping I would get through it 🤐

[BooBoo39 Volunteer in reply to jan85uk]

Apologies Jan your message read Did go through with it.. My mistake ..

After that I assumed you were frightened of the next stage of diagnosis rather than the LP ..

I understand your concerns and as it is a more invasive test them some it obviously going to concern you.

However at this stage in the care/treatment it is unfortunately a necessary evil..

There is no one test to ascertain cnsv more a jigsaw of results but most importantly the LP test can help rule out other conditions and narrow their search down .

Without some of these tests your medics may be unsure of the best approach for you.

Either way whether it's the prospect of the unknown in tests or the overwhelming fear of being ill and not in control of your own life at the moment . I know it will & is very frightening

Take care

[jan85uk]

Thank you for your replys,how long does post lumber punture headache numbness pain last???as on the consent form it says all this but does not give a indication on how long??I feel I have not only let myself down,but everyone else.Not sure another neurologist could be the way forward.Fresh start.New slate as it were.I'm sure if I had asked for the length of time to after effects to be added I would have just looked forward to the tomorrows.Even thou it's not always about going through all these tests.It's the results.Wishing you all the best with your health.Stay strong and positive.

[Jools52]

Hi,

I read your post and am nearly in years reading it. I am also going through the long and laborious process of getting a definitive diagnosis. The rheumatologist says that they have a strong belief that I have Wegeners AKA GPA but that because my symptoms come and go, it's not going to be quick to diagnose. So far I have had Bronchoscopy, liver and kidney biopsies. I have had CT and MRI of full body and then the final MRI of the brain. I had one occasion where my eyesight just went crazy and I had patches, in my line of vision,that were blind. I was then taken in as an emergency and was rushed into the MRI scanner and I just broke down and got out of the machine and I ran out of Southmead hospital and got to my car and then just broke down and cried. I am an ex Royal marine and reservist and am not prone to bouts of being overly emotional. Anyone who has served with the Marines, old boot necks, will tell you how that goes.

I just wanted to say that you are not alone in being frightened. I am now used to the regular blood tests and even the colonoscopies that I have to have because I also have Crohn's disease but I never thought that diagnosing any disease could be such a long and laborious process. I am C and P ANCA positive and am prone to attacks of fever and bone pain that are called rigors. My temperature can rise to 104 and above yet I can feel like I am gling to die from being so cold. I think that anyone who has experienced these rigors will tell you just how scary they are. Apparently I start babbling nonsense when they occur and am prone to hallucinate. If not for my partner, physically getting me into the cat and driving me into A&E then I would have died last summer. It was found that, along with the crohns and this vasculitis, I was colonised with C Diff and it became toxic in my system. I had to stay in hospital for 3 weeks and was isolated and treated with IV vancomycin and hydrocortisone steroids. I can only remember being there after around the 4th day.

I wanted to share this experience with you so that you know that you are not alone and that many of us can get very scared. I mean, it is is not exactly normal to have so many tests and also to have so many hospital appointments eh. No one truly understands this unless they are unfortunate to have this disease and to be subject to the many and varying tests. We get to be seen by lung specialists, cardiac, bowel, eye and brain consultants and sometimes these appointments are so close to each other so that we don't get any respite from this process.

Please join the vasculitis Uk Facebook page if you haven't already done so. I have found this to be a superb resource and Sue, Lynne and John are all medically trained and have personal experience of this range of awful diseases. I now don't see my GP so often because I can ask questions and get answers very quickly. If they don't know then they will tell you to see your GP or will give you contact details of people who can help. There are 2 Facebook groups, vasculitis Uk and vasculitis UK support group. Both are superb.

In closing. I really hope we both get diagnosed sooner rather than later and I wish you all the very best. Please don't think you have to suffer in silence and don't worry too much if you cry or get scared. I think many of us really do understand how you feel. It can feel very frightening and this can lead to feelings of isolation and worse stress. In my case I ended up asking for a month without any further tests or hospital appointments and this allowed me the grace of being able to gather my thoughts and feel stronger for the next part of this journey.

Take care and be kind to yourself.

Jools

[jan85uk]

It's sounds like you have been put through it to.Its not just the tests it's the anxious wait of results and then further tests. Not knowing where they will lead to.I am really trying my best to not get down.And looking at your reply gives me great strength and knowing that I'm not on my own.But as cns vasculities puts me at risk of strokes,it is a black cloud that just seems to be hanging over me.And as I have symptoms on a daily basis it can be on your mind,and you can't always share with love ones,as you worry they worry to.So there are days that the only out let is tears,which are a relief.Best wishes and positive vibes are sent your way 😁I will check out vasculities Facebook page now.

[Galaxy2]

Hi Jan

Don't be hard on yourself, a lumbar puncture is a daunting prospect, but saying that when I had one done I felt afterwards it really wasn't as bad as I expected and can be quite a quick procedure. To avoid the headache I remember being told to lie down immediately afterwards and for the next few days too and drink lots to keep hydrated.

Take Care

Jenny

[jan85uk]

So glad to hear of a good experience.It's helps a lot. Positive and kind wishes to you.😀

[Melon]

Snap to Janny14's answer. The idea of LP is frightening but the experience isn't that bad and the information tends to give you worse case scenario. Follow all of the advice to keep any after effects to the minimum.

In terms of CNSV - there are many different levels

- Based on my symptoms (which are similar to yours - various aches and pains, numbness, tingling, weakness, hypersensitivity, spasms, major headaches of all different types, anxiety, brain fog) my consultant has said mine is a 'low grade CNSV'. I take Prednisolone (steroids) when it starts to flare up (for me it varies between 4-6 months). Like a lot of people on this site I find there are key things which tend to start a flare/make it worse - stress and infection affect it.

After my LP (and a period of time) my consultant decided that he had enough info to make the diagnosis, we mutually agreed that it seemed unnecessary to go through any further invasive tests as we had found a regime that worked for me. This is my point - everything is scary but by talking openly with your consultant he will be able to provide the best care. You are a big part of the 'care equation' - don't be frightened to speak up and make your opinions heard. Only then can your consultant bear those things in mind when deciding a course of action. He/she will explain alternatives and give you advice on which would be best for you. Something they can forget to do if you don't discuss things from your point of view.

Oh and just a point worth considering - re. that technician - he/she probably spends everyday doing LPs, most consultants don't. I know that when I have bloods taken the phlebotomist who does it day in day out is much better than anyone at my GP surgery! Not that you can't say to your consultant that you would like him/her to honour their comment about them doing it.

Hope all goes well for you

[jan85uk]

It's been almost 2 weeks next Tuesday,my neurologist had 2 weeks leave,and is due back next Monday,I know he is understandably busy,but I just hope he has a answer to all this,hopefully due to experience of previous patients,as I feel I can't be on my own,he must of had similar experience with other patients. <reasureing my self> I hope Was thinking sedation may help,but not sure they would be able to do a Lumbar puncture if it was used.Thank you all for your time on replying it has really helped.

[Hidden in reply to jan85uk]

Hi - I had a lumbar puncture last year. It took a few goes as I have much arthritis in my spine. However I was absolutely fine afterwards and the dr explained that the clots around the tissue would surely mean that there would be no CSF leakage to cause headaches after so every cloud...?!

The results have helped me quite a lot although still going through other invasive procedures before hopefully learning more in August finally. Hope this helps.

[jan85uk]

Thank you for your reply.I am worried about attempts.And may add that on consent form,as I have never had one done.I only want one attempt,I hope I can do this.As I have a consent form and there is plenty of space for me to add on.Also need to know how long to book of work??when was everything back to normal ??would 2 weeks be enough time??thanking you for any help in advance.Best wishes to you and your tests

[Hidden]

Hi, just seen this post.

I am the worlds biggest wimp when it comes to any needles and also have this positive pathergy which makes it worse... however, the L.P. was EASY! No pain just pressure sensations. And it was the Dr's first ever attempt so it lasted 15 minutes. Afterwards I had a cola drink and lay down for an hour. No issues at all. I was more focused on results than how I felt about L.P. anyway.

Maybe part of you wants to avoid the test to put off the results?

Don't be afraid, im sure everyone hete will agree that not knowing is far far worse than knowing you have a condition to manage. it still may come back all okay..

Take a deep breath and arrange an L.P. asap

[jan85uk]

Think you are right.It's not just the proceddure it's the results.I know they will be measuring the csf and should be able to tell me what the pressure is afterwards.so no waiting equals less anxiety.As the hospital is not my local one,am worried about travel as I need to stay flat.And generally worried about after effects,going to work.Thinking I'll be alright.no headaches or numbness in my legs.10% chance of this.