Searching for answers

[charlieab]

what the heck is going on?

Hi

I wanted to seek some info and advice if possible.

In 2015 I was healthy and had been pretty healthy for all of my life leading up to that point. In 2016 my health began to collapse and now it is pretty much lying flat on te floor.

Ive got 8 plus loud tinnitus noises in my head; hearing loss, and loads of auditory problems such as ETD and TTS; TMJ; visual snow, blurred double vision and assorted infuriating visual intrusions; levido reticularis; raynaud's; osteoarthritus; swollen fingers; painful joints and muscles; cold fingers and knees; and what seems like pretty full on (or off!) brain fog.

As they found quite a lot of brain lesions it wa thought that it might be MS but they then decided that the lesions were more likely isceamic than demylinating. I thought it might be APS but the three APS tests just came back negative, though I know that there is such a thing as seronegative APS. Ive had some scleroderma tests but am awaiting the ACA one. And Ive had a negative ANA by IFA and by ELISA, probably ruling out SLE and RA.

I cant think of what else it could be. The one thing left that seems to possibly fit the bill is some kind of vasulatitis.

Does this sound posisble and if so what needs to be done to find out if it is a kind of vasculatitis. I just want

Thanks for any ideas/ info.

Best wishes

[Hidden]

Hi Charlie,

The only way to rule out Vasculitis ( which is a rare complex autoimmune disease ) is to see a Consultant who has good experience in diagnosing and treating it.

There are over 18 different variants loosely divided into the size of blood vessels they affect ( small, medium and large ).

Many types can affect the Central Nervous system, Primary Central Nervous System Vasculitis is very rare though with an incidence of 1 Patient per million.

You are welcome to phone or e mail the VUK helpline for further discussion, myself or John can point you in the direction of your nearest experienced Consultant.

vasculitis.org.uk/helpline

Beware that Vasculitis is a clinical diagnosis, whilst most patients have signs of inflammation in their blood tests negative bloods doesn't rule it out.

Best wishes

Lynn

[Melon in reply to Hidden]

Yep. Sounds like a referral needed. I have pcnsv and your symptoms tick most of my boxes too and my blood tests and lumbar puncture were negative. MRI lesions evident but not in ms region. Hope you can find a good consultant. Mine is a neurologist.

[charlieab in reply to Melon]

Hi Melon

Thanks for your reply. Hope you doing OK. I will mention pcnsv to the neurologist who will see this month.

Despite a lot of individual things having been diagnosed (eg osteoarthritis, hearing loss etc), one familiy member who I have been staying with since my marriage ended last year is starting to act like Im imagining things or exagerating them. Some kind of diagnosis would be a relief I think, if it led to a treatment and stopped things getting worse so quickly. And then at least would know what support gropup to join.

Could I ask how they diagnosed pcnsv in your case and how you have been managing?

Thanks again. take care.

Charlie

[Melon in reply to charlieab]

I've sent you a message.

Thanks - take care yourself

[charlieab in reply to Melon]

Thanks Melon. Ive read the PM and it was really useful. I cant respond at teh moment as it wont let me respond until I verify my email.

[charlieab in reply to Hidden]

Hi Lynn

Thanks for your reply. Hope u doing ok today. I will certainly phone the help line. Though Im not sure what time it is open or most most likely to be open.

Getting some kind of explanation from doctors as to what is wrong with me has been much more difficult than it should be I think. When I showed the GP my painful swollen fingers, he said raynaud's but since then I have put them on ice and they dont chnage colour. So maybe not raynuad's. Ive had to go to private consultants to get the GP to order basic blood tests. But since those have come back negative, the GP's attitude seems to be that you just have to live with whatever it is. And I woudnt mind that if things didnt keep getting worse.

So I think I will have to go private again, which is not ideal, and try and find out what is going on. Im thinking that if I go to a vasuclitis specialist then they should also be able to identify if it is anything else? Tbh I was pretty convinced that it was APS (with the levido etc) but now am pretty much stumped. In an ideal world the NHS would make a concerted effort to find out what is wrong with patients and do so in a quick space of time, like a couple of months. It should be left to patients and the internet.

Anyways. Im rambling. thanks again.

best wishes

[Hidden in reply to charlieab]

Hi Charlie,

I will be in later today, heading for my 6 weekly infusion at the moment.

Leave your number on my phone and I will get back to you. Alternatively e mail me your phone number and I will call.

Lynn

[charlieab in reply to Hidden]

Hi Lynn

Thanks. Thats really appreciated.

My hearing seems to have collapsed atm and so phoning might not work out so well. Whilst Ive lost a lot of hearing in the last 18 months, I think (and hope) that the latest decline is just wax against teh ear drums and will resolve in time. But I will try next week when hopefully I can hear again. Thanks again,

Kind regards

[Hidden in reply to charlieab]

Happy to correspond by e mail, it's not a great idea to put too much personal information on these pages.

There are a number of strategies you can use to get a referral from a reluctant GP. The problem with going private is that many of the Consultants with good Vasculitis experience don't see patients privately.

[charlieab in reply to Hidden]

Thanks. Makes sense about the private information.

I will see if I can get my GP to refer me but I suspect that they are quite focussed on budgets and that even with a referal the wait would be for up to a year.

Thanks again for your help.

[Hidden in reply to charlieab]

Charlie,

The Consultants who have a special interest in Vasculitis don't tend to have big waiting lists and see patients quickly. This is mainly due to the fact that Vasculitis is a potentially organ and life threatening disease, quick diagnosis and treatment can be essential.

If you let me know what part of the UK you are in I can point you in the direction of the nearest specialist.

[charlieab in reply to Hidden]

Thanks. That would be great. Im in Carmarthenshire in Wales. Im guessing the nearest would be cardiff?

[Hidden in reply to charlieab]

Hi Charlie, that explains some of the problems you have been having!Wales is a bit hit and miss when it comes to rare disease.

I will PM you.

Lynn

[charlieab in reply to Hidden]

Thanks Lynn. Hope infusion went ok.

tbh wales seems a bit hit and miss when it comes to health care in general. There are free prescriptions but you have to get diagnosed first and that is the real battle.

[charlieab in reply to Hidden]

Hi Lynn

Hope you had good weekend. Any joy with finding vasculitis specialist in Wales? Thought I would try and make an appontment if possible this week. Thanks alot.

Charlie

[Hidden in reply to charlieab]

Have PM'd you.

[charlieab in reply to Hidden]

Thanks Lynn. That is brilliant. And thanks for teh good advice about the MRI abnormalities. That makes a lot of sense.

Still havent worked out how to pm back yet. I set up my original Health unlocked account with my normal email and then it stoped working and it wouldnt let me reset the password and so I set up new email so could register and then lost the password for the new email. I think it must be brain fog and when it clears i'll sort it out!

Thanks again. I really apprecaite it.

best wishes

charlie

[Hidden in reply to charlieab]

My e mail address is [e-mail]. It's probablyeasier to correspond that way.

[Tunabird]

I am not a medical person at all but after being diagnosed with vasculitis I have learned that there are 18 different types. So it may be possible. You can get information online from the Mayo Clinic or the Cleveland Clinic

[Hidden in reply to Tunabird]

The VUK website and other sites are actually a better source of information than the 2 sites you mention. 😀

[charlieab in reply to Tunabird]

Thanks Tunabird

[Hidden]

Hi Charlieab. I am so sorry you still have no resolution to this quest for answers for your worrying symptoms. I hope Keyes will help set you back on track. It's horrible enough living with these symptoms let alone with such uncertainty.

Just a point though - my fingertips don't turn white or blue if dipped in ice - they shrivel and turn bright red. But my rheum and various GPs still assure me this is Raynaud's.

As I think you know, I share some of your symptoms, and I did have some white matter show up on brain MRI and paired oligloclonal bands in a lumbar puncture. It took a lot of persistence over a six year period, and several brick walls, to get rediagnosed from RA to primary Sjögren's last year. I still feel there is a secondary vasculitic element to my disease - particularly when it's at it's most active and painful, with tiny dark red spots all over feet and legs. However as I'm on Mycophenolate anyway (a drug often used for Scleroderma and Vasculitis) and doing well on it - I haven't pushed my new rheumatologist for clarification on this.

Best of luck with your journey to get a diagnosis and some effective treatment. I recall a GP telling me that I may just have to accept that I would never know the cause of my horrible neuropathic pain in arms and legs - and would just learn to live with it eventually. Same for many other symptoms such as burning lips and gums, constant tinnitus, disequillibrium, sweats, microscopic traces of blood in my pee, pelvic pain, GI problems at both ends and Raynauds. I have come to terms with most things that have happened to me now, including all of the above. But only because I know what they are.

As Einstein said "all truths are easy to understand once they are discovered. The point is to discover them."

Tx

Ps the oak toilet seat worked perfectly!

[charlieab in reply to Hidden]

Thanks Twitchytoes. Yes, Lynn gave me some contacts for doctors who look like they could be well placed to determine what is going on/ not going on. Funny thing is that just before the s*** began to hit the fan in 2016 I considered private medical insurance but decided that Id been healthy all my life and would never need it. Now I seem to be paying for the Welsh private consultant's christmas party every time I see one of them.

Hope you doing OK atm. And I completely aggree with needing to know. Its not idle curiosity on the patient's partLike you intimate, its so that we can get soem tretment and maybe stop the decline. Hope tinnitis is not at full volume today. My hearing plummeted in last week and tinnitis has concommitantly (if thats the right word) shot up. I literally had to ask a neighbour, who I was helping in with te shoping, if her car engine was on, as I wasnt sure if the noise was that or the tinnitus.

Anyways, thanks again. Take care.

R

[Hidden in reply to charlieab]

Yes Lynn is a real star!

Oh dear - sorry your tinnitus has affected your hearing Charlie. Mine hasn't but it's a constant high pitch alarm ring tone and bothers me a lot at times. I have hyperacusis rather than any significant hearing loss though.

Increasingly I'm learning to live with it. My younger sisters were both born profoundly deaf and have always had tinnitus, my brother in law too. He has just had a cochlea implant and this has worsened his tinnitus but also given him a world of sound - which he's really benefiting from. He told me some of his techniques for when it's particularly bothersome, including talking to it and composing a sound track that includes it?! But I think we all just find our own ways of dealing with tinnitus. Knowing the cause would really help of course!

I feel that, if these family members all have to endure theirs then I certainly can as well. I do find phone calls very hard going now though - but much less so if on speaker phone in the car than if holding a handset to my ear.

If yours is due to something like CNS Vasculitis then perhaps, if it's diagnosed and treated soon enough, it might be knocked on the head?

I think mine is probably caused by TMJ and my wonderful oral consultant confirms that this is quite likely. Alternatively it could be part of the PNS/ autonomic dysfunction stuff that my Sjögren's has caused. Either way it's not going anywhere apparently, despite immune suppression, so no choice but to accept it really. X