hi just wondering

hello everyone glad to have found this site .iv just joined today.my problems all started in 08 and im still attending doctors etc for a full diagnoises.in the start it came on me like a viral infection pain arms and hips pins and needles strange feeling in my head tingling senceation numbness etc.with no sign of it getting better my GP sent me to hospital.got the usuall tests done bloods mri on brain all were normal.ms was mentioned but not all doctors agreed with this.

the next stop my GP sent me to a neurologist he told me he could find nothing wrong with me so I went home totally lost but I I visited my GP a week later the report came back with fibromyalgia on it.i took it that's what I had and continued on.however in 2010 i developed a rash on my arms and legs my GP did not know what it was so he sent me to a+e only one doctor could tell me that it was a vascultits rash and gave me a course of steroids for two weeks and it cleared up but left staining marks on my feet.

in the mean time I noticed from talking to people with fibromyalgia my symptoms were different I was beginning to wonder??.I was getting bad headaches and getting sick at times and noticed my memory wasn't as sharp as it used to be.in 2011 I had to go into hospital I had such a sore troath with a stinging tongue and lost my appitite altogether.i had a scope done and the found imflamation in the troath and stomach with h-plori infection also but that all settelled down with treatment

hope im not borning u all now.i still was havening aches and pains especially my calf muscles

with bad headaches and the hearing in my left ear was up and down weakness in my left arm at times and all the other symptoms aswell

so my GP gave me an option to see a different neurologist I did this and I had an mri on my brain last October that was clear he said that I had carprial tunnel in my wrist and put the headaches and nausea down to migraine.i showed him the marks from the rash and asked him did he tink it could be cns vascultits. he told me I would be dead by now if it was .I left again disheartened.

from that time till now I did see an immunologist he looked at me and done a lot of blood tests but they were all ok apart from a low folate and a vitamin d he was happy with the results.i have to visit him again in two weeks things are much the same but the tingling crawling senceation in my head memory problems conceration to me are not improving it.im out of work again as I just cant function the way I use too.sorreeeeee for going on and onn thanks for reading.

19 Replies

  • Hello Tommy, welcome to you but sorry that you are here! Can you tell me in which area you live and what hospital you attend.

    It seems a long time to be waiting for a diagnosis to be sorted out for you.


  • hi jacqi

    im from Ireland and im attending a clinic in Dublin at the moment its very frustrating not getting the the right diagnoises hopefully it will be sorted out soon.


  • It could be vasculitis. I think you need another second opinion. Cerebral vasculitis can develop slowly, sub acutely, and I think the neurologist you saw was wrong.

    I was originally diagnosed with ME. My initial symptoms were being sick a lot, falling over, losing control of my arms and legs etc. But the symptom pattern changed over the next few years to look more like MS. I developed severe bladder incontinence, and visual problems, and, yes, I had huge cognitive problems with memory, concentrating, reading etc.

    There is no definitive test for vasculitis in the brain. Sometimes an angiogram or biopsy can confirm it, but often they are negative, even when there is disease damage, and it is a high risk process. Brain scans often look multiple sclerosis. Lumbar punctures are often normal. So it is a very difficult diagnosis to make, and is a diagnosis of exclusion.

    I was rediagnosed, 3 years after I first fell ill, with cerebral vasculitis. That was in 1997. And I've been fighting it ever since. Although my cerebral vasculitis developed slowly it has become much more aggressive in the last decade, and I am lucky to be still alive. A massive cocktail of multiple immunosuppression drugs is trying to slow the progression.

    Can you see a vasculitis specialist? Is going to see Dr Jayne or similar an option? I really think you need to see a vasculitis specialist. I was diagnosed by a vascular diseases doctor who deals with a lot of vasculitis patients. I'm not convinced many neurologists are clued up enough about vasculitis. You may be better off, for example, seeing a vasculitis specialist who is technically a rheumatologist or renal specialist, but knows vasculitis really well.

    Good luck!

  • hi viv

    thanks for your reply hopefully on my next visit in two weeks my consulant will be able to help me out more or put me in touch with someone its definitely a tough one to diagnoise.

    best wishes


  • was a vitamin b12 test done ? Pins and needles and other symptoms you have are some of the symptoms of b12 deficiency, which i have. Just a thought, as many different things have the same symptoms

    You could go onto the b12d site there is more info on that.

  • hi bowler

    I had the vitamin b12 test done and all was ok.

    thanks for reply


  • I agree with Viv. I think you should ask to see a Vasculitis Specialist. I suggest you might contact john.mills@vasculitis.org.uk for the name of a specialist in your area.

  • hi jan

    sorry I didn't mention in my first question that im from Ireland I know there is a support group here and I have been in touch only in the last week.i did get some contact details of two doctors who specialise in vascultits but its a long waiting time even if you go private.ill have to wait and see what my consultant comes up with on my next visit in two weeks.



  • Ok Tommy Sorry i did not realize that. Good luck with your next visit.

  • Hi Tommy, I'm currently in the process of being diagnosed and live in Ireland too. I have had very similar symptoms to you going back up to 20 years ago. I too attended a clinic in Dublin and got no answers. I waiting about three years to see a nurolagist and she completly dismissed me. At the time I was 19 and had, numbness and tingling in the outside of my right arm - the three fingers furthest from my thumb and continuing up my arm would have a degree of numbness/reduced feeling with tingling and pins and needles, I had severe dizzyness, I was collapsing to the ground from sitting or standing as my body just became so heavy I couldn't support it, I was shaking and twitching after I collapsed, I was also suffering from severe headaches but they weren't occuring at the same time as the other "strange symptoms" as I came to refer to them.

    I had asthma as a child but hadn't had an attack in years. In November I took the worst attack I have ever had. I ended up being admitted to the Lourdes Hospital in Drogheda as multiple nebulisers couldn't stop the wheasing. There was no chest infection showing. I was discharged with a standard follow up appointment of about 6 months. My asthma continued with 6 to 7 severe attacks a day and I had to get a home nebuliser. No matter what I did I couldn't get my breathing under control.

    Then In February I developed Bell's Palsy so I was put on anti-virals and steroids. Two weeks later I developed a very angry raised red rash on my face. and right up to the edge of my eye. It was suspected as shingles so I was put on more anti-virals and more steroids with an anti-viral eye cream. Everything seemed to be resolving until the day after St Patricks day when I got the rash and the Bell's Palsy back accompanied by an extreme headache. I went to my husbands GP as I couldn't get an appointment for mine. They said that I needed to be admitted to hospital. Thankfully I had private health insurance so I was sent to the Hermitage Medical Clinic in Dublin who have been fantastic. My main consultant is Mr Muhammad Rizwan Uddin. He's so thorough and very approachable. As far as I know the waiting list is not too long for him but he does only see private patients. If you want any other details private mail me as I know how difficult it is dealing with the healthcare system in Ireland.

    My rash turned out to be Vasculitis so they're just trying to determine what type and if it's causing the Bell's Palsy or if that's something elso.

    I hope you get answers soon

  • thanks mandy I sent you a private mail did you recive it?


  • Diagnosis of vasculitis is always a long drawn out process. My daughter had 12 months of 200 dr appointments before it was diagnosed so persevere. There is no help for my daughter it seems and we just have to accept it. But it is so hard. Be prepared. Don't give up, but collect lots of PATIENCE. You will need it.

  • thanks for reply 02061949

    hope your daughter is doing ok.


  • Dear Tommy,

    First of all welcome to the 'club'! Sorry rye humour here; I do hope that they find your problems soon so, at least, the right treatment can be started. Your symptoms are, believe it or not, relatively 'common', for vasculitis that is! Skin rashes, joint pains (associated with Rheumatoid Arthritis- have that one checked) are often 'markers'.

    I am on dialysis, three times a week, as a result of the vasculitis attacking my kidneys amongst other places.

    If you want to 'talk' further please do contact me, through the 'forum' although I don't know what I can add to the above.

    Keep well (more rye humour)


  • thank you for your support Andrew


  • Hi tommy, I agree with jann, contact john.mills@vasculitis.org.uk he will be very helpful. Also, have you and your GP had sight of the Vasculitis Route Map? It is very informative on all types of vasculitis with graphic examples.


  • Dear Tommy,

    Yes do get a copy of the 'Roadmap'- if you ask very nicely and say that it is for a doctor, or other professional organisation, it can often be supplied free of charge- else it is a small fee to cover the printing costs; it may well be available 'on line'. The best person to ask, about all this, is John I'm quite sure that he can arrange for you to have a copy. I have spoken to John, over the telephone, and found him to be a very helpful, and caring, man (no I'm NOT on his payroll!!). You will find the 'Road map' helpful albeit a little technical, in places.

    Do let me, us all, know how you get on will you?

    Best wishes


  • thanks Andrew ill give it a go.


  • Tommy, we all need someone to talk to. Go for it on this site. You will get cyber support and, no you are not boring. Everyone's journey is different but just as tortuous.

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