MRI result says possible Vasculitis, feeling confused

[vix66]

I am feeling very down and confused, but I have just got MRI results back and shocked to be told I may have vasculitis. I am 49 years old.

I don't want to bore you with all my ailments but this is a run down of what has happened. I need some guidance, if anyone can help please.

I have cold urticaria where I react to the cold, under 16 degrees I come out in hives that burn and itch. I was diagnosed with this 18 months ago. Because of the above they checked for protein in my blood and I have IGg lambda 4gl and have been diagnosed with MGUS. The levels have gone from 2-4gl in 6 months I have to be checked every 6 months because of the risk of Myeloma.

I have pain in my legs from my hips to my toes, my legs often give way and I have shooting pains, this is constant and its got progressively worse over the past year. I was sent for an MRI on my back, which was all clear apart from facet joint problems that I was already aware of.

I was then sent for an MRI in my brain as MS was suggested. I got the results this week. I have Multiple, nonspecific, T2 and FLAIR hyperintensities in the bilateral frontal and parietal supratentorial white matter. No specific features of demyelination. and it goes on to say that this may represent chronic small ischaemic foci and questions vascular risk factor.

My doctor has tried to refer me out of the area to a vasculitis specialist and the wait for an appointment is around 3 months. That's the hardest part is waiting, then getting referred then waiting again. In February I saw a rheumatologist, she did some blood tests asked some questions, asked me to touch my toes and said I was fine. I have seen a kidney specialist last year, she said I haven't got Vasculitis as I wasn't ill enough! This was all before I had the MRI on my brain.

I have a weak-medium positive ANA and a positive PANCA

My GRF is 74 and I often get kidney pain and protein in my urine

My ESR is 23.

I don't think the stress is helping as since I got the results I have felt worse than ever. I am really worried and not sure what to make of all this. I don't feel well a lot of the time and very tired, but feel my doctor doesn't know what to do either. I don't know if the leg pain is connected, but that was my main reason for getting a diagnosis and I seem to have found lots more problems and opened a can of worms.

Can anyone help me please?

[Mooka]

Hi vix66

I'm so sorry to read your problems Your doctor probably doesn't know what to do to help you as he probably hasn't come across all this before. Have you rung the Vasculitis helpline? They will be able to tell you of specialist Vasculitis hospitals in your area maybe one that can see you sooner. I have GPA and had pain in my legs and still do after treatment. I know it is difficult but try not to stress too much as it can make you feel worse. Let off steam on this forum instead.

Good luck and best wishes

Jackie

[vix66 in reply to Mooka]

Thanks Jackie,

I did call the help line and they were great. The lady gave me all the names of specialists and I passed them on to my doctor. The doctor contacted one and the first appointment I could get was September. I may go privately, but I may have to have a lumber puncture and I couldn't afford to pay for that privately. I am waiting again for my doctor to try and refer me to one of the others.

I live in hope.

[Hidden]

Iam so sorry you are going through this my heart goes out to you . There are many people here that will help you we do understand . I've got cerebral vasculitis I was diagnosed in 2004 I'm 50 years old know and I made made peace with it long ago. Please try to stay as stress free as possible it's very hard at first to do this but it helps so much. Everyone is different there are many relaxation methods from listening to solfeggio frequencies on you tube , guided mediatations , relaxation cds which you get more information from vasculitis uk . I learnt reiki which I love I practise daily and I volunteer for the nhs in a hospice the feedback from patients is incredible . It's amazing when you are told the same thing by another humanbeing that you experience my pain is gone ,my anxiety has lifted , its an incredible honour. I know its not for everyone but be aware it's there if you want to try it . I wish you well on your journey if I can ever help just let me know . Kind regards Diane

[sorefeetsoldier]

Hi i am sorry you feeling so many debilitating symptoms. many on here will relate to your concerns and i hope it is some comfort for you tell people who KNOW how your feeling . You never mentioned the meds you take to treat your conditions?

I hope you feel a bit better soon ☺

[Suzym2u Moderator Vasculitis UK]

Where are you seen? Where do you live? Has anyone suggested Cryoglobulinaemia? It sounds as if you have the symptoms.

If you want to write to John [e-mail] he maybe able to help but would need to know more details.

[AndrewT]

Dear Vix,

Sorry to read about your problems, please DO contact John-if anyone can help it will be him. Are you able to get to Addenbrooke's Hospital Cambridge? If so Dr David Jane, and his team, are based there-personally, and other can/will dis-agree here-I think that he is the best Vasculitis specialist there is. I have to admit that my Transplant Consultant, Dr Andi, at Ipswich hospital is good-he clearly has a vey good 'working' knowledge of Vasculitis.

Sorry that I can't be of more help Vix.

I will put you in my prayers.

AndrewT

[vix66]

Hi again,

Thank you so much for the advice everyone. I am not on any meds at the moment, I was given morphine patches (for the pain in my legs), but I came off them as its a sticky plaster covering everything up and I don't want to rely on addictive drugs (which was happening). My Doctor has requested an appointment with Dr De Cruz at St Thomas's but although I thought it was urgent I have had no appointment through and she suggested it could be as long as September. I have now made a private appointment with him for July 19th (the earliest I could get).

I am more worried of dementia than anything else, as that is what keeps cropping up when I google the white mass in my brain. I nursed my mother-in-law who had Alzheimer's disease and its not nice. I am so scared.

My doctor has not explained anything to me at all. Today I am going to see a different doctor in the same practice to try and get some answers.

I feel totally wiped out, sad, alone and afraid. I never expected this. My husband and friends tell me to stop worrying as its not been confirmed and could be nothing. I think 4 issues on my brain may be more than nothing.

I live in Broadstairs Kent so a long way from Cambridge, but I would travel. Anything to solve this mess.

I want to know if the leg pain is connected or something different, as its hard to live with the pain and the weakness that makes me look drunk sometimes when I am walking.

Thanks again everyone for your support, it really helps x

[mel-21]

Hi dear

I am 37 years old with the exact same MRI and with your exact feeling and worries.

I am scared as well and I don't know what to do since I'm suffering from this pain for long time.

Here is my symptomps and my recent scared MRI result.

Hi

Here is my question. I hope I can get a help I really don't know where to start what to do. Beacuse of my age no dr take me siriously.

I keep googling about my problem and I keep coming up with GCA or Vasculities. But I don't really know which one I have.

Beacuse with GCA you should be taking meds right away while mine is for years now and with Vasculitis I'm not sure.

I am 37 years old female. I should say that I've suffer from anxiety for years. I think my problem begin with being anxious and up tight all the times. I remember years ago when the pain started it was from my back of left shoulder. There was a painful point there that I had to presure it most of the time hoping to get some relieve. Then the burning, itching and stabing pain begin to travel to the left side of my neck, then to the upper left jaw and teeth, then to the inner left ear then to the left eye and upper left side of my scalp. The pain would get to bad that I had to grab and pull painful area in my scalp to get some relive. Sometime, the pain would get better but other times no matter what I do never got better. Then the pain began traveling to my left arm, left under arm, left breast, left hand and fingers, then it would go down to my left hip and leg and foot. I should say that my Intire left side would get inflame. Many times I completed about the problem to different doctors like , dentist, optometrist, and my primary dr. But none took me siriously beacuse everything was normal therfire, anxiety was blamed. Recently I went to my dr and pushed him to order me a brain MRI to see what's going on.

Finally he did and my result was shocking. But still he says nope the radiologist makes big deal out of it beacuse my CRP and ESR or ESD both were normal. He ordered tests like anti body ANA which was normal. Lupus was normal. Celiac was normal.

Therefore, he told me there is nothing abnormal in your blood tests to make me doubt.

Only my MRI was off and abnormal which he says it can be normal as well.

Here is my MRI result

Findings: Normal Configuration of the intracranial compartment and posterior fossa. There is no hydrocephalus, intracranial mass, hemorrhage, diffusion restriction or significant abnormality demonstrated extracranially. Several nonspecific punctuate FLAIR in distribution. In pationet of this age, these are atypical, and could be inflammatory-infections, demyelinating, chronic migraine, vascular, and not completely excluding Vasculitis. Intracranial dominant flow-voids are identified in usual fashion.

Impression:

Tiny scattered frontoparieatal FLAIR hyperintensities are distributed largely peripheral. In a pationet of this age, with this MRI appearance, it could be due to variety of etiologies. Further work up is therefore recommended clinically. Further work up is therefore recommended clinically. Further radiographic work up may include MRI using Gadavist, cervical MRI if indicate, and follow up MRI for stability advised.

So I went and saw a nerolgyist as well. He checked on my neurological signs and thanks god they were all normal. He told me that he will look at the MRI images and will talk to the neurologist as well. He also said it had to be coronation between the images and body symptomps he will not diagnose anyone only by imeges.

I keep complaining about my left side pains and itchings but none listen to me.

I even went to cardiologist and asked for heart and neck ulthrosound. I don't know if this ulthrosound is the same for the GCA. They checked in my carotid arteries to see if there was any blockages in both side from the front side of my neck and both showed normal. Again I don't know if they do special ulthrosound for the GCA. Or for they do it from the back of the neck or the temples.

I was in the pain right now and I had to pull and hold on the life upper side of my scalp to relive the pain but this time I felt pain and burning sensation traveling to my left temple, left eye and left ear.

I could feel the plus. Honestly, it scares me beacuse Google searching says this is a siriouse disease which should be taking care of right away.

Mine is years now and i am afraid that I might get blind in the left eye or have a stoke.

Sometime the pain leaves me for two to three days but it comes back again specially when I am nervous.

Is this GCA? Or something else? What should I do?

What are your symptomps? Are they like mine?

How were you diagnosed? By MRI, blood works, body symptomps or biopsy.

By the way, I'm in Califirnia and I don't know if we have Vasculities specialities or hospital here.

I don't know what to do my doctors don't take it siriously due to my age. But the MRI result is making me crazy. It crates many what ifs in my mind.

I need help plz 🙏

Thank you