Help please!!!

[Suzywhizzo]

Dear all,. I have been trying for over a year to get a diagnosis of what is going on with my body. I have been having pain under left rib cage, pain now going into my back and numbness in my hip and pain going into my groin, down back of thigh into calf and down to ankle. It feels like my blood is not flowing properly.

I have had lots of tests, but cannot find cause of this pain which is getting worse daily. I am taking over the counter tablets, but nothing is hitting the spot.

Does anyone have any ideas as to what is going on please. I have just had a positive ANA blood test and a negative ENA. Any information would be really appreciated.

Thank you

Suzy

[Suzym2u Moderator Vasculitis UK]

We really need to discuss what you have written above in much more detail can you ring the helpline or write to John Mills [e-mail] 03003650075 he will help.

[Suzywhizzo in reply to Suzym2u]

Hi sue, thank you for your reply. Is there a good time to call, as u have tried this am, but have just got the answer phone?

Thanks suzy

[Suzym2u Moderator Vasculitis UK in reply to Suzywhizzo]

John has been to a BSR meeting today in Birmingham. If you had left an answer on the answer machine he would have returned your call this evening.

He will be in tomorrow morning and Friday too

Best wishes

Susan

[AndrewT]

Yes, as Susan Mills says, please do contact John, he is very knowledgeable.

All I can add is my prays and best wishes. I really hope that you feel better soon.

AndrewT

[Suzywhizzo in reply to AndrewT]

Thank you, I appreciate your reply. I have tried to call John, but just answer phone at the moment, so I will keep trying. Thanks suzy

[Suzym2u Moderator Vasculitis UK in reply to Suzywhizzo]

John has been to a BSR meeting today in Birmingham. If you had left an answer on the answer machine he would have returned your call this evening.

He will be in tomorrow morning and Friday too

Best wishes

Susan

[mel-21]

Hi

I am new in this page and I like you have hard time to find a dr that could diagnose me. It's been years that I'm suffering.

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.

I need help plz 🙏

Thank you