Vasculitis in my Spine "Central nervous system... - Behçet's UK

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Vasculitis in my Spine "Central nervous system Vasculitis"

Zuzu798
Zuzu798

Just about over a massive flare. It came on sudden. Had a terrible migraine for 3 days with pain in my lower back, discomfort in my spine and pain in my legs that felt like growing pains yet I'm an adult. It was there constantly and nagging. Just felt strange. Woke the Sunday morning with not being able to move my legs. The pain went up a 1000% I could not even cry from the pain. My eyes felt like they where bulging out of their sockets. My husband rushed me to ER where luckily I knew the Dr. on call. I gave him my Professor's details and after speaking they decided on IV therapy. I received Solu-Medrol which is Methylprednisolone over the next 3 days they kept me on this. No position is comfortable. You can't see properly. You can't sleep. It has been 14 days now and for the first time I can walk without support, I can see properly again. Things I thought at the time would never be possible for me again. I want to warn other patients with symptoms that do not wait and ignore your symptoms. Do not ignore what is staring you in the face. I was petrified of going to my GP, I was scared I would get Corona by going out, this all could have been prevented I think if I went on an earlier lighter dose of prednisone. Now after seeing the Prof for my follow-up he told me what I had was Central Nervous System Vasculitis and it means my Bechet has evolved from normal Bechet to Neuro-Bechet a whole new chapter. Something so scary I do not want to even read about it. I prefer to stay positive ❣

12 Replies

Hi, bless your heart. Am so pleased you are improving.

Thank you for sharing this, it may help any one of us who should ever experience this in the future.

May your health continue to improve and try to have a good Christmas ♥️

Zuzu798
Zuzu798 in reply to Benne09

Benne09 Thank you for the well wishes, wishing you and yours an awesome Christmas too xx

TonyWT
TonyWTAdministrator

Agree with Benne, thank you for sharing this Zuzu, as it is really helpful just in case someone experiences something similar (which fortunately will be rare). So pleased you are recovering and can have the confidence that the clinicians know what they are doing and can help treat … and relieve the anxiety. Hope you can now enjoy the Christmas festivities (if applicable to you)/holiday period. Tony

Zuzu798
Zuzu798 in reply to TonyWT

TonyWT Thank you Tony and hope you all have an wonderful festive season too

Dear Zulu,I have posted before, I am mother to a 34 year old son who suffers with neuro-Behcets and has had it for many years. He is on palliative care and is prescribed opioids for his pain. It’s so severe and when I read about your headaches it was like hearing my son tell me about his headaches. Even with morphine his pain is crippling. He often cannot walk without stumbling or falling, his headaches last for days and he has complained of feeling his bones literally aching, and described it as having the worse type of growing pains imaginable. So reading your words moved me to feel compelled to tell you that what you have is also shared by someone living in the US and I am sending you healing thoughts. You may need some pain management. The prednisone is tough to take. I know how it really wires him up something awful. The meds are difficult to tolerate, but at least make life bearable. His eyes hurt him and he often has uveitis but overall we were told that as long as he doesn’t lose his eye sight he is doing pretty well. Hard to listen to a doc say this - but comparatively speaking, I guess it’s real. I wish you only better days and a blessed holiday. Please try to get some relief from the pain, if it’s possible. I know we went for years till we found a palliative care doc who is compassionate and I believe, has saved him, it’s what has allowed him to continue to live. I hope you never have another flare. Hugs from this side of the world - from someone who watches her son suffer every day.

Zuzu798
Zuzu798 in reply to CJBmom

CJBmom My heart goes out to you and your son ❤🧡 The pain is indeed difficult to bare, I have received some morphine at the hospital but have had side-effects to those. I'm a bit sensitive when it comes to pain medication. Thank you for your kind words and words of encouragement. I wish you and your son only the best and send you healing thoughts too xx

Thank you for sharing your very scary experience and I am pleased to read you are recovering. I have to say the symptoms you experienced and many of those associated with Central Nervous System Vasculitis sound like many of the things we simply would ignore and try to carry on with. You being able to involve your consultant early on is really important since few consultants I have experienced have limited if any knowledge of Behcet's.

Take care and wishing you a speedy recovery. X

P.s. When you are in a position to wish to read about Central Nervous System Vasculitis the following is a very good place:

ninds.nih.gov/Disorders/Pat...

gillianTS Thank you Gillian, I will go have a read. Have a great festive Season

Oh Zuzu how terrifying.Thank goodness your husband got you to hospital. I am so pleased that you are improving and more comfortable. Such a dreadful ordeal for you I am so sorry. I hope that you continue to improve and that you and your family have a peaceful, happy Christmas x

CecilyParsley Thank You Cecily for this kind message and well wishes. Hope you have and great festive Season too XX

I’m so sorry and I’ll be praying for you Zuzu!

Zuzu798
Zuzu798 in reply to Jennifer4284

Thank you so much

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