6 months ago, after severe depressions that didn't respond to a/d I was sent for brain scans.
The CT gave concern and they did MRI.
I was told (snd shown) that there were lesions (plaques) present and that the scan looked typical of MS but I didn't have the other symtoms expected. I was tested for everything else like Lymes, Syphilis, you name it. All were negative but the LP showed "bands" indicating autoimmune activity, symptoms and conductivity tests indicate "mononeuritis multiplex". I.e. lesions in several individual nerves.
6 months later they now belive the mechanism is a form of "vasculitis" that is detroying nerves rather than de-myelination. I know about vasculitis and some forms are terrible but we believe this will go away if we "reset" the immune system with chemo and massive steroids so I keep my fingers crossed.
Has anyone else had experience of "cranial vasculitis" or of brain plaques mistaken for MS ???
I have brain lesions that are described as " MS LIKE " . MS and every other auto-immune disorder has been ruled out, EXCEPT Bechet's disease, which is a small to med. vessel vasculitis. I am now said to have "probable" bechet's because it does'nt have any blood or spinal fluid markers to confirm a diagnosis. I am being treated with prendisone, and it is helping...but not enough for a remission. I think that we are going to have to add the cyotoxic drugs.
I have heard that if you have CNS involvment of a vascular disease, it is usually a lot harder to treat. Good luck. I hope you get well soon...and stay that way. Julie
Julie,
Thanks for replying, sorry to hear you have similar problems. I read about Bechets and I don't think that applies to me but these "vasculitis" conditions seem to be variations on a common theme.
This is starting to get me down, not just the neuritic pains and things but the fact that they can't come to a definite diagnosis but still want to poison me with prednisilone and chemo.
I just got the results of the latest scans and the good news is that there are no additional lesions, the bad news is presence of a "moderate sized arachnoid cyst". My Nuerologist is on vacation so I won't know for another 2 weeks what they propose to do about that.
I think the cyst must have been there on the previous scans but the last scan was on a new machine which I am assured is much more powerful and gives greater resolution.
I checked on treatment for the cyst, which I hope won't be needed, and it usually is surgical. I need that like a hole in the head!!
The peripheral neuritis is getting worse so I expect to start the prednisilone when my Neurologist returns, in the meantime it is just anti-inflammatories and lots of pain killers.
You are obviously further along with treatment so please keep in touch.
Could you please indicate, if possible, what symptoms caused you to have the scans and diagnostic tests in the first place ???
I have had so many problems over the last few years after a long fairly healthy time on this planet that I am convinced this condition has been there sometime.
I am also convinced it is systemic and affecting just about everywhere there are nerves in the body. Here are a few symptoms, roughly in chronological order -
- unexplained "foot drop" in left foot
- unexplained "RSI" in right wrist
- severe depression, later diagnosed "bipolar"
- unexplained siezure, at work!
- continued depressions that didn't respond to treatment
- neuritis in hands and feet, now also right forearm and left calf
- memory problems
- attention deficit
- changes in vision
- gradual change in hearing
- headaches, sweats, fatigue, nausea, gastric upsets
- now my left eyelid "droops"
It is sometimes difficult to tell what is just "wear and tear" but if you put the lot together I'm convinced my immune system is gradually attacking my body at random!!!
Not looking forward to steroids or cytoxics but if it fixes that lot of symptoms I'll do anything.
Let me know how you get on.
Brian
[This message has been edited by banjoboy (edited 08-12-2003).]
[This message has been edited by banjoboy (edited 08-12-2003).]
Hello there...I am pleased to see yours posts (thought sorry you have something to post). My husband has been diagnosed with behcet's for several years now, though the condition has probably been there much longer than that. We are very frustrated. His symptoms are worsening and he's tried a variety of medications, none of which helped, and our doc doesn't seem alarmed about the symptoms, though from research I am doing, I am concerned that it is moving into a "neuro-behcet's." He has severe migraines which are coming more frequently and don't respond to ordinary treatment. He has had to go to the emergency room four times since last November to be put on IVs. Because of that plus hearing, vision, and balance problems, I am concerned that he is suffering from "chronic intracranial hypertension." The doc did just put him on high blood pressure medicine (though he doesn't have high blood pressure overall), a calcium channel blocker, which is supposed to help prevent the migraines--though he's already had another since starting the new med.
He has all the basic symptoms of behcet's--mouth and genital ulcers which test negative for herpes, roaming arthritis, fibromyalgia-like pain, fatigue, irritable bowel/colitis, and pressure behind the eyes. His new symptoms include tingling and numbness in the extremities (but he is not diabetic), fuzzy thinking, difficulty finding words, blurry vision, "floaters" in his vision, an aura, light sensitivity, ringing in the ears, and imbalance.
This is all so frustrating. He had his eyes examined a couple years ago and they found nothing out of the ordinary at the time--we understand uviitis/iritis (sp?) is a possible complication of behcet's--suppose we should ask for another check. Just don't feel like we're taken seriously enough and are stuck with an HMO. I need a place to vent, to compare notes with others, and hopefully to find some suggestions for other treatments, avenues, doctors...
The Consultants are now agreed on the diagnosis of "systemic vasculitis" and I start on steroids next week for 6 weeks.
I'm not 100% happy that the diagnosis is implicit rather than circumstantial but it could explain most of the symptoms. At this stage brain biopsy is considered too risky even though a cyst could be sorted out during the same procedure but I have read that skin/nerve biopsy is often used to confirm diagnosis. I don't mind the odd scar and at present my insurance is still paying for all diagnostics.
QUESTION 1. Has anyone else been through this ??? Should I insist on every diagnostic opportunity ???
JH Centre for vasculitis lists variants of "vasculitis" as :
"
Behcet's Disease
Characterized by the triad of mouth ulcers, genital ulcers, and eye inflammation, but can affect different organ systems.
Buerger's Disease
Mainly affects smokers, leading to decreased blood flow to the hands and feet.
Central Nervous System Vasculitis
Very rare disease that may involve the brain and spinal cord.
Churg–Strauss Syndrome
Associated with asthma & allergies, elevated eosinophil counts, and vasculitis, with a tendency to involve lungs, peripheral nerves, skin, kidneys, and heart.
Cryoglobulinemia
Characterized by recurrent purpura on the lower extremities, and often associated with hepatitis C virus infections.
Giant Cell Arteritis
The most common type of vasculitis. Affects people over the age of 50.
Microscopic Polyangiitis
A systemic vasculitis affecting small and medium–sized blood vessels.
Polyarteritis Nodosa
The prototype of systemic vasculitis, involving many different organ systems and focussed on medium–sized arteries.
Polymyalgia Rheumatica
A syndrome of pain and stiffness localized to the shoulders and hips. Often occurs in association with Giant Cell Arteritis.
Rheumatoid Vasculitis
A vasculitis that sometimes complicates the course of rheumatoid arthritis (RA). Usually occurs in patients with a history of severe RA.
Takayasu's Arteritis
A large vessel vasculitis that affects the aorta, its major branches to the extremities, and sometimes internal organs. Usually occurs in young women.
Wegener's Granulomatosis
A systemic disease that involves the lungs, kidneys, upper respiratory tract, and other organs.
"
My Consultants reckon that the differentiation is not clean and I seeem to lie inbetween or (god forbid) exhibit symptoms of more than one.
QUESTION 2. They tell me that just 1 week of steroids at 30mg/day will suppress nearly all symptoms and after the 6 week course I will feel like Superman. Then stage II is to wean off steroids and replace with less harmful immunosuppressives. If that can't be achieved then finally, and hopefully not, (mild) chemo.
Can anyone diagnosed with any of the above relate what happened to them, especially with around this dose of steroids ????
QUESTION 3. My Neurologist wants to "try" (I think take part in an experiment or trial) administering doses every alternate day i.e. 60mg every other day. He says research indicates that it is equally effective with dramatically fewer side effects. I am all for trials as long as they are not detrimental personally (i.e. on me) !!
Has anyone else tried this regime ???? Was it actually part of a trial ???
I have a lot of faith in the Neurologist, he wrote the standard text book for final year medical students in the UK (although he admits it is 10 years out of date!) and lectures/researches in addition to dishing out drugs.
I just want to keep faith that after what seems ages of misery I am not going to end up yet another "guinea pig".
Thanks to all that have replied, sorry about the long post again.
Brian
P.S.
Verga, I'm sorry I meant to also reply specifically but life has been a bit frustrating waiting for my Neurolgist to get back and my confusions come and go.
There is a lot of info available on the web, the extract I gave above came from the John Hoskins Centre but there is stuff from Mayo etc., just do a search on "vasculitis" to start.
The whole area of immune disorders is beyond the knowledge of general practitioners, let alone up to date research. They know what to do about arthritis but I wouldn't trust them beyond that.
That is not paranoia, my Daughter just graduatated in medicine (that is how I know Simon's book is current but mainly unread in the UK by any GP who graduated more than 5 years ago) and she will not advise beyond identifying the centres of expertise. She can not even identify "trials" in this select community of specialists, even though she has tried.
If you think you are not getting the best or most current advice then I recommend asking that notes be forwarded to one of these centres for assessment. An extreme is to contact them directly by email quoting your medics contact details. If they have serious concerns I am sure direct contact will either allay your concerns or provoke further activity from the medics. I hope my Daughter never finds out I said that outside the family circle!!
My thoughts are with you and your husband, the last couple of years have been disaster for my family and me. I keep hope that all will be revealed and then fixed. In the meantime all I can say is stick in there.
There is a lot I can say that I wouldn't normally put on here but if you want to converse then respond and I'll find a way.
Take Care, Brian
[This message has been edited by banjoboy (edited 08-28-2003).]
"Cranial Vasculitis" ?????? 
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