In Southern Generals still? Peripheral vision loss

[Jazzy21]

Still in hospital still have peripheral vision loss and soon other symptoms low vision balance problem memory loss. MRI clear lots of scratching out heads. Any advice wisdom.

[lesleyg]

Hi Jazzy

Just read your introduction, you certainly have had a hard road (as have most BD sufferers). No advice or wisdom other than to hang in there and know that there are a few of us who understand what you are going through.

Lesley

[Jazzy21]

Thank you just keeping all Chins up. I wondered if the eye sight problems and peripheral vision loss could be fibromyalgia. And BD

[andreafm]

Hi Jazzy

My MRI's have also all been clear but my neurologist says that the inflammation can be so defuse that it doesn't always show on the MRI. He diagnosed me with Neurobehcets due to continuous ESR/CRP's and the symptoms. I have peripheral vision loss and loss of balance along with a lot of other neuro problems.

Also, Dr Kidd [Neurologist] who is on the advisory board for the Behcets Syndrome Society says this in his advice sheet

"An MRI scan is a very helpful test and will disclose the cause of the neurological problem in around 80% of cases. In others the problem may be too small to be visible on the scan, or too diffuse within the brain to be picked up.

The link for this is

behcets.org.uk/Documents/we...

This may help you and your doctors. I am glad they are looking into it for you...let's hope it does keep them considering and looking into things.

Keep in touch

Andrea

[Sunset]

Hi Jazzy21;

Neurological signs of vision loss, and put. You know the indications for treatment uses. I never used them. Colchicum and Urbason retard 8 Mg (methylprednisolone 8 mg) used. The disease did not improve the findings. Never been treated since 1988 did not go to the controls. I seriously therapy findings suggest to you as to neglect the health worker.

I wish life without pain.

[jkdee]

Hi Jazzy, keep your chin up and keep positive... DON'T LET THIS LOUSEY ILLNESS BEAT YOU!!!!! We are all better than this illness. I was diagnosed yesterday as having secondary fybromyalgia after having BD for at least 12 years... and I have been where you are now scratching of heads even making me feel at though it was all in my head..... I am a lot stronger now and I am not afraid to ask any question no matter how stupid they sound and even quote things from Behcets society to put the seed into the doctors heads..... Take care and please keep your chin up !

[Jazzy21]

Still in the Southern General neuro ward. Peripheral vision still.list and sight still bad. Off course balance and memory poor. But MRI and all CT scans clear. Anybody any idea what is going on with me. Getting quite desperate as Sea don't know,much about BD.

[andreafm]

Hi Jazzy21

I am sorry to hear that you are still in hospital. I was wondering how you had got on.

Your symptoms are the same as mine were when I was diagnosed with neurobehcets. As I said above before the blood tests were showing inflammation then, although the brain scans were clear.

They talked about a Lumber puncture at the time, but in the end just got on and treated it.

Are making suggestions about anything and/or they treating the symptoms with anything?

I was given high doses of steroids to try and bring the inflammation down and my neurologist at my local hospital liaised with a consultant in London who was experienced with behcets.

In a lot of cases like this the doctors are deciding what it isn't, before deciding what it is and this does take time.

It is really frustrating and worrying and all hospitals seem very slow and silent, especially when they don't really know what they are dealing with. But I suppose that at least they are not sending you home yet, so they must be treating it seriously.

Good luck and hang on in there.

Andrea

[Jazzy21 in reply to andreafm]

Hi Andrea I have just been left while scans MRI and eye tests have been negative. When I came I first I was given high doses of steroid for the first 3 days I felt the consultant eye Dr didn't believe how bad my vision and peripheral vision. Did your symptoms improve and what did they give you. I need some idea so I can tell my neurologist. He hasn't a clue. Any advice greatfully recieved.

[andreafm]

Hi Jazzy

I know exactly how you are feeling, with the thought that Dr's are not really taking in how badly a symptom is affecting you. It has taken me a long time and repeating field tests frequently for my consultants to accept I do have a real problem with peripheral vision.

My eye symptoms have fluctuated and are worse than they were in the beginning, but I didn't have the Steroids quick enough when it first started and my inflammation has not been able to be controlled.

Having said that I know that some people have these symptoms and they do clear up and so I wouldn't want you to judge my experience as being the norm.

Did the steroids [albeit for 3 days] improve anything of your symptoms...as if they have you need to impress on the consultants that this has happened.

I am not sure what I can offer in terms of advice except what I suggested above in showing your consultants a print out of the advice sheet from the behcets society.

behcets.org.uk/Documents/we...

Is there somebody who can print this out for you and bring it into the hospital so you can hand it over to the Neurologist to consider?

I do hope some of this helps you

Thinking of you

Andrea