Neuro Bechets

[Alfaroo]

Evening everyone,I'm interested to hear from anyone who has been diagnosed with neuro bechets. How it was diagnosed and what symptoms you had/have?

My son who is 14 has Mucotaneous Bechets but I'm concerned he may have neuro.

Thanks in advance

Ruth

[Zuzu798]

Good Morning Ruth, after having Bechet for over 24 years mine was only diagnosed as a Neuro Bechet after I had a Spinal stroke. My best advice to you would be to see a Consultant at the Bechet centre of excellence. They deal with this disease daily and will be able to treat your son accordingly. To give you an idea of my very early symptoms - Ulcers in the mouth and privates and those where always simultaneously. They were also followed by periods of very bad inflammation in my joints. With me it was always specific joints that flared up. My next stage started with something that looked like a rash on my legs. I did not know it at the time but the red dots that kept appearing more and more frequently where signs of vasculitis. I started seeing these all over my body. I was on treatment for the vasculitis, I was ignorant and was even sent to a Neurologist 6 months prior to my stroke. I did not take my medication as prescribed and had I done so I would have been spared this horrible agony. I am now under the Neurologists treatment and the Rheumatoid & Arthritis Professor that treated me before. Please go onto the health professionals portal behcetsuk.org/ and please see them. All of the best Zuzu 🌺

[Alfaroo in reply to Zuzu798]

Thanks ZuZu798He has an appointment scheduled for June next year in London. He was diagnosed at GOSH and is on azathioprine but we have had to reduce the dose as it makes him vomit. He was previously on colchicine but this affected his liver.

He has always had extreme oral ulceration, rashes & joint pains with fever. But now has constant pressure in his head, vertigo like symptoms and his eyes sometimes get blurred. He is always fatigued. Can't really get him into school. His legs often feel weak & wobbly.

It seems to have evolved.

I'm sorry you have had such a rough time of it. I get fed up of being told he is just anxious.

Best wishes

Ruth

[Zuzu798 in reply to Alfaroo]

Hi again, azathioprine is a very heavy medication for a young man to be on, and under no circumstances is he anxious at all. This disease is as real as what you have seen in him. I even forgot to mention the extreme fatigue as it has just become such a part of my life. I wish there was a way to expedite this whole waiting period for you. I have been on Rituximab since my stroke so there is hope with different immune suppressants albeit the fact that mine is now extreme and there is no need for your son to be on such a heavy one as what I am. When I had flares in the beginning I was given Prednisone, that could perhaps help? it does not have such very bad side effects like the vomiting. Rheumatrex was another medication I was put on for flares in my joints, I still have to inject this once a week. I try and take as much water and then fresh fruit & veggies as possible to boost my immune system too. On the days I feel up to it I make batches of soups for the days I feel poorly to heat and eat for my hubby and myself. Soups are something that helps with nausea too especially when you suffer to eat with all this chemicals we have to push into our bodies. Be strong and I pray your son find the right treatment.

[rooser1]

I was dx off my verbal explanation of symptoms... as I saw my rheum when I was not flaring. I had Mris and countless bloodwork at the time... Mri's were clean with no lesions. But with each flare I would have Meningitis, wrist and ankle arthritis, oral and genital ulcers, some skin rashes, pitysporum folliculitis on the forehead.

I think the neuro is basically- do you have crazy headaches or migraines or meningitis... during my flares I could also barely walk and had balance issues.

I had my worst symptoms starting at 17 and ongoing to 25... started to ease up for me after that (36F now) with a ton of lifestyle changes (i was on 13 diff meds, now 0)

I would suggest to you to not ignore simple but consistent changes- adding in a b complex, and vitamin d. Sleep when you can, it will be a lot, and thats okay! Drink all the water, look into ketogenic diet. I still use keto from time to time to pull out of flares.

We run through vitamins a lot more than most since we have chronic inflammation. I also have been sugar free for over 10 years- this is what truly gave me my life back, this and B vitamins.

Tell your son, yes it sucks, you're small missing out on some things right now, but once you start the healing process... you get your life back and can become healthy for the late 20's and 30's. Healing isnt linear...you will have some set backs but you will learn your early flare signs and catch it better.

Its going to be okay, I remember feeling hopeless at his age.

[Alfaroo in reply to rooser1]

Aww this made my cry. I'm definitely going to pursue this, he has woken again today with a headache and vomiting

He feels so bad all the time.

[rooser1 in reply to Alfaroo]

if I were there today, I would start today with this:

Chicken broth for fluids. Pick any protein and vegetable for meals, fats are good and needed for this! Cut every carb for right now. It will take about a week to get into ketosis... I felt a difference around day 10.

I would also start him on b complex today, preferrably sublingual. give Tablets under the tongue or in cheek every few hours until about mid day (you cant overdose). Most drs will poo poo added b vitamins and keto but im telling you, many of us have had great success with diet modulation and cutting sugars.

look into keto, keep it simple. Its anti inflammatory if done with unprocessed foods.

some ideas for rn:

chicken salad with lettuce

salmon with brocolli and a spicy mayo

Turkey or ham and cheese roll ups

eggs and bacon/ sausage

steak and asparagus or green beans.

if you make a chili or any soups and it has some beans or potatoes in it, dont sweat it too much. the important part is to limit added sugars and processed carbs (pasta, bread, sweets, juice) I wouldnt do fruit right now.

Use anti inflammatory seasonings- oregano and rosemary are my gotos during flares.

[Alfaroo in reply to rooser1]

Thank you, this is really helpful 🥰

[Icefire in reply to rooser1]

I just wanted to 2nd this advice. I find a methylfolate supplement helpful and eating lower simple carb (potato, rice, flour, sugar) to be beneficial. I still have a little bit, but a few chips not half a plate full or a small spoon of rice baulked out with cauliflower. (I am cooking for rest of the family, otherwise I might skip them completely. We cook mostly everything from scratch where we can. Look at ingredients and don't eat anything you can't find in your kitchen on ready made foods.

Lots of veg but not so much of the startchy ones.

Again I was really sick at age 14. I live a relatively normal life now. I have a few mild flares here and there but can usually put it down to food that I've eaten, stress or illness kicking up immune system. I think it's been 3 years since I had steroids. (Fingers crossed). And I declined the Colcerchine as once I started the dietary changes I've managed to bring it under controll.

Good luck.

[Icefire in reply to Icefire]

P.s. I'm not sure about neuro Bechets but certainly had headaches and severe brain fog with extreme fatigue as a child.

[Alfaroo in reply to Icefire]

Thank you. I am going to show him your reply. I think he believes he will never feel any better so this is really positive. I will push the B12, he has vitamin D3 with K2.

He will love the dietary suggestions 🙈🤣

[Butchcassidy]

I'm a neuro behcets patient in Belfast Ireland.This last 5 weeks I've had brutal headaches. Landed to see my GP who referred me to the hospital incase it was a blood clots. The migraines are very difficult to manage at times and it feels like an animal is trying to burrow out of my brain. I'm on imfliximab infusion every 6 weeks but it's effectiveness is weakening as time goes on

[Alfaroo in reply to Butchcassidy]

Hey, thanks for your reply? Did they diagnose you on symptoms or did you have any diagnostic tests?

He's definitely getting more head symptoms now as he gets older.

Best Wishes

Ruth

[Butchcassidy in reply to Alfaroo]

Diagnosed with the symptoms.Ulcers/ fatigue/brain fog/ clots

The head symptoms are getting harder to manage and definitely getting more frequent.

[Alfaroo in reply to Butchcassidy]

Thank you. The more I read the more I think this may be the case for him.

[madrandy in reply to Butchcassidy]

Hi, I just wanted to say I’ve been on remicade for 7 years every 8 weeks and about two years ago it stopped wording for about six months, one day one of my nurses mentioned about how everyone was switched to a generic form several months back. I brought it up with my doctor and she prescribed only the brand remicade and I turned out to be the reason I was feeling run down with much more flares.

[muscicola]

Hi, from Belgium here. I was diagnosted with Angiography retinal and brain, spinal tap. After Hemiplegia left and severe panuveïtis.

[Alfaroo in reply to muscicola]

Thank you for your reply.

[USPolarBear]

Hi Ruth. I'm so sorry to hear what he is going through. I'm in the US and here are the tests they used:

DNA- HLA B51 gene variant (70% of Behcet's patients of Persian decent have it, 40% of Behcet's patients of European decent have it. I do not have it.)

Skin pathergy test (skin prick with 18G needle and if you get a weal within 24 hours then positive. I have this.)

Oral and genital ulcers with negative antibody tests for Herpes (I have this.)

Eye scans for Uveitis (I have this.)

Brain and spinal scans, MRI, MRA and CT (lesions are large and bright, like MS but larger.)

I do have food triggers. Elimination diets helped a bit, but they take a long time.

I'm a scientist and I was able to find a company that analyzes a fecal sample, provides a list of foods to avoid, limit or increase and can custom blend pre and probiotics to adjust gut biome imbalances. The company is called Viome but I don't think they exist in the UK. Hopefully you have something similar if that is something you want to explore. Biggest difference after I made the changes was my exhaustion level, but brain fog and headaches also improved.

I also have environmental triggers. Mold, latex, and 2 kinds of tree pollen. I have to avoid what I can and take steroids sometimes to deal with environmental caused flares.

I take two Biologics, anti-inflammatories, and other meds for breakthrough symptoms. It does get much better, but it does take some time.

Hoping for you both.