Confused by neuro results?

Had MRI results today scan all clear which is a good thing but they can't explain why I am suffering with a weakness on my right side which gets much more noticeable when I get fatigued!

Neuro agree with rhyme that I have behcets after looking at my list of symptoms but said my other symptoms don't link to behcets as they are sensory???

They are referring my scan back to radiologist and depending on that might do a lumber puncture test to be sure??

Been refered for nerve test too?? Neuro said due to my b12 being 130 two years ago this could be side effects and damage from that???

Anyone else had a similar experience as I feel like it's one step forwards and 500 back!!!!!

7 Replies

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  • Hi there...I too have the weakness down one side, loss of balance, sight problems, difficulty in swallowing, bladder and a whole realm of other symptoms including sensory problems with numbness, tingling, heat and coldness.

    When I first got these symptoms the Neurologist I was under, didn't believe it was Behcets and decided it was Chronic Fatigue Syndrome instead. I was very concerned and felt just like you at the time....1 step forward and 500 back.

    By fluke I ended up being referred by the eye department to see a different Neurologist at my local hospital regarding the eye symptoms and the one sided weakness. The eye department had first thought that I'd had a stroke. At the first consultation he immediately said I think your neurological symptoms are coming from Behcets Disease.

    My MRI was also clear but was told the inflammation damage can be so diffuse that it doesn't show up on an MRI. My neurologist accepted that it was inflammation in the Brain Stem and Spinal Cord and began treating me with high prednisolone and then Immune Suppressants.

    Some Dr's still don't seem realise that you can have neurological symptoms with behcets, but it not actually be Neurobehcets.....this information is reflected in the C.O.E Neurologist Dr Kidd's factsheet for Neurological Symptoms of Behcets....I have given you the link below

    behcets.org.uk/wp-content/u...

    It does sound like your neurologist is doing the right thing for you in looking again at the MRI + the EMG nerve tests and Lumber Puncture....so it would be good to try and stick with him/her

    If your neurologist isn't completely convinced....he has to make sure it isn't the B12 damage from the past, before giving you the appropriate treatment.

    You might want to copy off Dr Kidds factsheet to show your Neurologist that you can have sensory symptoms with Behcets.

    It is horrible and frightening waiting for answers and we are here to listen and help if we can

    Good Luck...I hope some of this helps and let us know how you get on.

  • Hi there again....know exactly how you feel about bouncing from one ologist to another as my medical history is also seeing one Doctor after another for many many years...you will get there if you keep going and have to say that the Knowledge of Behcets is much better than it was when I was first suffering over 20 years ago. I think that some of this is down to us patients getting more involved with our Healthcare and in effect teaching the Doctors that we see.

    I have stuck with the neurologist that diagnosed and treated me in the end and have been with him now for around 9 years. He says himself that it has been a learning curve for him as much as it has for me...in some ways.

    I think your Neurologist may mean that there are more than one reason for sensory symptoms and he has to be sure that it is neurological and brain connected, rather than another reason...such as the B12 deficiency and residual nerve damage and weakness that it can cause.

    Maybe you can ask him what he means next time you see him...it helps to get a dialogue going with the Doctors that are treating you as it builds up trust and understanding.

    hope this makes sense :)

  • Hi Andrea,

    Although at the moment (thank God) my disease is almost under control, but I get dizzy spells and a strange vertigo if a lot of people are walking toward me. It feels as if I am going to fall over, but I don't feel panicky.

    I have mentioned it to my consultant, but he did not seem too interested.

    These symptoms have crept up on me over the past two or three years, and I wonder if it anything connected to BD.

    Suzanne

  • yeh, Suzanne I get what is like a form of disorientation which feels as if I don't belong on this planet and gravity is against me....making me twice as heavy as I actually am !!!

    At one time sloping pavements sent me crazy and ended up hanging onto my husband as if I'd be swept down the slope, if I didn't hold on tight. It is still there but I think I have got used to it...so not so abrupt.

    Also walk into glass doors as if they weren't even there. My special awareness is very poor and find myself holding out my arms and hands in front of me so I don't crash into things.

    The world feels alien to me a lot of the time...but I have got good at bluffing it, thankfully

  • I am so gratefull that I found these posts. It is like I am reading about my own life. I have almost the same symptoms but MRI and lumbal punction did not show anything so they do not think is neuro Behcets.

    However I still have all the same problems as you seem to have. Some days I fell like I am going crazy.

    My left side is the weak one and some days I also have difficult to walk when the leg is not want to take a walk with me:-) I have been falling flat on the ground many times.

    Dizzy spells and jelly-brain with fog- yeeah!

    I also have a "thing", sometimes a sound can send a sharp sensation all the way from my head to my toes and at the same time I feel dizzy. So thank you for sharing - now I feel almost "normal" , as normal as we Behcet-tigers can.

  • I too have this blurring and tingling and one sided weakness that makes me lose balance and fall over. It is very disorienting. I broke my shoulder in two places through falling when like this, so i always use a stick when it comes on now. I had a clear MRI and they now think these symptoms are due to migraine. There is always a headache, not a bad one but quite distinctive with a peculiar sick stomach feeling. I had classic migraine with aura for about 8 years, then it disappeared when the 'numb and stumblies' started. It often precedes a flare of ulcers and other BD swellings and lesions, and the weakness lasts until the flare is over and the lesions have gone. I was going to start migraine meds but colchicine seems to be calming everything fairly well.

  • Hi! I'm new here and live in the U.S. I wanted to let you know you are not alone. I was dx with Behçet's disease 10 years ago, but have had it since I was a child. I have MASSIVE sensory/neuro symptoms. My MRIs are generally clear so I even doubt myself sometimes. But my rheumie says my symptoms are definitely from the Behcets. Today is a bad day, so I'll tell you my symptoms. My entire body is covered in pins and needles and numbness. I feel spaced out and disconnected from everything. I have left side weakness that worsens the tireder I am. My left knee "gives out". I had a three day headache and I'm having various twitches all over my body. Plus my vision is blurry and my ears feel clogged. I hope it makes you feel better to know you can have these symptoms and a clear MRI.

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