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How to deal with the diagnosis frustration

Hi, I am 28, and since July 2014 I have been experiencing vertigo like symptoms for a while. Included in that is uncontrollable leg shaking on occasion, tingling in arms and legs, painful headaches, travel sickness, difficulty walking and reading, trouble concentrating, lose of fluency in speaking, bad taste in mouth and sore eyes. I have had a ct scan, mri and lumbar puncture, as well as tests for neoplastic syndrome. My mum has MS and my GP thinks I have MS (the lumbar puncture came back with increased protein in the fluid). The neurologist, on the other hand, thinks it’s all down to stress (even though I’m not stressed) and their idea was to change my antidepressants, which didn’t work. To be honest, though, they really didn’t seem interested in me, contradicting themselves on many occasions, not listening to what I was saying, doing all the same tests, never once saw the same neurologist more than once, and they kept saying I will be better within 3 weeks. . I have been investigated by a clinic specialising in neural viruses, but they have discharged me as they cannot help, leaving me with thinking it cannot be a virus. No speech therapist or physiotherapist have been able to help and ended up discharging me from their care, leaving me nowhere. The last doctor I saw referred me to the ear, nose and throat clinic, who have already said they won’t take me because is a neurological problem. What can I do to help myself while I’m waiting for the medical profession to diagnose fully? Is there anywhere else I can go? I really don’t mind what it is, I just want to know if this is permanent or temporary. Thanks Gary

Hello Gary

Sure you aren’t stressed?, you sound it. Being undiagnosed is stressful. Being told by GP it is ms is stressful , mum with ms is stressful. These symptoms may very well be stress at a subconscious level. Will it make you happier to have ms confirmed? MS isn’t really hereditary and you only have a slight increased risk as your mum has it. Have you thought about counselling and maybe a medication change, perhaps anti- anxiety tablets?

I think there is not much you can do bar go back to gp and the neurology. If it is ms, it will show itself on mri etc. I think you should give yourself a break and try to enjoy life. Treat the symptoms and have faith this will get sorted

Best of luck to you

Kat x

p.s I’m no expert but your symptoms sound more like anxiety than ms to me. This is a good thing :slight_smile:

p.p.s your gp is not qualified to diagnose ms.

My mum was diagnosed over 20 years ago, and I don’t live with her anymore. I’m really not stressed, apart from health, I have a good life. The changing of my meds made me feel worse, not better. I really don’t care what it is, I just want to know. As a Jehovah’s witness, I believe that at some time in the future mankind will be restored to perfect health. It would be easier to plan the short/long term if I knew what it was. I appreciate the neurologists are the only ones who can diagnose, but the ones I’ve seen haven’t even looked at my history or test results when I had an appointment, so I really don’t trust them.

Hi smitg

where was the neuro virus clinic you went to?

also how have your exam results been so far the LP and mri?

I went to a facility in Norwich. Was assessed for over an hour by their doctor before saying he couldn’t help. My LP came back with abnormal levels of protein. The results of the MRI are a bit more difficult as the doctor didn’t look at it until my appointment and said he had to speak to the radiologist before saying anything, which he never got back to me.