Confused and

New diagnosis and before diagnosis
1

Hi All,
I’m new to this forum, I have just joined after a confusing 1st Neuro appt yesterday.
I’ve been trying to understand what may be going on with my partner, so far this forum has been the most informative and constructive place to be, so I’m gonna reach out here and try to find some clarity.
My partner has been ill for 9 months now with a whole bunch of bizarre and debilitating symptoms including an admission to hosp etc and A&E a couple of times.
We wrote a letter to the Neuro in advance of appt to explain what has been happening, he’s been to other specialists along the way and so there is a lot of info to remember and P can’h think straight at all.
The Dr said within a few minutes, my partner (P) has ME. He did not examine him. P did not even leave his chair for the entire appt. He did not examine his eyes. Nothing. Talked forever about ME and did not once mention any other possibilities for a diagnosis.

P has, dizziness, pins & needles, extreme fatigue, black spot in eye, loss of preifirol vision( checked by optholamist /optician, P’s eyes are fine according to them), blurred vision, double vision, strobing of moving images, tunnel vision and ‘itchy’ pain behind his eye.
Pains in arms and legs and right side ribs
sharp pain in back of head/neck, squeezing headache, feeling like he will pass out
One sided weakness sometimes
tingling in various areas, hands, & toes, spasms in legs and arms
confusion of words, slurring of speech, can’t remember what he’s trying to say etc
Numbness in chest sometimes, fingertips and his face ( woke in the night with jaw and face numb)
Increased urination at night. I could go on but this is generally what has been happening.
Towards the end of the appt the Dr said, I’ll give you any test you want to prove you dont have to worry about having anything else.’ Suely this is not good practise? Felt like we were being bluffed here. I was reluctant to ask for MRI to check for MS or other things, but we did and he made a great point of booking it right in front of us. He has referred P for Cognative Behaivour Therapy as well and said just take painkillers and excersize.
We are very confused. Of course I don’t want P to have MS, or anyone for that matter but my worry is that this whole process is going pear-shaped already and we are missing the diagnosis
P is booked for just a MRi scan at this stage. Wondering should we try another neuro when results come through. Dr has not booked him back in so he’s sort of discharged?
Any comments are so very much appreciated. x

2

Hi Strawberry, it does sound like p has had a lot of issues to cope with lately. Trying to find any answers can be really tough. However you do have an MRI booked, if MS is the case, chances are that it will show up on the MRI. Even if this neuro believes it to be ME, if the MRI shows MS lesions he will have to change his mind. From what I can tell the sad fact is that for many people who suffer with neuro symptoms, it takes some time for the cause to become clear, and for others, the cause may never be found. (And often the symptoms go away as mysteriously as they came). CBT may be helpful - even if it doesn’t help to cure the symptoms, it may help P to cope with the stress this is no doubt causing. Some of the symptoms P is experiencing can be associated with stress so it may be that CBT can help to eliminate these and make the clinical picture clearer? Did the ophthalmologist do any tests re: P’s vision problems? In my experience, eye stuff is a good indicator of problems because it tends to be quite measurable, so harder for neuro to dismiss. Lastly, it may be worth visiting your GP - it may be that they can help to explain what the neuros reasoning is, and what their thoughts are on the next step? Good luck Leah :slight_smile:

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Hi Leah,

Thankyou for your feedback :slight_smile: We really appreciate you viewpoint on things and it’s a relief to feel a sense of support. I think you are right, vision problems are a good indicatior of things and so we shall ‘keep an eye’ on things with his vision and speak to GP about further investigations. P does worry about driving and so do I as it’s a element of his job.

Also keeping an open mind about ME, we were advised to read up about it- but so far I have not come across a great deal of evidence of vision problems like P has, compared with those suffering with ME, so I’m gonna find some kind of support from an ME group or forum to understand a bit more about it all. It’s a balance between keeping an open mind and being sensible, and in such a long time scale. I really empathise with everyones situations on here, months run into years.

Thankyou and best wishes toy you Leah

xx S