Hello, sorry to be asking a question that I assume is often asked, but I am having difficulty and really need some advice. I was diagnosed with ME about 10 years ago. My symptoms vary and are not always present. I have never seen a neurologist and I am wondering if this is an avenue I should investigate?
A brief History… During childhood I suffered bad EBV. Back when I was diagnosed with ME, I was giddy (faint) weak and suffering from fatigue. I had only what I could call “a dead leg”. A couple of years on I became confused and started having bad memory problems. I lost my concentration and was no longer able to read or study. I had an episode of speech difficulty (confusing my words) but this was short lived. I became unable to learn new things, it appeared I just couldn’t remember. I had numerous episodes where I couldn’t remember why I was university (the shop, the bus stop, etc) or even how I had arrived there. I also suffered some mobility problems, I put this down to my general weakness and giddiness.
Since my late teens, it has been known that heat makes me worse. I get very giddy, sometimes my vision appears blurred or it feels like reality is moving. This happens in a hot bathroom, kitchen etc. I started having trouble with speed and distance during my mid 20’s. I have walked into numerous objects (the worst being a poor old blind man and his dog… I felt so bad!). I can see the objects, but they are either not where I see them or I am not walking in a straight line… I can’t tell what happens really. When I become confused I sometimes feel very ill and struggle to grasp things or I can equally feel fine and do something stupid like to wait for the green man to turn red, before crossing the road.
Whenever I get a viral infection, my symptoms seem to either worsen or reapper (if I am well). It can take me months to make a full recovery. During this time, I suffer a lot of pain. I get lower back pain and my dead leg returns. I suffer headaches and fever (mostly night sweats). I have had trouble with my vision. Almost like ripples (only in the corner of my eye). I was told this was a migraine without the pain. My vision also blurs, but only with feelings of being giddy.
Most recently, I began having tremors and shakes. The tremors are mostly in my right leg, but bad enough to make my whole body shake. This has happened on about 6 occasions, when standing. I had an ECG a few months back because my chest felt like it had pressure on it, this feeling returned on several occassions. I also felt tiny (thumb sized) burning sensations in the center of my back. I have experienced spasms and tingling in my legs (mainly the right).
I often have a cough. I also get sore throats, swollen glands and I now appear to be suffering from aniexity or depression. These symptoms are bad enough to have taken control of my life and I am looking for advice to help me take that control back.
Today, my doctor checked my eyes with a little torch and asked me to touch my nose etc. I can pass these tests at the moment. Due to this, he said that I have nothing wrong with me that would suggest I should see a neurologist, but I can see a psychiatrist if I wish. I have agreed to this because I can see no harm in it and I want answers whatever they may be, but I have seen one before (back when they diagnosed ME) and I was told I am fine as far as mental illness is concerned.
I would just like to know if a neurologist might be helpful. I’d like to think my doctor is right, but thought I’d ask the opinion of others who have travelled a similar path. Any advice would be welcomed. Thank you for your time. I hope everyone is well.