worried about upcoming neuro appointment

Im getting a bit worried I will be fobbed off at my neuro appointment. I was referred because of pins and needles and numbness last year in hands and feet, and now burning and pins and needles in my head/ scalp which Ive had for 4 months and isnt going. I was diagnosed with chronic fatigue which ive had for 4 to 5 years, but over the last few weeks the fatigue has been unbearable, the worst ever. Ive had a few falls, I think because of balance, as it often feels like im walking on sponge. It takes me ages to walk anywhere, not that I can walk far without being exhausted. Ive had an odd feeling in my neck like someone is squeezing one of the long muscles intermittently, and over the past few days in the evening, I have had a cramp under my breast, alternating sides, like my bra is really digging in, even if Im not wearing one. Prior to the deterioration in the fatigue, i was having real issues in the evening with urgency to go for a wee although this isnt as bad now. To me, this list just looks like Ive researched the symptoms off the net and Im putting it on.

Has anyone else felt like this before their first appointment? How likely do you think the doctor will believe me enough to do some tests? I can’t bear the thought of being sent away with a few anti depressants, the GP tried that and they did nothing except make me emotionally unwell, as I wasnt depressed!

Im not sure what Im hoping to hear, just need some reassurance, if you can help. Thanks x

Hi Deadchick, Try not to jump the gun, or let past experiences with the GP colour your expectations. Treat it as starting with a clean slate, with a new person, and give him or her benefit of the doubt. Don’t assume they’re going to do be dismissive, when there is nothing so far to suggest that. The symptoms you describe don’t sound normal, and don’t sound like “just” depression (as debilitating as that can be). In particular, falling over “a few times”, in just a few weeks (I assume that’s the time period you’re talking about, and not the whole four or five years), doesn’t sound psychological at all. Make sure you list ALL your symptoms for the appointment, most serious first (in case you are pressed for time). But do NOT just hand over the list. Use it as a reference for you, to talk through the things on it. If possible, try to give some idea of when/how often these things occur. You don’t need time and date, but is it every day, a couple of times a week, every month or two, or what? Do you notice anything that tends to set things off? Or helps relieve them? I would certainly NOT mention MS, as I agree that yes, that could give the impression you have Googled, and are not making things up exactly, but just suffering from health anxiety, and excessively preoccupied with looking for symptoms that support your suspicions. Don’t venture anything about what you think it might be - just stick to the facts of what’s been happening, as walking in convinced of a serious illness is sometimes an indication the patient’s problem IS anxiety. Try to keep in mind there many possible explanations besides MS - you are not going there to prove it’s that, but hopefully to find out exactly what it is. As you’ve already realised, on-the-spot answers are unlikely with things like this - you will probably be referred for further tests. Tina x

the gp gave me anti depressants to deal with the pins and needles in my scalp, rather than to treat depression ( I wasnt depressed), but it made me a bit manic, and caused an increase in my heart rate, so we stopped it. The gp had suggested over a couple of appointments that I see a neurologist, but I didnt want to cause a fuss, now Im worried that im still causing a fuss!!

You’re right though, I am making a judgement about the doctor before giving them a chance. Its just so easy to do when Ive had poor experiences in the past with doctors. It would be easier I think to go to these appointments if I had someone with me, but my partner isnt really all that helpful in that respect.

Hi Deadchick,

I was in exactly this position when I went to see the neuro. When I finally got the referral, the GP said something along the lines of “Well I’m not going to fight over this” and gave me the appointment.

However, the neuro has been the perfect professional. I limited my symptom list to the general ones I’ve been having. I didn’t try to question her about what she thought it was, knowing that without tests she couldn’t say very much anyway. I didn’t mention MS, B12 or anything vaguely connected to potential causes. She checked out my reactions and walking gait and did a pin prick test on my limbs. Then on second appointment, just two weeks later, a nerve conduction test.

Since November when I last saw my GP, I’ve been fretting that I was making too much of this: maybe, like my GP thought, my arm (muscle pain is now limiting usage) was a completely different matter to the rest of my symptoms. I haven’t been on this forum recently, because I thought that I would probably get turned away from the neuro, without any further action and that I should just put up with whatever was going on and stop worrying about it.

Turns out that its the GP who now has egg on his face.

So stop worrying. You have a right to treatment. Be as calm as possible at the appointment and let the neuro do their job.

Astro x

proper bricking myself now. Just found out ill have to get a cab there too. Ah well.