Undiagnosed

[Kernowdot]

Been having issues since August, but feeling pretty low today. I had nerve conduction studies and EMG, which I was looking forward to. I think now I’ve had them I’m playing the waiting game again. Tried to get some initial findings from the dr, however didn’t get any.

I’ve had lower back pain on sides since August, followed by incontinence with no sensation of going. I was referred for a flexible cystoscopy and after the test I had pins and needles in both feet. The consultant said this was fine and discharged me. The following morning I couldn’t pee, so went to a and e and was fitted with a catheter. This caused a lot of discomfort and two days later, I lost the feeling between my left hip and knee and five days after this was admitted to hospital for a few days with sepsis.

The catheter was in for just over 3 weeks and leg feeling was either non existent or painful with pins and needles on my jaw and twitching in legs and arms.

Now, my leg feels like it’s secured in a vice, with burning and stabbing pains. Two toes feeling like someone is wrapping them tight in string. My hand and feet still twitch and all of them at different times have pins and needles. I have pain at night on the back of my right rib cage (lower).

If anyone has any hints or tips, or can advise if they’ve had similar. If so, what tests help get a diagnosis and on the right road to some sort of pain relief that works at least some of the time.

[Konagirl60]

It sounds like neuropathy of some sort. Get an advocate if doctors keep gas lighting you. Have you been offered any Amytriptyline or another nerve pain modulator?

[Kernowdot in reply to Konagirl60]

I was on max dose of Amytriptyline for approx 2 and half months, however drs swapped it for pregabalin as they thought it was affecting my heart. I had to trips to A and E in a short time frame due to this.

Amytriptyline was better at managing the pain, didn’t take it away, but made it manageable 50-75% of the time. Pregabalin is not as good and heart rate still high, just not quite as bad.

GP is waiting for results from nerve conduction before changing meds, which I can cope with, as long as they do it.

[Konagirl60 in reply to Kernowdot]

I hope nerve conduction testing results will be assessed soon. Good luck.

[Hedwig121]

Hi, you must be feeling exhausted and frustrated. You don't mention when you had the EMG and NC tests. Have you been given a follow up appointment with the Consultant who ordered them? If you haven't, phone the secy and ask when your next appointment is. You can ask your GP for copies of all your clinic letters so you know what is being said. When you see your Consultant (Neurologist?) ask for a copy of the EMG and NC test. I had terrible migratory pain too and had loads of tests and appointments with different specialties. To begin with I was sent for CBT but thankfully I was eventually diagnosed with an autoimmune disease. It was only through keeping copies of clinic letters and test results that I got a proper diagnosis.

For pain control, I take the maximum dose of Pregabalin/Lyrica and a tablet that usually given to people with Parkinson's. I get leg spasms and pins and needles so Cabergoline helps.

I hope that you get somewhere. If all else fails, keep pitching up at A&E.

[Kernowdot in reply to Hedwig121]

Thank you for your reply.

I wrote a message on two different forums and the reason was because yesterday I felt really low.

The reason for feeling low, was because is had the NC and EMG yesterday. (Im not expecting miracles). I think I was really looking forward to having the test and now I’ve had it, I’m stepping in to the waiting stage. That’s why I thought I’d reach out, but also read past posts.

I was hoping the dr carrying out the test would say something like “some of your nerve messages appear slow” or “at first glance all seems in or close to range”.

My neurologist has said due to COVID he is trying to get first appointments with all his patients first, so could be months before I see you again. However, as he knows another dr ordered these tests, he has subsequently said he will issue a review appointment based on the results. (Progress at least). I chased his secretary for next steps after a MRI and was told patients shouldn’t be contacting as adds to the workload.

I’m hoping to get results in the next two weeks and hopefully my GP can add pressure to neurologist to see me soon.

[Kernowdot in reply to Hedwig121]

What is Caberlogine? Is it over the counter?

[sandybabes]

Keep on chasing and enquiring for an MRI. DO not take no for an answer. It could be so many things. Have they ruled out MS?

[Kernowdot in reply to sandybabes]

They did a MRI in December (no contrast) and said no lesions in brain or spine so can’t be MS.

I’ve heard some people say that there lesions only showed under contrast. GP said to raise with neurologist, but he believes that something would show with no contrast and adding the contrast would confirm what it is.

So according to above, MS is ruled out, although I’d like to raise this with the neurologist when I see him.

[sandybabes in reply to Kernowdot]

Glad it’s not that. Keep going and be strong

[Kernowdot in reply to sandybabes]

Thank you.

My doctors have it on file that they can speak with my girlfriend, so she can chase things for me too. At least this removes some frustration.