Forum

Neurologist Nightmare

I am feeling so stressed out at the minute I would love any advice or opinions please.

My symptoms started in March this year with burning pains around right rib cage which lasted 3 weeks. The following day my foot went numb and the day after my whole right side went numb. I had tremors and spasms in left leg. I have urgent urination ongoing. This lasted for 3 months until beginning of June when my foot etc got feeling back. BUT then a couple of days later I have the burning pain around my right rib cage again. I have fell a number of times as also suffer dizziness.

On my first visit to the neurologist he examined me and got his junior doctors to also examine me and give their verdict. They all said ms. He arranged a brain MRI which I had done. This showed a few foci in the front but not so many at the back ( in radiographer’s opinion ) . In her conclusion she said if this person is having persistent clinical concern, neurology assessment is recommended.

When I saw my neurologist two weeks ago he was really off hand with me, the opposite of the first visit. At the time I still had drop foot. I tried to explain how I had been feeling and gave him a small list of my symptoms since last seeing him. But he wouldn’t look me in the eyes and said there was no nerve damage in the brain and I don’t think it is ms. I pointed out that there was nerve damage and what the radiologist had put in her conclusion. He said he thinks I have a trapped sciatic nerve causing the foot drop and will arrange a spinal MRI, which I had done last Thursday. This was only my lower spine. I have since learned 67% of ms lesions are found in the neck area. But obviously he was not looking for lesions. Anybody who has ever had a trapped sciatic nerve will know the pain it causes and I have had no leg pain at all.

My GP does listen to me and has already said if we don’t get any satisfaction from this neurologist he will recommend another.

This is like de ja vue for me. As two years ago my husband and I suffered carbon monoxide poisoning. We were both rushed to hospital within three days of each other, my husband had a huge clot on his lung and I was put on oxygen 24/7 for six days. They done all blood tests etc and said we both had over three times the level of carbon monoxide of normal non-smokers. BUT the chest specialist would not listen to me when I tried to tell him what had been my pre symptoms. He said I had pneumonia and that was written on my discharge note. We ended up going to a chest specialist in Harley Street who looked at all our medical notes from the hospital and sent us a report confirming we were both poisoned with carbon monoxide and he would stand up in court if need be.

I don’t want to have ms as I have spent the last two years getting fit again. But I want to get to the bottom of what is causing all my symptoms.

What do you think I should do? I have another appointment to see my neurologist in a week or so.

Hi,

I had similar people’s with a number of neurologists and eventually after some research I paid for a private consultation and within a month I was diagnosed with ppms.

Find a neuro who will listen to you and respect your concerns.

Hope you get some answers.

Christine

hiya

i asked my gp to refer me to a different neuro. depending on where u stay that may not be easy but worth it in my opinion.

i transferred to another county and when useless neuro left i was referred back to original place cos a new effective good neuro was now in charge.

if and when he now moves on i feel am in a much better place to speak up for myself-took 12 years!

ellie

Thank you Christine and Ellie. I am thinking about my next meeting with my neuro 24/7. So worrying :frowning: I will listen to him but also tell him he is not listening to me. To say I could have a trapped sciatic nerve is just ridiculous as I have had no pain in my right leg at all. It just went numb.

But I am so thankful to have a good GP who does listen and will hopefully refer me to a new neurologist. If not I would think of going private.

Marjie x

Hi Marjie, what a pickle when a neuro dismisses what you are trying to explain.

We know if we have pain or not and I`ve NEVER heard of anyone suffering from sciatica WITHOUT pain! That kind of pain sure is felt and it does hurt!

It`s good that you have an empathetic GP.

I guess all you can do for the moment is wait for the appointment and results of the laest MRI.

pollsx

Thanks for your reply Polls. I feel he is just wasting NHS money on MRI and also a muscle test he wants me to have. I might pop into see my GP later this week and see what he advises me to do. It seems such a waste of time and money. I need to have a full spinal MRI to see if there are any more lesions there and maybe a LP. Limboland is not a good place to be. I try and not think about it but with all the rib cage pain etc it is hard to switch off. I am sure I will get sorted in the end :slight_smile:

Marjie x