Difficulty getting a diagnosis

New diagnosis and before diagnosis
1

Hi everyone,

This is my first post, and I’m looking for some advice and to hear from anyone in a similar situation.

I’ve been struggling with neurological problems for the last 2.5 years. I’m a student so I move around a lot and have seen quite a few different people, and throughout that time various neurologists and GPs have mentioned MS. My first symptoms were weakness, pain, and a cramping sensation in my legs, it lasted for about 3 months and at one point was so bad that I couldn’t stand- and then one day it just stopped. I had blood tests and an MRI and everything came back clear, and my neurologist said it was probably a one off and wouldn’t happen again. I was symptom free for a few months and then started to get pain when I went to the bathroom (and ended up on a wild goose chase with urology). In December last year my legs went again for a few weeks and then stopped again, and then in February they went again. The weakness stopped in March but ever since I have had a burning sensation in my pelvis when I walk too far, my legs still get the cramping sensation (mainly in my left leg),I feel tired and heavy some days, and am still having pain when going to the bathroom.

My GP was concerned that this seemed like a second distinct episode and I was referred to see a neurologist. I was fast-tracked and had my appointment this afternoon- and I feel completely helpless having now spoken to the neurologist. I was not particularly symptomatic today (ie I wasn’t having leg weakness) and performed well in the various movement tests and was told that aside from having particularly strong leg reflexes I looked fine. She doesn’t want to do a second MRI even though it is over a year after the first one and I’ve had another episode of symptoms, and she also doesn’t want to give me anything to reduce the day to day symptoms because she is not worried about waiting to see what other symptoms develop. She also commented that it could be MS, but also that it might not be.

Has anyone else had this experience? I understand needing to be able to see me symptomatic to diagnose anything but I feel pretty abandoned, and like she really doesn’t want to help me. I’m going to talk to my GP again but I wanted to know if it is usual for neurologists to sit back and watch the show instead of actively testing for things. I’m in the run up to my exams and was really hoping to get some closure on some of this.

Thanks so much for reading all of this, I think I really needed to get it off my chest!

Georgie

2

Hi Georgie

what you’ve said about the neuro is pretty much how it is at the beginning of the long road to diagnosis. It’s very often a case of ‘wait & see’ if your condition progresses…

Your GP could perhaps help with any symptoms you may have, a chat with him/her could benefit you.

Try not to worry, easier said than done I know! Keep a diary/note of your symptoms as this might be helpful for future reference

Good luck

Rosina

1 Like
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Thanks Rosina, that is at least reassuring! I have been keeping a vague diary of my symptoms so will continue to do so, and hope that we can get some answers eventually.

All the best,

Georgie

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Hi all,

Since my last post I have been referred to the neurologist again and have an appointment on Wednesday (25th) because of tingling in my hands and some pretty heavy fatigue. I want to make sure I get the most out of this appointment so I was wondering what kind of questions you wish you had asked in the early stages of diagnosis. I’ve seen several posts from people who had multiple MRIs and would also like to know if it is a good idea to push for a second MRI.

Thanks very much,

Georgie