Never thought I’d be writing here after lingering for months…just been referred by my GP to see a neurologist for suspected MS.
I’m 28, female, and symptoms began back in November with fatigue, pins and needles and just general body aches. Turns out my iron was low so thought happy days, take some tablets and that should help. My iron levels returned to normal mid January but I was still having pins and needles, my fingers started to feel stiff and sore (but no swelling), sharp back pain that wouldn’t shift, tingling sensation across my body, sporadic mild twitches as well as the feeling of what I can best describe as fizzy water feeling in my calves. GP had me in for every blood test under the sun but all came back normal. I thought I would just leave it for a while and my mid February pretty much every symptom had disappeared – still felt a bit tired but don’t we all.
Then towards the end of March I woke up one day and my whole left side was numb. Pins and needles, body aches, fatigue, fizzy water feeling, twitches – all were back. Went back to my GP who did some tests and said it was clear I had left sided weakness and my reflexes were also brisk. In her eyes, she was thinking MS. I was also thinking this but didn’t bring it up. She referred me on the NHS but with waiting times I have booked a private consultation for mid-June (first I could get!)
I had my head in the sand about it all and it feels so real now…I’m terrified of what it could be. I know it could be nothing but I’ve also convinced myself it’s MND due to the odd twitches I get lol. I just can’t shake the anxiety of it all but trying to remain calm!
This forum has been really helpful in seeing the range of peoples symptoms and I hope it will continue to provide a source of comfort while I figure out whatever this is
You symptoms seem pretty similar to mine with the pins/needles, left sided weakness, brisk reflexes etc.
I too started my journey with a private neurologist after I had a horrendous appointment with an NHS neurologist (I have since been informed he no longer practices in my district ).
My private neurologist and got the ball rolling with MRI scans etc.
MS treatment is locally funded so sadly I couldn’t switch to his NHS clinic for treatment so I am now back with my local NHS clinic and I have to say the neurologist and MS nurse have been amazing.
I too hope to find answers. For 7 years now I have experienced extreme fatigue and numbness/tingling on my left side of my body (face, arm, hand, leg) has been all day everyday. The doctors said it was just migraines when it first started happening. Two years ago I started experiencing vertigo, blurry vision in my left eye, weakness on my left side, muscle spasms in my legs, temperature intolerances and pain. The doctors are finally hearing me and I have round of testing coming up. After 7 years I need answers.
Thank you! I hope everything is going well for you. If you don’t mind me asking, how quickly did you get a diagnosis after going private? I’m aware there will be need for an MRI, lumbar puncture, EMG etc and that everyone’s situation is different…it’s the waiting in limbo that is starting to grind on me a bit and it’s only been 6 months haha
I agree the waiting and the limbo you we have to go through is not easy.
Well…I have 5 lesions on my brain, my spine etc is clear. They have said from my symptoms and the clear picture that this all started in November 2021, the neurologists have said that they believe I had my first relapse in November 2021 then more recently in July 2022 and February 2023.
I had my brain scan repeated in March and it did not show any changes, mistakenly they didn’t do my spine. The neurologists have told me that the scans need to show deterioration to access treatment or I need to have a lumbar puncture.
I have been put on the urgent list for a lumbar puncture and they are going to re do my spine MRI.
My neurologist has said he is 99.9% sure that it is RRMS but he needs to cross the t’s and dot the i’s.
I first saw my private neurologist in October 2022.
I know what you mean about seeing in the GP’s eyes that she thought it was MS - I thought the same 20+ years ago. As it happened, I was right and so was she, I could just as easily have been wrong, and so could you (just as you could be extra-wrong about even less appetising options). So please try not to torture yourself with grim guesses. I’m glad that you’ve shared on here some of your grimmest fears - it can help to lance the worry boil to just get the words out there. Look, we all do it and it’s human nature, but it really doesn’t help much, but it doesn’t help much telling you that either, does it? Alas.
It’s an often slow and wearing process, getting a dx when there’s strange neurological trouble, so it’s important to try to pace yourself emotionally for a long haul. I am glad that you have a private consultation in the diary. I am sorry that it isn’t sooner, but there it is. You’re on the road to finding out what ails, and that is an important step.
).