Last reply 6 months ago
Not yet diagnosed

Hi i feel a little silly writing on here since I don’t have a definite diagnosis but I wanted to ask for some advice or other people’s experiences. I have been having some symptoms since July 18 itching on face, burning scalp in patches, burning on sole of my foot, tingling fingers, muscle spasms, eye pain(but no optic neuritis),weakness in my shin and numbness in the same shin, spasticity of my right leg and sometimes regular headaches. These symptoms all seemed to tail off before Christmas.. sometimes they come and go but not to the intensity as before. My GP refered me an urgent referral to neurology after being back and forth to my own gp. Last week I seen a Neuro and she said it’s more than likely that I have some sort of inflammation. She explained that my gp had been very thorough with bloods and other testing so she would send me for an mri, lumbar puncture and evoked potentials. She then asked me what I knew about MS and started to explain some of the advances in medicine and that it isn’t the debilitating disease it once was…. however I am terrified now that I have it. Can she been pretty certain about this without tests? To me she seemed to think it was a definite but without saying that. Sorry for the long post x

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mlgilber1
6 months ago

Welcome! She probably just wants to be thorough and diagnose it if it is MS or rule it out since these symptoms could be many things. Many things mimic MS and there’s no definitive test so they use all of the above to diagnose it. I was just recently diagnosed this past summer, had a relapse a month later, and told mine was aggressive whatever that means. I have experienced all of the above symptoms. The scalp thing for me is one of the worst and at times the tingles. My legs had been tingly for over a year and I started to get them everywhere, but thankfully they went away after my dmt infusion, but they’re coming back because I’m due for my infusion in a month and it’s wearing off fast. I wish you luck. Please try not to stress because if it is MS stress could make things worse, even if it’s something else stress is never good. Please keep us updated!


stumbler
6 months ago

@rachiep , it is her initial thoughts that your symptoms are representative of MS. But, she can’t give a formal diagnosis until she gets the results of her tests.

She is probably just “sewing the seeds” so that if she does give a formal diagnosis at your next visit, then it doesn’t come as a complete shock.

Here’s a flyer about MS, which will hopefully calm you down a bit :-

https://support.mstrust.org.uk/file/store-pdfs/About-MS-WEB.pdf

MS is no longer the condition that it used to be. There are now medications to manage, and even halt the condition’s progress.


Anonymous
6 months ago

Thank you @stumbler and @mlgibler1 for your replies I really appreciate the advice. @mlgibler1 it sounds like you have had a lot of the symptoms I have been having. I have also had two UTIs since Christmas and one which turned into a kidney infection and I was in hospital I think all these along with my initial symptoms do add up so I can understand where she is coming from. @stumbler I completely agree I have kind of resigned myself to the fact that I do have it as I got a lot of the criteria so to speak. I will defintely try and manage my stress x


Anonymous
6 months ago

Sorry @mlgilber1 my autocorrect 🙄


grandma
6 months ago

Hi @rachiep and possibly? welcome to our exclusive club. You’ve heard all the best advice from Stumbler and miligilber, don’t stress, don’t panic, if it does turn out to be ms you’re in good hands both with your neuro and us.

They have to do the MRI and Lumbar Puncture and all the other tests before they can confirm anything. There is a ‘set list’ that they have to tick off before they can go any further, annoying, time consuming but very necessary. A lot of people on Shift know exactly what you’re going through, we all genuinely sympathise and know how you feel. This will come to an end, eventually, we’ll be here and waiting to help, offer advice, listen to moans, questions, rants, whatever floats your boat👂


Anonymous
6 months ago

Thank you so much @grandma I’m very glad I found this site it’s such a relief to talk to people who are going/ have been through the same thing!


ash33
6 months ago

I continuously thought my symptoms could be thought away by like it being a pinched nerve. having eye issues I hear is one of the first signs. I was very lucky to be diagnosed pretty fast. I only started having symptoms that I can remember in May 2018. I was also checked for about three other conditions that mimicked the symptoms of MS. (I had so much blood taken it was not funny last year and I am now signed up for more sigh.) they were able to tell from my two MRI’s that Ms was what was going on. the MRI is helpful because there are more places they can see the break down of the myelin better. my first MRI was on my neck and there was inflammation there and some degeneration. but to be 100% sure they scheduled another on my brain with a special ink (gladuium or something) and they were able to determine the lesions. I am glad you are taking your health seriously!
hey I’m always here to chat if you need someone look me up!!


deirdre_woods
6 months ago

@rachiep…I was diagnosed over the phone in the er before even being tested. I was given a spinal tap that was negative. I was then given an MRI of my brain…and followed up with a MRI of my spine which confirmed it was MS… don’t be afraid…I know it’s easier said…I’ve had MS(unofficially)since jr high…first thing I experienced was fainting. I’m 40…I just experienced burning on my face a few days ago. Optic neuritis last year… I can still function for the most part…I just cant run…nor wear heels anymore…the floor likes to hug me a lot…you will be fine. It might not be MS…best wishes


Anonymous
6 months ago

@ash33, @deirdre_woods Thank you for your comments 😊 I have had people telling me it might be anxiety but I have had anxiety and post natal depression in the past and I spoke to my psych about this and he said 100% does not sound like typical anxiety symptoms. When I think back at least 6 years ago I had what my GP said was a trapped nerve in my back…. but it was a burning sensation that would come and go and I thought my bra was too tight. So possibly been going on for longer than I thought!


ash33
6 months ago

Yeah I started to think differently when it began to move up my other arm…

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