Last reply 11 months ago
I think I have MS

I have a lot of the symptoms that are on the MS NHS page. I’ve had extreme fatigue (which made me stop going to school in September 2017), I have leg pain, pins and needles in my side, difficulty swallowing, weak legs (I’m thinking about getting a wheelchair) and cognitive dysfunction (I have a few more symptoms but I think you get the gist).
In September I was diagnosed with an iron and vitamin d deficiency (gp said it was because I had a viral infection and it pulled everything down). I was messed about between two gps and I have stuck with the one who said that I have a fatigue based illness (the other said that it was just anxiety making me feel like this).
My gp referred me to a pediatrician and I managed to get a cancelled appointment instead of waiting 3 months. However, this is where it all goes downhill. The pediatrician told me that there was nothing wrong with me and has referred to counselling (I haven’t heard anything from the counselling team who I don’t need or the pediatrician as he discharged me).
I have been left completely on my own and I’m trying to fight for a diagnosis. My gp said that he thinks that I have chronic fatigue syndrome so I clung to that but my symptoms didn’t add up and upon a lot of research (what else have I got to do!) I strongly believe that it is MS.
My parents are trying to get me referred to a neurologist and because of my awful experience with the pediatrician I haven’t set foot in a doctors since.
I have some questions for everyone with MS.
How long does the neurologist first appointment usually take?
How did you get diagnosed?
What questions would they ask?
And if you use a wheelchair then how do you request a wheelchair (I’m scared that my gp will think I’m being over dramatic like my parents do)?

I’m so sorry that this was such a long post so thank you for reading it 🙂

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11 months ago

You need help. I got an appointment in less than a week
Diagnosis a month later. He tested my mobility and vision
Hope this helps.

11 months ago

Why do you think you need a wheelchair? Is it because you really can’t walk, or because you think if you have MS you will need one?
Maybe try a walking stick fist for balance issues if you have any.
I hope you get some answers soon x

11 months ago

mariehate thank you for that it’s really reassured me to ask for an appointment with a neurologist

hollylb10 I need a wheelchair because my legs hurt a lot and they are always weak so it makes walking really difficult.

Thanks for replying!!

11 months ago

Hello @reeceywimbles, this is a horrible experience for you. To be honest, there could be a range of explanations for your symptoms as there are so many crossovers with other conditions. The main thing people on Shift advise, is not to Google too much. It will end up being scary and lots of worse-case scenarios. It is clear though that you need a swift referral to a neurologist. Are you still missing school? If you are then maybe they can get get the educational welfare officer to make a case for an urgent referral. When you see a neurologist it’s likely you’ll have some specialist blood tests, an MRI and possibly some nerve conduct tests. If there is anything like inflammation showing up, other tests might be necessary. There are many things like chronic fatigue syndrome, as well as some of the things you are discovering on the Internet which it could be. But don’t torture yourself, because this will definitely have an effect on your wellbeing. Your parents are probably going to have to take the lead with badgering your GP for a referral. Sending you positive thoughts, please can you let us know how you get on? X

** Edited for spelling mistake – Admin (Stumbler) **

11 months ago

Hi @reeceywimbles and welcome. Although I’m sorry that you have found the need to join us at such a young age.

Anyway, I agree with all of the comments from @vixen above.

I’m just wondering whether there is anything going on in your life that may have caused this. Stressful situations can play havoc with our brain function. So, are there any problems presently in your life, e.g. bullying, boyfriend trouble, BFF trouble, exam worries, etc.?

11 months ago

Hi and sorry to hear about what you’re going through and I understand your desperate need to get to the bottom of all these symptoms (trust me, we’ve all been there) but the thing with MS is that there are so many conditions that are similar that it takes a long time to finally diagnose and its not that your Doctors are brushing you aside its that MS is something they never want to diagnose people with.
My symptoms started in December 2015 and I got diagnosed with a trapped nerve and a month later it still hadn’t healed. I then had numbness down my entire left side so I immediately went back to the Doctors and after some tests they just said more than likely the trapped nerve had travelled. I then started limping for unknown reasons and started to get bladder issues so once again I went back to the Doctors (keep in mind this is about April time) and I finally got put forward to a Neurologist.
My first Neurologist didn’t believe there was anything to be concerned with but wanted an MRI scan just to be certain and this most likely where you’ll need to start. If you’re sure if you have MS (and I hope to God you don’t) then you need to request an MRI scan from your Neurologist to see if there’s any lesions mainly on the brain or spine. I had to go through multiple MRI scans and a Lumber Puncture and see 2 different Neurologists before I finally got my diagnosis in November 2016 so it is a long journey and its not something that can be diagnosed overnight or on the internet.
I hope you get sorted soon. This isn’t a journey any of us want to go through but its better to know than to not know and please keep us updated with how you get on and we’ll be there for any questions you have.

11 months ago

Thanks everyone for replying.
My symptoms started about 2 years ago and they keep getting worse as time goes on. My parents have sent a letter to my gp so I’m hoping he will refer me to a neurologist.
I have a blood test coming up so I’ll request for them to test for other things since they said that that would happen with the pediatrician but he just discharged me.
The main reason why I think it’s MS is the weird tingling I get (at first I thought it was a stroke but it’s obviously not now) and my gp said that it would be a fatigue based chronic illness (he’s seen it with other patients).
Thank you all for responding I’m gonna fight for a diagnosis of some sort.

11 months ago

Good luck with your fight and I’m really hoping for you that the diagnosis comes soon and that is is something other than ms than can be treated easier for you. The key to diagnosis is MRI scan and then my diagnosis was backed up by results of a lumber puncture. Insist on an MRI if you can get this referral, make take a few weeks but it will answer your question!
All the best!

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