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Newbie hoping for support

Hi all, how is everyone? There are two points to my post one is to try and get some information and secondly to hopefully meet some people who can relate. I have an MRI booked for next Tuesday, this was ordered on the second of February by the neurologist. I have had various “odd” symptoms for as long as I can remember but at the beginning of last year noticed something new and that was the loss of some fine motor skills. Not ideal with two little ones in uniform, makes cardigan buttons a pain in the ass. Anyway for a few of my symptoms I’d been to the doctor at varying times for individual things but never connected them. When this happened at the start of last year I decided to start looking into all my symptoms and see what if anything turned up, and repeatedly the answer was MS. I didn’t manage to get to my doctor until late last year and explained I thought I had MS and went through all the symptoms, he then referred me to a neurologist. The neurologist at the end of my consultation said I won’t lie its probably MS. So I’m currently waiting to have the mri scan done and see what it shows if anything, it’s a strange feeling waiting around for a confirmation. I believe I have MS because it’s the only things that covers all my symptoms but only time will tell. I feel down and out some days because whatever is wrong is limiting me right now and it sucks. Not being able to be myself fully and being so damn tired by the time my other half gets home that I just want to sleep is not fun. I’ve given up smoking to try and help, I’ve changed my first slightly to try and help combat the fatigue I feel. But right now I feel a little alone.

The neuro is an idiot for saying maybe ms without even an MRI as it is so hard to Dx and also very rare. wait till you’ve at least had an MRI done as it could be loads of other things as well. There’s no need to worry people like that and if they do they should be passing out info so people know about MS instead of just chucking them to the wind with a silly Dx…hope all goes well for you at your appointment…Terry

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Hi Terry, thanks for your comment. Given the number of symptoms I have and what they are ita highly likely to be MS, my health isn’t something I take likely and a year of research shows it to be the most likely candidate. I can only assume he didn’t give me any sort information as once he’d double checked all my symptoms as per my doctors report and done his extra tests at the time he asked why I’d asked for the referral so I told him straight. Given the symptoms I suffer from I think I have MS, which would show to a certain extent that he doesn’t really need to give me some nhs printout or leaflet that wouldn’t really brogans use. He explained that if he got the mri report back and it confirmed ms he would refer me to the specialist team at my local hospital. Which is actually a community team including physiotherapist and specialist nurses etc that come to you. As I said in my post really I think I’m waiting for confirmation as opposed to a diagnosis. I’m sure all will be fine I’m just hoping the results come back quiclly :slight_smile: Nat

Hi MummyRichards and welcome to the forum. Can I ask if you’ve had any blood tests? I know there is no blood test for MS, but as part of the investigations the neuros usually ask for a large number of blood tests in order to rule out literally dozens of mimicking conditions; there are just so many things, many very rare, that can present with similar symptoms. They all have to be ruled out before a diagnosis of MS can be issued. There are one or two other tests that are sometime carried out e.g. EVP - Evoked Potential Response testing and LP - Lumbar Puncture, but not everyone seems to need those.

Meanwhile, try to pe patient (frustrating, I know, you just want answers) as the whole process does usually take some time. Wait and see what the MRI reveals and take it from there. One step at a time.

Ben

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Hi Ben thanks for the message. I did have a large number of blood tests carried out at my GPS request (he’s very good at his job ) I know there were a few auto immune checks in there as well as thyroid, kidney, liver etc. All the bloods came back clear / normal whatever the appropriate term is there. From what he said he is waiting the results of my mri. If it confirms MS I’ll be referred to the specialist team at my hospital otherwise I will see him again in four months at which point I guess there will be more tests discussed. Nat

hi nat

tis a worrying time being stuck in limbo.

if you DO get a diagnosis of MS you will be/ought to be offered a disease modifying drug.

perhaps you could use this time in researching what is available re DMDs.

also ask your gp to check your vitamin D levels as this is often lacking in people with ms.

be strong, maintain a sense of humour (essential when fumbling with things like buttons makes you want to cry) the kids will appreciate having a good chuckle with mummy.

carole x

Hi Nat, can I ask you when you post could you break up into sentences i really struggle to read block text and kept missing some of the conversation, sorry to ask but it is hard for me and I know it is an actually symptom of MS as I know lots of people with MS who cant read block text for some reason, not sure why lol. xx

Google will always end up pointing to MS. I have had classic symptoms for 16 years even with positive test results. Getting a diagnosis is not that simple sadly. There are criteria that have to be met, dissemination in time and space and loads of other things.

Your symptoms yes could sadly be MS, but they can be lots of other things too. There are many MS mimics. I dont want you to go to see your neurologist convinced its MS, as it will be such a let down for you.

To have MS you need to be having relapses and recoveries. I have had MRI with positive lesions, still not diagnosed although i have been told it is definitely an inflammatory disorder.

There are a lot of people on these groups who are convinced they have MS, and want the results to come back quickly but sadly are still waiting years along the line.

My friend it took 20 years to get a final diagnosis, and I have been waiting 16 years, even with lots of positive results, so i dont want you to be disappointed if the doctor puts you through many other tests.

Lets hope you will end up an exception for a change. x

xxx

Hi Nat, I went through a long time with tests and examinations. My symptoms were very PPMS like, yet no test ever proved it.

I thought it was PPMS, several neuros thought it was MS.

I was wrongly dx`d with it.

Then a different neuro (I sw 16 of `em) decided it wasnt MS afterall, but something with similar symptoms, but a different cause and progression, called HSP.

luvPolx