angie82 02/05/18
Last reply 1 month ago
My diagnosis of MS.

Ms is very new to me. I visited my GP in October, after loosing sensation in my body from my coller bone down. I had various urgent referrals made for various tests. I had an mri in November 2017 and given the diagnosis of MS by a neurologist as the mri showed small lesions in brain and a large one in my spine. I was told at diagnosis that I’d be referred to the hospital Ms team, given steroids and dmds. I was given iv steroids in December to reduce the inflammation in my spine. I then had to wait until March to have a lumbar puncture to confirm the diagnosis. Dmds were not offered until they had my LP results back. I didn’t want the LP but was told that without it I wouldn’t meet the criteria for Dmds as its not considered a full diagnosis.
Im now at a stage finally to receive dmds but I’m now being told that I don’t meet the nice guidelines for many drugs as this is possibly my first attack…. Now I may be wrong but I thought that the sooner you received treatment the better? I am also sure that this is not my first attack. I briefly lost my sight when I was 21 whilst suffering extreme migraine. This passed over the course of around a week, but for around a year I would have weekly migraines and loose areas of sight.
My MS team have said that they will take this into consideration along with the tests for carpol tunnel to determine the bizarre sensations in my arms a few years ago… The GP receptionist told me my tests were normal so I did not need to see the GP…. I just assumed that the sensations must be normal so ignored them as bast as I could.
Its now may. My current attack happened on October 1st and I’m still not back to how I was before and I still have not received any dmds. Is it normal for treatment to be so delayed and how does my diagnosis journey compare to your diagnosis journey?

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stumbler
1 month ago

@angie82 , whose to say how the bureaucratic wheels of the NHS work?

You need to exert some control over this process and to influence the choice of DMD. So, chase up the MS team, make yourself a nuisance, but do this politely.

And, research all the available DMDs to see which you may prefer, and your reasons for this choice. The following will help your decision :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf

The present thinking on MS treatments is to hit the MS hard and fast with the most effective treatments. So, this and your clinical history, i.e. your recollection of previous related incidents, should provide the correct arguments.

As we often say, we have to be our own advocates to great the right treatment.

Good luck.


highlander
1 month ago

Hi Angie82, In answer to your question.
Almost the same as you with the exception of any mention of a treatment plan or much else.
Seen a speech therapist, who’s very helpful but nothing much else at the mo.
My gp has been very supportive and is chasing up other departments that I should be in contact with.
I wish you well and trust our journey through this melee of paper work and having to jump through hoops goes smoothly eventually.
Keep smiling!


angie82
1 month ago

Thank you both.
The Ms nurse finally returned my calls (and emails) yesterday and we have settled on copaxone. I’m very nervous about taking any kind of medication and I’m still very afraid of MS. I mean, I went to bed fine one night and woke up with a numb body. I worry (not every night) how I will wake up in the morning. On the flip side, every day I wake up and I’m okay, I’m extremely grateful and determined to enjoy my day. I’m off on holiday with my husband (our first child free holiday) and when we get back, I’ll be starting medication and dropping to 18 hrs a week of work. I feel like I’ll have a better balance between work, health and family.


cameron
1 month ago

Compared to all the worries you’ve been having, I think you’ll find that taking Copaxone is not difficult! xx


angie82
1 month ago

Cameron, thank you!


imbarca
1 month ago

angie82 it’s a lot to get your head around. Sounds like you’ve made some good decisions. It’s important not to get stressed (ha ha you say!). But it really isn’t good for the MS so do whatever you need to to help you with that. Gardening, drawing, meditation whatever. Have a lovely holiday.

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