Diagnosed Recently

[Stonec10]

A week ago today I was diagnosed with MS after 6 months of consultations and tests. I kind of expected the out come as I had looked up some of my symtoms so wasn't much as a shock to me, however since having this confirmed I feel I have been experiencing a lot more symptoms like headaches, tiredness and aching. I didn't feel any of these before being diagnosed, I only ever had slight numb tingling

 

did this happen to anyone else, I think my anxiety is the main cause of this since I have been doing lots of reading on MS

[Stumbler]

Whether you're expecting the diagnosis or not, it still comes as one helluva shock.

 

So, now's the time to be kind to yourself and just take it easy. You just need to switch off for a bit, to let the dust settle.

 

Stress is a major antagoniser of MS. Your stress-ometer was probably going off the scale leading up to the diagnosis.

 

[Stonec10]

Yeah I am trying to switch off until my next appointment with the MS nurse as I am driving myself crazy over thinking and over Annalysing everything I’m feeling if it’s the MS or because I’ve had a heavy Easter weekend ect. I suppose it will all become the norm eventually

[Stumbler]

You do need to switch off. You're just not doing yourself any favours.

 

Here's a booklet, which is an introduction to MS. Have a brief scan through this, then pamper yourself. Do something nice, e,g, watch a Rom-Com, break out the wine and/or chocolate, etc.. And just be nice to yourself.

 

https://support.mstrust.org.uk/file/store-pdfs/Making-Sense-of-MS-Booklet-WEB.pdf

 

[Scully]

Hello and welcome to our little boards.

 

Still a shock, even if it’s expected. You were diagnosed fairly rapidly by comparison.

When I finally got my diagnosis after a year. I came home, unplugged the phones, shut down computers and mobiles,

Grabbed a duvet, and watched back to back films on TV.....

For 4 day’s, I spoke to no one.

It was just my way of the 'coming to terms' with it all.

I’d decided not to scare myself witless with other people’s MS...after my neurologist told me NEVER to compare yourself to anybody else, you are all different and so will your symptoms be....and he was right too.

I go to a local MS group for physio. Some are quite badly affected, some you would never guess they had anything wrong with them...

So, forget Dr. Google. Treat yourself to some 'me time'...do something you like doing...distraction works a treat !

Stick around, and ask as many questions as you want to but above all....be kind to yourself for as long as it takes.

Scully

 

 

 

[Stonec10]

yeah that was the first thing I wanted to do make sure I am looking after myself, I have given up smoking after 7 years I'm eating a lot healthier and exercising more. now I am starting to focus on the positives the symtoms don't seem as strong however the worst thing I am feeling is a constant throbbing headache. again not sure if this is linked to the MS or the fact I had a swollen throat and have given up smoking and coffee or stress. so many reasons!

 

I am finding this forum very helpful and its nice to hear there are many different routes people can take, all that was in the back of my head was I will not be able to walk this time next year - think its the not knowing that's the hardest and waiting for the appointment to start medication

[Nick]

Hi Stonec,

 

Just getting the diagnosis will give you fatigue, you probably don't recognise it as a symptom, feeling simply worn out. As the others have said, this is not a time to 'push' its a time to allow yourself some space and to take things easy. Keep asking the questions, where you are at is where we all were and we may be able to help.

 

Best from Nick

[Stonec10]

This is all so helpful thank you all! - this kind of support is keeping me calm and stopping me from over panicking and over worrying and just going along with it calmly.

 

Did anyone find the medication supressed the symptoms - I'm still waiting for my appointment but really want to start the medication to prevent any more attacks

[Stumbler]

There are two types of medication that we take, "relapse management", better known as a Disease Modifying Therapy ( DMT) and symptom management.

 

As their titles imply, a DMTs role is to limit the frequency and severity of future relapses. There are now some very effective DMTs available, which try and achieve "No Evidence of Disease Activity" ( NEDA), basically stopping MS In its tracks.

 

Symptom Management is exactly that, trying to minimise the impact of MS symptoms.

 

[Nick]

One of the difficulties of giving advice on treatments is that MS is a very wide ranging condition that affects people in many different ways and to varying degrees of severity. Learning more about your particular situation takes time and you need to have some confidence in both your neurologist and your MS nurse. These are the people best able to provide the right approach to treatment. As time goes by and you learn a lot more about your MS you will be able to tell what works and what does not.

My greatest surprise when first diagnosed was that the best help I had was not from medicines but from the support of others with MS. It is a frightening thing but not at all what you might expect.

Hope that helps

 

Nick

[Scully]

I can only agree with what the others have said.

I have the Primary Progressive type of MS, so the DMD's that stumbler mentions won’t work so aren’t suitable for me.

However there are drugs that can help with symptoms...

I get muscle spasms, so take baclofen to manage that.

Pain is just awful at times so there are drugs for that too.

Fatigue ....that awful feeling ( like I have now) or feeling completely washed out....ie. it’s just taken me almost 2 hours just to get washed and dressed !

People without MS just don’t understand in the main...if you mention fatigue, they usefully come back with 'oh I’m tired too'.....

As the others have said. Your MS nurse is your lifeline here. They know and understand everything and anything about MS...and, if they feel it’s necessary, they will contact your neurologist if needed. They explain the pros and cons of various medications...but most importantly they listen.

If your MS nurse hasn’t contacted you yet, keep at him/her. They are short in numbers and pretty busy..

Scully

[Nindancer]

Hi and welcome

I can confirm I cried daily for at least a week after that diagnosis - it took quite a time to fully understand and realise what my symptoms were, I did manage to ignore a lot of stuff. I think growing up as a migraine sufferer, there was always a certain fear of being considered a hypercondriac (sp?) so I managed to ignore quite a LOT!

 

Sonia x

[Stonec10]

Hi and welcome

I can confirm I cried daily for at least a week after that diagnosis - it took quite a time to fully understand and realise what my symptoms were, I did manage to ignore a lot of stuff. I think growing up as a migraine sufferer, there was always a certain fear of being considered a hypercondriac (sp?) so I managed to ignore quite a LOT!

 

Sonia x

 

 

Yeah I think now after three weeks ive finally calmed down and im not feeling as stressed about it all, I am still waiting for my letter to come through confirming my appointment to start medication. I dont believe I have had another attack since my second one in febuary, I have noticed if I have had a busy weekend mondays I tend to be more aching and get throbbing in one legm arm or breast bone but its not painful.

 

its hard to tell the difference between a symptom and my brain thinking am I getting worse.

[Nick]

Understanding MS is difficult. Stress is one of the big things to avoid, easy to say......very difficult to avoid. 'Spoon Theroy', see here http://ms-people.com/forum/index.php?app=core&module=attach&section=attach&attach_id=540

Its describing Lupus but is also very relevant to MS and is a good way to start to comprehend. MS can be so different for different people, but you can apply these technics for your own situation as you learn more about it.

 

Nick

Edited 16 Apr 2018, 9:21 pm by Nick

[Stonec10]

Understanding MS is difficult. Stress is one of the big things to avoid, easy to say......very difficult to avoid. 'Spoon Theroy', see here http://ms-people.com/forum/index.php?app=core&module=attach&section=attach&attach_id=540

Its describing Lupus but is also very relevant to MS and is a good way to start to comprehend. MS can be so different for different people, but you can apply these technics for your own situation as you learn more about it.

 

Nick

 

Thank you for sending this, it was a good read and I will defiantly use this for support methods. Last night I felt a slight tingling in my foot, I was trying to work out if that was a symptom ( as I have had it before ) or an attack - the stress levels have gone down with the support from my family but I cannot wait to have my appointment letter to confirm when I can speak to an MS nurse

[Nick]

Brilliant that you have family support, I'm in that lucky position and it can be a huge help. You learn as you go along and that applies to those closest to you as well. I've been diagnosed for over ten years now and initially the diagnosis affected me greatly. The process of accepting and understanding things took me a very long time, so don't be too hasty. The main thing is to try and keep 'balanced' after a while you will know what is MS and what is not. The body likes balance. Good eating, avoiding overindulgence in alcohol , etc etc. MS also likes exercise! Hard to believe I know but here agin its certainly not the case that you should try and push yourself (thinking you can overcome it) You just need to keep up with a steady lifestyle.

When I first had problems one of the initial symptoms was that I suddenly got pains around my ankle and could only walk a certain distance before fatigue overtook me. It felt like I needed to keep on and defeat the problem. Wrong thing to do!! At the time I was in a very stressful environment working very long hours, something I failed to realise was affecting me.

Also another bit of advice. MS is different for all of us, so don't think that the way I, or others are affected will be the same for you. That is not to say that many of the symptoms are the same, it's just that the degree to how you will be affected is unknown, particularly as you are only just diagnosed.

That is where you need to keep positive and keep doing stuff, just in a more careful way.

 

Nick

Edited 17 Apr 2018, 9:37 am by Nick

[Stonec10]

Brilliant that you have family support, I'm in that lucky position and it can be a huge help. You learn as you go along and that applies to those closest to you as well. I've been diagnosed for over ten years now and initially the diagnosis affected me greatly. The process of accepting and understanding things took me a very long time, so don't be too hasty. The main thing is to try and keep 'balanced' after a while you will know what is MS and what is not. The body likes balance. Good eating, avoiding overindulgence in alcohol , etc etc. MS also likes exercise! Hard to believe I know but here agin its certainly not the case that you should try and push yourself (thinking you can overcome it) You just need to keep up with a steady lifestyle.

When I first had problems one of the initial symptoms was that I suddenly got pains around my ankle and could only walk a certain distance before fatigue overtook me. It felt like I needed to keep on and defeat the problem. Wrong thing to do!! At the time I was in a very stressful environment working very long hours, something I failed to realise.

Also another bit of advice. MS is different for all of us, so don't think that the way I, or others are affected will be the same for you. That is not to say that many of the symptoms are the same, it's just that the degree to how you will be affected is unknown, particularly as you are only just diagnosed.

That is where you need to keep positive and keep doing stuff, just in a more careful way.

 

Nick

 

 

Thank you so much for your helpful advice, funny you say about the job, I have recently changed my job which is close to home and I can walk everyday.

since walking and changing my work environment I realised how much that stress effected me, I dont sit a google all the time now about MS I just come in and be positive and surround myself with positive people and atomosphere.

 

my worst weakness three weeks ago was googling and telling myself I had every symptom that was showing online. I recently found out my friend was diagnosed 5 years ago and I wouldnt of even known. its very helpful speaking to her and everyone on here as it helps to control my over thinking

[Nick]

You are very welcome, The forum here is very quiet just now, but there are a lot of very knowledgeable people here and Marina who set the whole thing up had in mind the very aspect of people with MS being able to communicate with each other and especially being able to help people who have just been diagnosed. (So I believe! hope that's right Marina)

Knowing somebody else like your friend with MS can be a really big help.

So take it steady and keep asking those questions

 

Nick

[Stonec10]

One question I did have was how long did people wait for there appointment with the MS nurse to sort medication. ( if they went for medication) my diagonostic was about 3 weeks ago and still have not received my appointment confirmation. And a part of me is living on edge incase I have another attack in the meantime

[Scully]

Hello.

 

As per my previous post above, if you have not been contacted by your MS Nurse, then call them!

They can be found by checking the MS Nurse in your area, via the local MS Society website.

Or, ask your GP surgery for the name and contact number.

MS nurses are extremely busy, and some have a vast area to cover, so make the call and explain you are anxious to see them

The MS Trust website gives you the option of entering your town to find your nearest MS Nurse here

https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

Location and phone numbers of your nearest one....if you call the wrong one, they will let you know who to call.

 

Scully

Edited 18 Apr 2018, 4:40 am by Scully

[Stonec10]

I have my appointment today with the MS nurse to go through any questions and medication. to say im nervous is an understatement as I had almost forgotten I had it.

I have always suffered from Migraines however I had one last night and I have never had it come on so quick and painful. did anyone else have migraines before diagnostic that then became worse?

[Marina]

Apparently, having migraines before diagnosis isn't unusual. I used to get a lot of migraines as a teenager, and at the time of getting a diagnosis, my GP asked me if I used to get migraines as a teenager, so I guess he knew this to a possible factor too.

 

Knowing whether a head pain is actually a migraine or another type of headache can be a bit tricky at times, especially for us with MS. For instance, what set me off on getting a diagnosis was a massive head pain, not a migraine as I knew it, where I'd get very sharp electric shock sort of pains on moving my head, and which became what I then called the "mother of all headaches", and it lasted at least 5 weeks.

 

Once diagnosed, I was then told I also have trigeminal neuralgia ( TN), but of the "atypical" kind, which is where it aches all day on one side, from my eye down through my cheek and jaw to my neck, as if I'd been in a world championship boxing match. "Normal" TN tends to be very painful short sharp shots. It's better these days in that it's milder when I get it, but I now can't quite tell the difference between it and what might be a migraine.

 

If you go to this section in our "Resources", there are several links related to TN and headaches: http://ms-people.com/forum/links/category/10-symptoms-and-diagnosis/

 

So, yes, I would definitely ask your MS nurse about it. If it should be TN, there are meds that might help.

[Scully]

Good luck with your appointment today! Glad you got it sorted out.

Don’t be nervous. These nurses are excellent.

May be an idea to jot down the things you would like to discuss, it’s so easy to forget to ask something.

And don’t worry about asking questions either....with MS there is no such thing as a 'dumb question'

Scully

 

[Stonec10]

The appointment went well and was really useful to talk to someone and hear my options again for medication. funny thing though is since the appointment I am feeling my tingling in food and headaches alot more. I am now taking Vitamin D and exercising everyday. I have finally quit smoking so hopefully all these will help my daily symptoms and feelings.

[Stonec10]

today I have woken up with a banging head ache and unfocused eyes, I have gone to work however paracetamol and ibuprofen just are not sorting it, any recommendations?