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Diagnosed about four years ago but feel lonely

After about two years of trips to the GP and hospital, I was told that I have demyelination which is the pre-stage to MS I was informed. The GP told me that looking at my MRI and Lumbar Puncture results I have MS.

Considering the definition of a relapse, I guess I have relapses regularly where the systems get worse. But I’m told that until another episode of demyelination, i will not be eligible to any treatment as it is considered an isolated incident. I was trying to join the Army Reserves and failed the medical as they do now allow anyone with MS to join and I was heart broken.

I struggled to get hold of the MS Nurse and feel completely alone. I now have extra sensations in my toes, extra pains in toes and shoulders, I am always sleepy and feel like my memory is worse. But i do not understand if that is MS or just me – from stress, poor health, etc. I would run a lot but my symptoms seem to get worse so i stopped because it was so uncomfortable.

I don’t know what a spasm is, but I do have twitches some nights which keep me awake.

Don’t know what I’m looking for, what is MS and what is not? How do i know if i have had more demyelination, even a minor one?

What do I do to stop, slow down or prevent more episodes?

Are the fatigue and nee sensations another episode or even part of MS?

I’m afraid I am unable to answer any of your questions.

But

what has helped me is exercise. I have been diagnosed with ms. Through the nero physio I started a class thing. It built my confidence that I could exercise without negative impact.

I have now joined a gym. I don’t do a lot, but a little cardiovascular, a little ‘strengthening’,

it feels good.

so what I’m saying is, maybe running isn’t ok for you anymore, but that doesn’t mean you have to give up all Exercise.

the phrase ‘use it or loss it’ , not sure where I heard that said but I have taken it to heart.

so sorry about the army, that must have made it all feel far too ‘real’.

sending big hugs

hi silver was it your GP who gave you the diagnosis? because it should have been a neurologist. you should have been given an ms nurse and the choice of a DMD. chase up the ms nurse, leave messages and really powfag them. you say that you are always sleepy = fatigue. your memory is worse = cog fog. these are very common symptoms of ms. pilates is the perfect exercise for ms because it strengthans the core. it is unusual to have the first four years without having any more appointments with the neuro. keep seeing your GP and ask if you could be re-referred to neuro. it is not right that you have been left to flounder like this. you may need another MRI as this is the only way to see if you have more demyelination. spasms can manifest as twitches or cramp like pain. try to find any local groups for people with ms. the local branch of the ms society is a good place to start. where i live there is a physio group who have hydrotherapy each wednesday and a gym session each monday. these are run by a small charitable organisation just within my postcode. hope this helps a little. carole x

Hello silverr

It does sound like you’ve been pretty much abandoned by the health professionals.

Carole is quite right, a GP is not the person to diagnose MS, it’s a neurologists job. Plus, whether you’ve been given incorrect information, or just not understood what you’ve been told, it seems like you’ve been left floundering with no idea of what is going on with your body.

Basically, demyelination is the process by which nerves are attacked by our own immune system. The immune cells attack the myelin which covers and is supposed to protect the nerves. When the myelin is attacked, it causes relapses, or symptoms of that demyelinating attack. What happens after the attack dissipates is that often lesions (aka scars), are left behind on the brain or spine which may or may not leave ongoing damage causing symptoms even after the relapse goes into remission.

Demyelination is not a primary stage of MS, it is part of MS. If you are experiencing relapses, then you don’t have a single episode of MS like activity (what is known as a Clinically Isolated Syndrome or CIS), you actually have MS. Which is what it sounds like you’ve been told by your GP. Without any further guidance.

The symptoms you describe sound all rather typical of MS, either you have a relapse which gives you new or repeated symptoms, or nerve damage from prior relapses which causes ongoing symptoms (things like fatigue, poor memory, pins and needles and/or spasms that are always with you).

I think you need to see a neurologist and see if you can be prescribed a disease modifying drug (DMD) to prevent further relapses. The neurologist may want to do another MRI, but either with or without a new MRI, should be able to confirm that you do in fact have MS, not a one off event. As Carole said, you might have to be re-referred to the neurologist, or you may not. It depends on whether you were discharged by the neurologist you saw initially.

As far as not being able to contact an MS nurse, that’s pretty terrible. I would expect that you’d have regular contact / appointments with an MS nurse. That nurse should be able to tell you all of this and maybe can get you an appointment with the neurologist if you’ve not been discharged. If you were to keep trying to contact the local MS nurse, you might find you can access more support from him/her.

Both Sarah and Carole are right in that exercise can help. Gentle exercise (at first, especially) can help with symptoms and your mood too. If you’ve not seen a physiotherapist, perhaps you could be referred by your MS nurse, neurologist or GP. And if there is a local branch of the MS society, they may be able to help with exercise sessions.

If you were to hit the Get Involved box at the head of this page, then scroll down to ‘Find Support Near Me’, you can type in your town or postcode and see what is going on in your local area, from exercise to social events. This could help with your loneliness.

Best of luck.

Sue

Hi there Silverr,

The other posts give great advice, as always. I can understand the reticence to offer you DMDs before the type of MS is known. Should it prove, via another MRI, you have Relapsing Remitting MS then DMD 's are offered. If it’s the rarer type, PPMS, then DMD’s cannot help.

Please see your GP for a direct referral to a specific Neurologist & M.S nurse. Find out their names, and their secretaries, then ring them repeatedly until you have an appointment with the specific Neurologist.

There’s no such thing as pre-stage M.S. A patient begins to notice “little things” that seem odd but not significant. When the “little things” become noticeable, we visit our GP. Eventually, we’re referred to a Neurologist who arranges an MRI plus other tests. On diagnosis, we have a Specialist MS Nurse allocated.

It appears you’ve been lost in the system. Your GP may think Neurology dept. is seeing you & ditto the Neuro may be waiting for your GP. Meanwhile, you’ve been left to deal with it all alone.

This happened to me in 2005, until 2011 when I was diagnosed! SIX YEARS waiting around thinking I was a hypochondriac!

To resolve this, please get onto all involved and demand communication between the various professionals & to copy you in.

Its wrong, but you have to chase up, chase up and chase up.

I wish you well Silverr, let us know how you get on.

Chrissie

Thank you for getting back to me and your much appreciated advice. After multiple trips to the GP, following a MRI and lumbar puncture I did see a neurologist. He was very kind and supportive when taking me through the findings. The neurologist said that it is a Clinically Isolated Syndrome. Thank you Sue for helping me clarify that :slight_smile: From my understanding, CIS was the pre-stage to MS. The locum GP, who again was very helpful, told me at a later date (after the diagnosis) that looking at my results from the MRI and lumbar puncture I do have MS. I was given contact details for the MS Nurse by the neurology team, then again by the GP after failing to get through and again through the web. I have rang the MS Nurse multiple times but I am never able to get through even after leaving multiple messages I don’t hear back. I spoke to my GP last week and he told me that I am the second MS patient to say that and told me to simply persevere. I have zero hours job, my wife works too and we have a beautiful three year old daughter. I feel like such a burden sometimes. We both have to work and look after the little one to make things work. There are days I wake up knowing that the world would be a better place without me. But then I get scared about the impact that would have on my loved ones. Seeing the GP does unfortunately mean taking time off work, but at this stage I am struggling to get through the day. This weekend has been semi-productive, I helped out with remembrance day events but failed to get on top of the house work. @Sarah, thank you for the hugs :slight_smile: I will try to get back to the gym. @Catwoman, thank you for helping me understand my symptoms. I have an old running friend who does pilates so will be chasing her up. @Sue, thank you for your time and sharing your expertise :slight_smile: It has been very helpful. @Chrissie, thanks for your advice. I will be chasing up the neurologist again and hopefully get a better understanding of what’s going on with me.

All I would suggest for the lack of availability together with patient neglect of not returning your calls, is to contact the Patient Liaison Service (PALS).

Do you have a named Neurologist Consultant, his Secretary details and a named M.S.Nurse? This is important to help you to generate a link, and the ability to chase them up. I’m afraid if you’re in the “one size fits all to see different Neuro’s & Nurses caseload” I fear they all pass the buck.

As for feeling a burden, it’s perfectly normal to feel it. You’re absolutely no burden to anyone, especially your family, particularly as you’re still able to work and a CIS could mean several years will pass before symptoms deteriorate.

Finally, I’d be tempted to tell my regular GP if a locum told me I definitely have MS, even after a Neurologist diagnosis. It’s irresponsible and the locum should have requested an appointment with as Neuro or MS Nurse.

Refuse to be ignored anymore and let PALS know.

Good luck

Chrissie

Hi All :slight_smile: I just wanted to give you all an update. Since my last post I have been calling every day, multiple times. I have been given alternative numbers to call mostly by voicemail messages and a couple by someone on the other side of the line. I have called a dozen different numbers in that time. I left three voice messages on a particular line, and I finally got a call back early yesterday. The lady said that the nurse is not available till March 2019 but she may be able to get me an earlier appointment with the nurse at the clinic. I was told that she is waiting for the nurse to get back to her and she will give me a call. My final voice message included that I have been trying in 2014 and again now as I have not had any luck getting through to anyone – so I guess this may have prompted them to reply? I got a call this morning and this time I was told that I need a new referral to see the nurse, and that I should go to A&E if I am struggling. I now have a telephone appointment with my GP on Thursday 22nd when I can request a referral. Fingers crossed, I can get some support soon after this referral.

I find all the medical info I need about my symptoms is on the MS Trust web site. The MS Nurses use it too.

https://www.mstrust.org.uk/about-ms/ms-symptoms

Also the doctors use NICE Multiple sclerosis in adults: management

https://www.nice.org.uk/guidance/cg186

Hope you improve soon.