Last reply 1 year ago
Newbie

Hi everyone, i am new to this site, so please bear with me.

I was diagnosed on 5th October 2017 with Primary Progressive MS. Unfortunately the neurologist who gave me the news, made me feel like my life had ended. He was so negative and said there is nothing they can do for it. I am awaiting results on a further MRI scan for neck and back, which hopefully I will get in time for next week when I see a MS neurologist, which i am having to pay for, as the NHS had left me until mid Jan next year before I would be seen.

I feel like when I look on some sites or the internet, it is more doom and gloom. Has anyone any positives to come out of this terrible condition please?

My legs are affected so I am unable to train at the gym, something I have done all my adult life. Has anyone else been able to get back to being active?

Thank you for taking the time to read my post 😃

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edmontonalberta
1 year ago

@crystal-2017

I might be the person to help since I was diagnosed with PPMS in January & have done lots of research.

The challenge of answering is two-fold. First, your profile shares nothing; age, relationship status, work history, your location, etc… If you are uncomfortable about posting this information, we can chat in private. I sent you a friend request – shift.ms friends have a private conversation option.

Second, I am heading out the door in a minute to go visit my Dad. I will be back in about four hours.

Gord


stumbler
1 year ago

Hi @crystal-2017 and welcome.

We don’t do doom and gloom on this forum. Well, we try not to as we find that a positive mental attitude is a good basis to move forward. And, we need those endorphins.

We also advise to avoid Dr. Google, for the reasons you mentioned.

You’re wise to see someone privately. This is a far quicker option, if finances permit. It will be interesting to see if this further scan confirms your Primary Progressive (PPMS) diagnosis or not.

Otherwise, you need to live healthily, eat healthily and, do your best to, avoid stress. Exercise is important. Whilst you may not be able to have the workouts that you used to, some gentle exercise in moderation is good. Or even try swimming.


crystal-2017
1 year ago

Hi, that is great to know 😃.

It is a one-off appointment to get the ball rolling as feel like I am in limbo at the moment. The head scan revealed the MS, this second one is to see why i have pain in my neck everyday.

I have done a little walk earlier but struggled with the cold temperatures. I cannot swim unfortunately due to my neck problems. I have a healthy lifestyle, just miss being active as i trained few times every week and now i struggle walking far. I do agee stress makes it worse but unfortunately work and life make this hard to avoid.


stumbler
1 year ago

@crystal-2017 , you need to see if you can get a referral to a Neuro-physio, to assess the problems with your neck.

These problems with your neck may be all tied up with stress. We do tend to hunch our shoulders when we’re stressed. This potential “knotting” needs to be freed up. This would then allow other possibilities.

Managing stress is so important with MS. Yes, I agree work and life are major causes of stress. We just have to ask ourselves whether the underlying issue is worth risking our continued health…………

There’s a webinar on managing stress in MS here, which may be of some use :-

http://eventcenter.commpartners.com/se/Meetings/Playback.aspx?meeting.id=718605


edmontonalberta
1 year ago

@crystal-2017

I have always had heat retention problems; I wore long johns every day this year except for two. No big deal; although not sure if this is MS related or not…

Regarding your MRI, I was on a three month appointment. Someone suggested I call & ask to be on the cancellation list. I did & had my MRI within two weeks. Not sure if you have this option where you live but something to consider…


celan2go
1 year ago

Hello Crystal I’sorry about your situation being in limbo after a diagnosis would,be hard. But you’ve come to the right place for suppport. I’m a relative newcomer to this site, everyome has been wonderful. Hopefully your next neurologist won’t be such a jerk. There are a lot of great people who are extremely aring and supportive and have a lot to share of their own experiences as well as research they’ve done. These are amazing people here. Hopefully, this site will be a ray of hope, in the darkness.


crystal-2017
1 year ago

Thank you all for your kind words and positive comment. For the first time since my diagnosis, I dont feel alone and like I am the only person this is happening to. I am glad that I have joined and hope it will help me come to terms with this horrible condition and help me to keep positive.


cameron
1 year ago

And I suppose your wonderful neuro didn’t see fit to mention that it’s progressive MS where the major research effort is now. The first drugs are emerging and there’s every likelihood that the pace of development will quicken. Having any kind of MS is horrible, of course, but a diagnosis in 2017 is a different proposition from even ten years ago. The emphasis for all types of MS is self-management with input from a ‘multi-factorial team’, to use the jargon. It has to be said, though, that some of these teams are better than others, at least judging by the experiences of people posting on shift. I’m wondering if the members of your team (the nurses, physios and other therapists) share your neuro’s negativity. If they do, you’ll want to go elsewhere, because the right support for the many facets of this condition is essential. If you’re in the UK, you do have the right to be seen anywhere. Let us know how you get on. Big hugs, x


crystal-2017
1 year ago

Hi, no he gave me no hope at all! I see MS neurologist next week which I have had to push for, so have yet to have a team to help me. No nurse, physio etc. He said with mine there is nothing so you can understand how I am feeling about it. I joined MS Society on Facebook and that has been a bit of a negative site hence why trying this instead. It is good to know they are looking into it now.
Yes I am in the UK.
Thank you 😃 x


chezy17
1 year ago

Hey Crystal.

Sorry to hear that your neurologist was so negative and not supportive. I found at the beginning of my diagnosis of MS I was pretty much in limbo and I was passed from pillar to post. I’ve actually got a good gp that has an interest in MS and is supportive so I go to him when I need to. Maybe you could go to your gp and he can liase with your Neurologist and MS team?

The mssociety, I found was very negative also but I think it’s down to alot of members being the older generation before medication and help you get now. I went on there looking for advice when I first got diagnosed and because I’m very upbeat and positive about my MS, which I still am, I got my head bitten off as if to say you can’t be like that.

Keep positive and active and talk to family and friends as much as you can, helped me deal with it alot better :-).

X


kelics
1 year ago

Hi welcome. I started to have symptoms early 20s, took 2 years for them to refer me to a neutoligist then another 2 to get a diagnosis. Im same like you, have weak legs but the upper body is still very strong. Im not sure if anything can be done about the legs, but you can always try to improve your general wellbeing by eating healthy, plenty fruits and veg, reduce on junk food, exercise wisely. Also read about taking high dosage of vitamin d3


dlg57
1 year ago

Hi Crystal, I am new to this too. Diagnosed 2 months ago after a ton of tests. I’ve seen a few neurologists and find most to be jerks. Must be they don’t see us as people, just a brain. But I found a good one who actually has a decent personality. He is honest and admits it is all a “crap shoot” trying to find the right meds. I have not had a replapse since symtoms began about a year ago, only have gotten worse. My Neuro hasn’t decided what “kind” of MS I have yet, still doing more tests. Glad I found this positive site. However, you all seem a lot younger than me. I am 60 and stopped working because I can’t do my job (accountant) any more.


crystal-2017
1 year ago

Hiya glad you have found a decent one now ans sorry you had to give up work.
I had a private apt with ms neurologist yesterday and he was loads better, very thorough, nice and also positive. He is going to try me on 5 day course of some meds and get ball rolling for nurse etc. Although he did say that he not sure which I have either! He wants to do more tests although I believe by research that mine is what i was diagnosed with. I must admit feel a bit disappointed as now its up in the air and I would rather know so I can get my head round it.
I think this site has a variety of ages and it doesn’t matter what the age, we are all here for each other regardless

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