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Anyone know what I should do next?

Hi everyone! Hope you’ve all been enjoying the sun! I’m hoping someone will be able to help me, because I really don’t know what to do next! I was told back in May that I have MS after serval lesions were found in my brain and cervical spine, and then I tested positive with the lumberpuncher. The thing is, the neurologist who diagnosed me wasn’t sure which type I had! He said because of my age (30) I should have relapsing remitting, however, he thought I was taking a more “progressive path” so he refered me to a MS specialist at a different hospital. I’ve had no treatment apart from Baclofen! I’m still off work, (since Febuary!) which is killing me, and I know I’m getting worse. I’m starting to panic that because I haven’t had any medication, the problems I have will become permanent. I’ve told my MS nurse that I’m getting more problems, but nothing seems to be happening. I haven’t seen my GP as you can’t get an appointment for love nor money. Anyone know what I should be doing? Or am I panicking for no reason?

Hi Nadine,

Have you got an appointment through for the specialist at the other hospital? As hard as it is to see your GP i would try, there maybe other meds they can give you to help with your symptoms. I don’t think your problems will become permanat through lack of medicines. If by meds you mean dmd’s(?) then they don’t really fix the problems, just prevent further ones from happening so often.

I would suggest speaking to your nurse again too, ask for some physio if you think it could help you? Tell her about your fears - they may be able to put your mind at ease. Keep chasing your appt with the specialist, it’s not fair to keep you in limbo after a diagnosis.

Hope you get some answers soon - let us know?

Laura x

Haven’t got an appointment yet with the specialist. I’ve been discharged from physio about a month ago. She said that I was positive enough to do everything by myself. I bought myself an exercise bike, and I’m doing all the exercises she gave me to do, but I’m not getting anywhere! I’m not really sure about any of the treatment if I’m honest! I was just hoping a doctor would give me something to help. I was given a short course of steriods when I was first diagnosed, which were amazing, but they only lasted a few days. I know that there are drugs which can prevent things happening, but I’m worried that the longer I’m not taking them, the worse I’m going to be?! I work in a call centre, and my right hand is getting worse no matter what I try. Also my speach is some times affected. Even though my work have been really supportive, I would be heartbroken if I couldn’t go back. I just feel that the clock is ticking, and I’m stuck! Would a GP help? I was under the impression that a GP wouldn’t be able to do anything!

The GP might be able to chase up your appointment for you, if not ring the neuro’s secretary, ask when your appointment is and tell them you will take any cancelations they have (if you can?) Try explaining that your waiting on the appt to inform work about your leave etc…Your GP should be able to pescribe drugs to treat the symptoms of ms, however they cannot perscribe disease modifying drugs (dmd’s) only a qualified neuro can do that - Something the specialist will be able to do for you if you meet the Mcdonald criteria, once you get your appointment. Keep pestering them :slight_smile:

Hi, Laura seems to have covered it, keep pushing.

I’ll try and get an appointment with my GP. I just thought once your diagnosed, you’d get treated! I know there isn’t a cure, but I don’t really think I’d be able to cope if I kept getting worse like I am! To be honest I don’t know that much about MS. I buried my head in the sand since being diagnosed. Now I realise I’ve had it a super long time on and off, but I know I’ve been really bad constantly for literally a year now, and after what little knowledge I have of MS it’s hard to accept that this might be as good as I get. I am kinda pinning everything on some kind of treatment to help me. I had a conversation with my physio, who said even after they find out what type of MS I have, it could take months to get the approval for the expensive drugs! Is that right? I need to get my life back on track! I’m so fed up!

Hi Nadine, I think the clue to me is when you said you’d realised that you’d had ms for a long time on and off, which would be consistent with relapsing remmitting ms and then you say that you,ve now been bad constantly for a year which sounds like you’ve gone to secondary progressive ms. I can’t see that your age has anything to do with it. I’m not sure if they would now prescribe dmd’s for secondary progressive unless they think Tysabri may help but you can certainly get medications prescribed to make any symptoms you’re having more comfortable. Your ms nurse should be able to arrange any meds after talking to a neuro. Then they would usually fax or email your gp with what meds he/she should make available to you. You must chase up your ms nurse as they can be the vital area of communication between your neuro and your gp. You shouldn’t have to suffer unecessarily if you are in in pain/discomfort. Like a previous person said, it’s not fair to leave you in limbo after a diagnosis. They must follow this up.

Hi Nadine, I think the clue to me is when you said you’d realised that you’d had ms for a long time on and off, which would be consistent with relapsing remmitting ms and then you say that you,ve now been bad constantly for a year which sounds like you’ve gone to secondary progressive ms. I can’t see that your age has anything to do with it. I’m not sure if they would now prescribe dmd’s for secondary progressive unless they think Tysabri may help but you can certainly get medications prescribed to make any symptoms you’re having more comfortable. Your ms nurse should be able to arrange any meds after talking to a neuro. Then they would usually fax or email your gp with what meds he/she should make available to you. You must chase up your ms nurse as they can be the vital area of communication between your neuro and your gp. You shouldn’t have to suffer unecessarily if you are in in pain/discomfort. Like a previous person said, it’s not fair to leave you in limbo after a diagnosis. They must follow this up.

As I never really heard of MS before being diagnosed, I didn’t have a clue to what any symptoms were! I only went to the doctors when I thought I had a ‘bad back’ and started to drag my leg constantly, and my right hand wouldn’t work. But knowing a bit more about the symptoms, I realise I’ve had this for years! (I have so many symptoms I won’t have enough hours in the day to name!) Looking back I really could kick myself for being so stupid and ignoring things! I would make excuses for everything! Like a few christmases ago, I was writting christmas cards, and my hand stopped working… I just thought it was because I was tired…or on many occasions when I couldn’t walk properly, I put it down to a bad back, or when I slurred words, I laughed it off and had an early night etc. It was only until I took the steroids and felt better, I understood how sick I actually am. It’s ridiculous that I’m in this situation! I am trying to prepare myself for them to say it’s progressive, as it has been constantly getting worse for a year. I am a bit floored to learn that if this was the case, then there wouldn’t be much in the way of treatment. I will try to see my GP asap. But I am finding this all a bit overwhelming! To be diagnosed with MS is horrific, but to expect it to be progressive…at 30… words fail!

Hi Nadine, What a horrible situation! Don’t be too hard on yourself for missing it earlier. The Drs might well have not found any clear signs. I ignored, e.g. slurring and loss of co-ordination thinking I was “just tired” too.

I have an appointment about one year on after talking to my MS nurse and GP because of fatigue and walking/balance getting worse (the neuro that DX me didn’t think there was a need to see me again).

MS is very hard to adjust to, especially in a situation like yours. Keep pestering them.