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Utterly fed up with lack of options and don't know where to turn

Hi,

I’m just feeling really low at the moment, and can’t see things getting any better any time soon. I was newly diagnosised in March-June (initial in March, confirmed in June) time following a case of ON and then confirmed with an MRI scan (plus had had some brain inflammation on a previous MRI a couple of years back). My neuro that I’m under when I saw him in June basically said not to worry, that it would probably only be mild (given my age, sex, lack of symptoms over the past 2 years, and then starting with the ON), although I was a little more conserned and did ask about dmds (I’d had some vertigo not long before I saw him, and the previous year had had a very brief episode of double vision, but he didn’t read anything into either of these incidents). He send that I didn’t need referal to an MS nurse to discuss them (or anything else for that matter) and that’s where things were left. Only a week or so later, I started on placement (student nurse), and about a week into that I started with light-headedness, and numbness in my right leg. This past after about a week or two, but was very scary at the time. I did go to the GP about it but got the go old ‘well what would you like me to do about it’ - helpful. Then about 3 weeks after this, I started with double vision, fatigue (I’d had a very brief episode of fatigue just before the light-headedness started), severe nausea, and really horrible headaches (brain stem inflammation I’m told). I’ve basically been living off Co-codamol (which I have for problems with my back) just to get me through my placement, but I’ve still been feeling absolutely dreadful to the point of tears many days.

I went back to the GP (a different one this time), who referred me back to the neuro. I saw him in my last week of placement (useful), and he basically said that yes now he thought that it was a good idea to refer me to the MS team and look at dmds (which it turns out he doesn’t have a clue about as it’s not his sub-specialist, so really can’t help). So I now have to wait under at least Nov-Dec time to even see a neuro who knows anything about MS, and only after that can I have contact with an MS nurse who may be able to help me with symptom management and pain relieve (great - thanks a bunch! And in the mean time I’m supposed to do what exactly?). He gave me some anti-nausea tabs, and wrote a script for some Steriods, though told me to wait another week before cashing it in as he was sure the relapse would have probably resolved by then (plus Steriods work better at the start of a relapse apparently rather than further in - what a shame no one was prepared to give me some sooner). As you may be able to guess, I’ve now had to get the Steriods, which don’t appear to be having much of an impact on things (5 day course - 3 days in, of Medrone, 100mg * 5 per day?).

I asked his about anything for the fatigue and general tiredness I’ve been getting which seems to be getting progressively worse, and it was basically ‘sleep, take the day off’. What a happy bubble he lives in. I can’t get the uni to make any accommodations, and they certainly won’t let me just take days out of placement as and when. When I last spoke to my tutor, and tentively mentioned that things weren’t to great with me at the moment, she simply said ‘what about taking a year out, come back when your health is sorted’ (hmmm…, like MS will magically get better or go away) - like she just wanted to get rid of me / the problem, and I hadn’t even gone into what was wrong. They are extremely unsupportive, and really don’t like problems or having to make accommodations - they like the easy life.

In terms of home life, well it isn’t even possible for me to take time out. Until now, it’s been me providing support and help for my dad, who struggles to look after himself due to his mental health problems. He is not a well educationed man, has very big problems (due to his severe depression) with taking on responsibility including just for himself let alone anyone else, and spends most of his time just burying his head in the sand shutting things out (normally can be found on his laptop on FB). He also lost his wife (my mum) just over 2 years ago, and hasn’t even begun to move on from it. He lives in the South (as do I) at present, but has been clinging on to moving back up North closer to his family (his sister in particular) ever since my mum died. His house is in such a state (and I’ve neither been around nor looking back had the energy to help him sort it, certainly over the past year), that nearly nothings been done. However, oddly enough, as soon as I’ve had this diagnosis, he’s asked his sister and broher in law to come down and help him get it sorted so that he can move. It should be sorted within the next month or so, and he should have a place I would or thought by Christmas (he already has people interested in his place).

My work options where he’d be going are nearly none existant (Blackpool - one of the highest unemployment rates in the country), and he’s made it very plain that if I move in with him I have to pay him full board so will need full time work. He doesn’t seem to have any consept that this may not be possible for me, or at least not all the time, which will make finding a job really very difficult especially in somewhere like Blackpool. He’s also said that he thinks a lot of it is just in my head, that he can’t be responsible for me and I need to just get my own place and get carers in (I’m not even at that stage, but I may not be able to maintain my course at the moment, and if I can’t do that then I certainly won’t be able to maintain a full time job), that he needs to build himself a new life, and that he doesn’t understand MS (not that he’s shown any signs of wanting to - I’ve tried explaining it as best I can, and pointing him to sources of info, but he doesn’t look because that would mean facing things).

I have a sister, but she too has washed her hands of the situation - says it’s my dad’s department if things get that bad as he’s my parent. She does seem to be a little more aware of how bad things could get (and I am basing things perhaps a little on a slightly more worse case scenerio since things haven’t gotten off to a great start nor do they seem to be improving), but doesn’t seem to have any options in regards to what practical help may be able to be offered if needed. I can understand her a little more since her family struggles to put food on the tablet most weeks, lives in a 2 bed house (she has a daughter), and both her and her partner work full time, so I don’t know how they could help in a practical sense either.

I am in agreement with my dad in that I don’t want to live with him - I don’t see it as being a viable solution for either of us. We’ve had quite enough years of horrible arguements and falling out for me to know that this would not be good. But I’m lost for alternatives (I may be looking a bit down the road, but equally, I couldn’t do another placement like the one I just did so perhaps not, and I think that I’ll have less support on this placement).

I’ve tried to get in contact with my local MS branch,but have heard nothing back from them either. I just feel like I’m constantly hitting brick walls - I have no answers (I don’t even know what type of MS I have), no help with managing the condition, and no options for the future. I’ve looked at benefits, and I’m not entitled to them either (which was again my dads answer - if you’re sick, then you’ll be able to get benefits and carers - his world is very black and white). I just want someone to give my some practical and realistic options, not dumb advice that will never work in the real world. Has anyone been in this situation? Can anyone help me please?

Thank you so much,

One very stressed out Forest

Sorry for the long post - I just feel so scared, clueless and alone.

Forest

I didn’t want to not post, but I’m not really sure where to begin to help I’m sorry. How much longer are you training for? I imagine nursing is one of the careers where you might be able to get part-time hours if you need to once qualified. What are the options locally for renting a flat if you Dad moves north?

If you are being offered DMDs then you will have rrms I think, they are meant to help prevent further relapses which hopefully will make things more manageable - I know the NHS does have awful waits for consultants though.

Your tutor does not sound of much help, does the uni have some kind of pastoral/counselling support? Most do and they might be able to help a little more. The other place to try is the helpline for the MS Society 0808 800 8000.

Hi Forest, I too could not read your post and not comment even though I can’t offer very much. Has your uni not got a legal requirement to help students with special needs and surely M.S. comes under special needs. I know my daughters college offered her help to try and help her stay on and finish her course, unfortunately for her she was just not well enough to continue. As for your family that sounds like an awful lot for someone on their best day to deal with never mind all that you are dealing with. You cannot take care of your dad while you are so ill yourself so you have to try and get as well as is possible before you even attempt to offer any more help there, stress makes M.S. worse so you have to find ways to manage that. Would aternative remedies be something you could try, such as meditation (you could probably learn that on internet). I would keep phoning the M.S. branch until you speak to someone there, tell them you are at your wits end and see if they can speed up the referral to them, talk to your doctor and badger him to get the referral, speak to neurologist’s secretary and try and get her to speak to neurologist to get referral sent quicker. I am really surprised at what sounds like a very shoddy management of your disease, it would seem it is a bit of a lottery how well M.S. is treated and the help offered. I guess it’s the same for all diseases and illness’ not just M.S. I really hope you get seen soon and started on any medication that may help you. Take care and let us know how you get on. Linda x

Hi Forest,

Not surprised you’re feeling stressed out! More than enough for one person to cope with.

I wonder if you can self-refer to MS nurses in your area (some areas let you, some don’t), or if your GP can sort it out for you?

When I was diagnosed, I was told - if you’ll excuse the expression - sweet FA about MS nurses. I certainly wasn’t allocated one automatically, and if it weren’t for the frequent mentions on this forum, I wouldn’t have known such things exist.

I had great difficulty getting symptom relief, at first, because my GP was reluctant to prescribe anything, and kept saying: “The MS nurse would normally deal with this.”

“But I haven’t GOT an MS nurse! What am I supposed to do?” I only had the number of the relapse clinic, which I didn’t want to use, as I didn’t consider I was having a relapse - this was just day-to-day management.

The GP did eventually prescribe something (because they are allowed - just not the DMDs). Also, she eventually (about 2.5 years after diagnosis) got one of the MS nurses to call me, which was the first time I’d ever spoken to one (and fat lot of good it did me, as well - but that’s another story).

So I wonder if you can either (i) contact the nurses yourself, (ii) press the GP to do so on your behalf, or (iii) press the GP to start treating symptoms, explaining that you don’t want to (or can’t) wait all the way to Nov/Dec?

On the domestic front, given your dad’s problems, I’m inclined to agree you’d probably be better-off NOT moving to live with him. Have you been paying rent at the moment? Was it any more than would just cover your food and utility usage? I.e. have you been helping him pay the mortgage? If you have, it’s possible you might have some small stake in the house, and that he can’t just sell up and move, without recognizing your contribution. I’m not saying it would be much (I’m assuming you are young, and wouldn’t have been making a financial contribution for very long). But you might be entitled to something (I’m not trying to start a family fight here - it probably hasn’t even crossed your dad’s mind you might be due anything - but if your money has effectively been helping to buy the house, then you might).

In any event, it’s clearly not going to be sufficient to buy a new house, so I wonder if it’s worth a trip to the CAB to find out what help you’d be entitled to, if you decided to go it alone. People with disability usually get some priority on the council house waiting lists, but as you imply you’re not disabled enough to get benefits (me neither) I’m not sure whether that would work. As even RRMS is still a progressive condition, there may be some scheme to take account of anticipated future needs, and not just how you are today. Worth having a chat with an advisor, anyway.

I’m sorry you’re in such a horrible situation. Diagnosis is tough enough, without worries on the job or housing front as well.

Tina

x

Hi forest! Please take note of what Tina said! & good luck . X

Hi forest,

First, rummage round this website and find out which hospitals near you have a neurology department with MS knowhow.
Now you have some options. The first one is to start with the one you are at, or to change.
Either way, you can phone the MS nurse(s) (they my be just under Neurology Nurses) and give them the hard luck story:
“Student nurse, light-headedness, double vision, numbness in leg, and what do they suggest? Do you really have to wait for a Neurologist appointment in 3-4 months time?” Most of them canaccess the appointment bookings and may just be able to get you in on a cancellation.

Now, go to the welfare Department of the Students Union at your Uni and drop your problem on them. Your Tutor sounds like a waste of space - this is a bit unusual, since most Unis go out of their way to be helpful. It might be that you need to see the Head of Department instead (unless its the same person). If there is no option but to take a year out, you will have to make this decision before the new year starts (or you could be liable for a full year’s fees) and you want to be sure that you can pick up whare you left off. Whatever - do get that qualification.

Like the others have suggested, you need to get away from your father. It will likely take him more than just two years to move on from losing your Mum. Just as a real off-the-wall suggestion, has your local hospital got nurses accomodation that is not fully occupied - they might let you have a room cheap. If you don’t ask, you don’t find out.

Do take Tina’s advice and go to the CAB - you might just have an interest in your home as a property. It is not that you may get something out of it, but it might just be the trigger that your Dad needs.

Finally, remember, there will always be a sympathetic ear or two right here.

Geoff

Thank you all for taking the time to read my post, and to reply - it’s very kind of you. I’ll reply a little more fully tomorrow.

Tc, Forest x

Hi Forest,

Please take on bosrd all the advice you have been given Tina and Geoff always give fab advice, as does just about everyone else here.!!!

Just know that we are all here for you so don’t feel bad about the posts you do, (i’ve done them) and it helps to get it off your chest!!!

I feel so upset for you and the way you have been treated, with uni, your family and your gp, neuro, it’s unfair! you shouldn’t have to wait so long to see a different neuro! i was dx in March and apart from the local MS branch or leaving messages for my neuro and my Dr ( who thankfully is fab) i have no contact with anyone else about my MS ther is no relapse clinic here and no MS nurse as she retired and hasn’t been replaced, so generally i come on here and ask questions, have found out soo much from everyone on here!!!

I hope thimgs start turning around for you soon, MS takes a while to accept and get your head around but you will!!!

Thinking of you and sending hugs your way

Please keep us updated

Kate x

Hi all, and thanks once again for your responses - they’ve been a great source of strength to me and of great help.

I am Buddhist (just a beginner though), so I do do some meditation - in fact will be off to one of their meetings tomorrow night. The problem with placement though is that I can rarely make these evenings. I still have 2 more years to go on my training, plus an additional placement to fit in somewhere along the way (when I got my diagnosis earlier this year, due to this and other factors I have going on - I am having counselling for a major trauma, my counsellor believes I have PTSD though is not qualified to actually diagnose me - they brought me out of the placement (was bad with anxiety, then this on top, and the placement had a lot of issues), so I have to make it up at some point). They want me to try and complete 2 placements in one, but then I feel they need to sort out their mentoring system and my placement for me to do this fairly. Occy health have told them that I should be having a supportive mentor (this is more counselling related, but would help with the MS too I feel). I’ve had some info re my next placement which makes me feel that the personnel their will be anything but, and I’m getting rather annoyed by it all.

I’ve emailed my concerns about the placement, but of course everyone’s away at the moment, so they won’t do anything. I will try the Student Union welface department tomorrow, as well as the practitioner at Enabling Services (I did include her in the email I sent, but guess that she’s away as well). I’m also going to try CAB tomorrow to get some advice re my home situation and what I can do if placement really isn’t practical. I do actually own my own flat, but again it would come back to how would I pay my mortgage if I can’t sustain a full time job (it is currently rented out). I am currently living in halls at the uni, but I’m due to move into a share house with other students in early Sept. Once again the prob with this will come in if I have to defer, and all my loans etc… stop, and I can’t get or maintain a full time job thus pay the rent/bills. If I’m living down South still, then there are potentially a number of flexible part time jobs which I could do, but I don’t know how often I could do these, or how much they would bring me in.

I’m also going to try the consultants secutary tomorrow, see if I can’t get the appointment brought forward. I can + did try to self refer to the MS nurse in my area, but it was when she rang me back that she told me the wait for the neuro would be at least Nov-Dec time, and she could do nothing until after this. Her only advice when I asked her about my course and my problems with it was that if I wasn’t up to it, I’d have to take time off/out. Not helpful.

In regards to my local MS branch, I have been trying to get in contact with them, but they only have an email address, no telephone number, and are yet to reply. I do however know (through a couple of other people) someone else who has MS and I believe may be involved with the branch, so will try and get in contact with them and see what they say.

My head of course knows about the MS, and my PTSD including the event behind it (and my epilepsy), along with the head of placements, but I seem to be getting a similar reaction from them all - if you want to get on, then leave them alone and don’t make a fuss. It’s just too much like hard work for them, they like it simple. Because I’m doing nursing, I get my fees paid for me (NHS bursary), so I don’t think that defering will be a problem in terms of fees.

In regards to the uni’s legal position, yes I could quite imagine that they do have a legal obligation to make ‘reasonable adjustments’ for students with disabilities, but this seems to be counter-balanced to some extent by the NMC’s requirement for me to be ‘fit for practice’, and by the uni’s policy for students to be ‘fit for study’, and I have a lot going on.

I’ll update you as soon as I have more info. Thank you again for your responces,

Tc, Forest

Well I rang my local CAB, the neuros secutary, enabling services (from which there was no answer), and the student union advice service today.

CAB said basically what I thought already, that the only thing that I may be able to get at the moment is ESA (if I had to give up / suspend the course), and pointed me towards their adviceguide to look at it a little more - but it looks like it wouldn’t even put food on the table, let alone begin paying bills and a mortgage. They say that there may be others that I could get once I’ve started down that road, but they wouldn’t know until I was actually in that situation (which of course is little use to me).

The neuros sec was very nice, but had worse news. She couldn’t even see my referral yet, and told me that it could be any one of 3 docs over there (I have looked at other hops in the area, but this seems to be the one specialising in MS in the area - I may have another look if things don’t improve). She said the MS nurse had said I’d been in contact, but that the Nov-Dec date were the Earliest and I should expect it to be longer - they have really long waiting lists at the moment (she was very apologetic). She said she couldn’t check whose list I was on (of the 3 docs), or whether I was a normal referal or an emergency as they all had to go through the senior consultant (the one the MS nurse had mentioned) who was on holiday for another week. She did say that she’d ask him once he was back, and that she’d put my name down for any cancellations. But she cautioned me that cancellations were infrequent and that even emergency appoints had really long waits. She adviced going back to my GP, and if it got very bad going to A&E (what have things come to).

As I said at the top, I couldn’t get through to Enabling services at the uni (they are supposed to help disabled sudents, but I suspect that they are all on holiday, even though I have an email from them telling me to get in contact because things on my enrollment have change - don’t you love them!). I did however manage to get in contact with the student union advice centre, and I now have a meeting booked for Wednesday morning. The chap there seemed very helpful, and has even offered to come to a meeting with my tutors with me to ensure things are in place / considered for placement for me. On the family front, my dad has agreed (albeit by default, and with a little persuation from my sister as well) to come along on Wednesday, so that’s a start.

I’ll update you all again after Wednesday - hopefully the uni may at least look at what’s been said about this placement (which isn’t good, though I only have it on hearsay - but still think they should look at it, given what OH have said).

Thank you for your help,

Forest

Hi Forest, I know it’s not everything you wanted or needed but every little bit forward is better than where you were and hopefully maybe make you feel as though something somewhere is moving forward. I can understand your frustration as people on holiday all at once and you just need things to get sorted and know what you can do and who can help you get to where you need to be. I know my daughter when she was first showing symptoms the doctor said she was getting an emergency neuro appointment but she took really not well about 2 weeks later and was rushed to hospital where she was given C.T., M.R.I. and lumber puncture which gave them the diagnosis and she saw a neuro a few days later. She was in hospital for 2 weeks and then after she was out of hospital about another 2 weeks passed when she received her app for neuro, which she cancelled as she had seen one at the hospital and already had an M.S. nurse, so all in all in took about 6 weeks for emergency app to come through. If you don’t hear from the neuros secretary don’t hang about phone every couple of days to check that any cancellations are yours and that you are on an emergency app and if not how do you get put on to that. With something like this you need to really be pushy and not just sit back and hope to get seen by Christmas. Will keep fingers crossed for you on Wednesday. Good luck. Linda x

Thanks Linda x

Hi Forest

I just wanted to agree with you on the PTSD point - I had symptoms and ‘suspected MS’ 30 years ago in my 20s, and was just left to cope with tht bomb shell on my own. A few years later, listening to a programme about PTSD I thought - tha’s what’s happening to me! : flashbacks, acute anxiety etc. I’m pleased to say that 30+ years later I am still going strong, now SPMS but a very determined person… still working full time, running a household etc.

I wish you well and hope you take courage from the achievements of people on this site.

Best wishes

B x

Hi all,

Just an update following my meeting today (with the advisor and lady from my uni - I posted about it on a different threat, but all other background is here). Went well - the lady from my uni is going to meet with me, and people from my placement, on my first day, so that should hopefully negate any problems (or so the theory goes) and give us chance to discuss everything. It’s not perfect in that I still don’t know how I’m going to get through this next placement given how tired I’m feeling at present, but it’s probably as good as I could hope for really.

Take care,

Forest x

that’s good, at least they trying now! Good luck & take care Eleanor

Will keep fingers crossed for you that everything goes ok. Good luck. Linda x

Good luck Linda! I am here in London & every thing is lovely. They look after me bliss them. I ha an MS nurse too & she is lovely too. Had MS for 15 years now, I can still walk, sometimes use my crutch not all the times only for the passed 8 months . Good luck again Linda & very, very sorry that your dad got his on problems to deal with. Rahma x