Several Questions (any help welcome)

Everyday living
1

Hi guys!

I went to see my neurologist yesterday. First time since getting all the results back, and it was, well interesting. I’ll give the low down and then ask my questions…

so my neurologist is actually really quite lovely. He’s a nice guy, first thing he asked me was how I was feeling. So I told him the truth, I had been feeling down (well truthfully more than that cause I’m struggling to be positive at the moment) which he assured me was 100% normal and to carry on with my anti depressants (been on them before all this anyway) he did however tell me that my symptoms of fatigue, aches and pains etc etc may be worse because of the psychological and emotional impact of my diagnosis, which again is perfectly fine. He did however say he wanted to have my thyroid tested as I have shakes/tremors. He then went on to talk about the medication he wanted me to start, saying he would take me to the MS nurse to discuss things further. He also told me (which I knew but I think it was more for my parents needing to hear it) that the medication would not cure any of the symptoms, it is not to make me feel better but to slow the process down, so the fatigue etc I shall continue to have.

So I met an MS nurse, who was absolutely lovely. She told me she would give me info on my medication (Tecfidera) and then ring me in a few weeks to see what answer I have. To which i told her I had already looked at all info available and wanted to start taking it. So she said she would order it and it can take 4-6 weeks to arrive. She also said I did not need my next appointment to meet an MS nurse on April 1st now as it was to talk about medication so she would cancel it. She also told me to apply for PIP and a blue badge and to go to Citizens Advice to get help filling in all the forms. She also told me to get a new job after I explained a few things about my place of work and how my old manager didn’t want to get Occupational health involved as it cost too much. She wasn’t impressed to say the least.

So here are my questions:

1.) How long did it take you to accept your diagnosis and to not be scared of what the future may hold?

2.) Does anyone else with MS also have shakes/tremors or is this symptom from another cause? (Cause wasn’t sure about the thyroid test)

3.) The MS nurse said the Tecfidera would be delivered directly to my door, that I wouldn’t need to fetch it from a pharmacy and that is was free… is this correct? Because as far as I was aware none of the medication was free and we had to pay for prescriptions…

4.) Is it worth applying for PIP and blue badge? (My family want me to but unsure if it is worth all the hassle)

5.) Do work have to legally get Occupational Health involved? Because the MS nurse was disgusted that they hadn’t but I honestly have no idea.

Just incase people are wondering I’m 26, and this diagnosis came as a shock out of nowhere. Feel free to ask me anything to help answer any of this stuff or any info you want to know. And thank you for taking the time to read and answer.

Thanks

Di

2

Hi, I just want to say that accepting your diagnosis is hard and no specific timescale can be applied. I still struggle now with it 6 years on. So don’t be hard on yourself. Blue badge and PIP i would say do it, i delayed it and think this is also connected to acceptance. I would recommend getting assistance with the form. I am not sure about the legal requirements of occupational health but it does seem like a sensible approach. I have interactions with occupational health on several occasions and just starting process again. I know it is costly but you could contact access to work as they can provide funding for reasonable adjustments. The DMD drugs are delivered straight to your door, can be delivered to a workplace. Don’t be hard on yourself and take each day as it comes

3

Hello Di

No one has to ‘accept’ MS. After all, it didn’t ask for permission before invading your life! Saying that, I pretty much have accepted that I have MS. After 22 years it’s about time really. You’re allowed to feel scared and anxious about your future, to not accept the bloody two letters, to in a way grieve for the old you that had no health worries. After diagnosis people typically go through a whole range of emotions, including absolute rage and self pity. All of these feelings are valid, don’t feel like you have to roll up your sleeves, say ‘oh that’s that, OK, I can deal with it’, and just carry on happily just as you were before the invasion.

Re your questions:

It’s always worth having your thyroid checked. This is a simplified version of what the thyroid is all about. The thyroid gland basically informs the pituitary gland as to how much adrenaline to release. You can have an overactive thyroid (too much thyroxine in the blood), or an underactive thyroid (not enough thyroxine). Both types of thyroid disease can be autoimmune, just like MS, and there is a strong connection between AI thyroid disease and MS, ie many people have both.

Having the shakes or a tremor could be caused by MS, but it could also be caused by an overactive thyroid. This can make you a bit ‘jittery’ or a bit shaky. Basically if you have too much adrenaline, everything in your body works extra hard, including your heart rate. (Which in turn adds to fatigue.)

I’m not suggesting that you do have thyroid disease, just that the neurologist is right to suggest you have it tested. (I had an overactive thyroid years ago. It was cured by surgery and now it’s underactive - but that is easier to treat than overactive.)

Disease Modifying Drugs are prescription items like everything else. This means that theoretically you might be asked to pay the standard prescription charge. But often, the drug supply and delivery companies just don’t ask for the prescription to be paid for, they just supply the drugs.

Re PIP, you can take a free test to see if you might qualify, see https://www.benefitsandwork.co.uk/ for their self assessment test. You have to have had your illness / disability for at least 6 months and fulfil a number of criteria. If the test suggests you won’t qualify right now, you might want to put off applying. The forms are long and complex, the process is infuriating and it can make you feel like crap. But if the self assessment shows that you should qualify, then don’t let the process put you off.

You might qualify for a blue badge if you can’t walk more than 50 metres. Then again if you can’t walk 50 metres, you’d probably qualify for a bit of PIP, and that would entitle you to a blue badge automatically.

In terms of work, it’s completely up to you who you tell and whether you think it’s something Occupational Health should be advised of. If your MS affects your work, then yes, tell them. If it doesn’t, then don’t worry. If you’re finding it hard to get to work, look into Access to Work. That might help. See Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK

Best of luck Di. Keep coming on here if you have more questions or thoughts, or just for company among people who understand what you’re learning to live with.

Sue

4

If you are looking to get another job I wouldn’t pack the job you have at the moment until you do have the new job. Having m.s. may put some future employers off from taking you on.

5

Hello,

Sadly, I am struggling I only got diagnosed in December and confirmed in February. So yeh really not accepting it or taking it well which the people around me seem to be struggling with like if I say I’m not happy etc they don’t know how to be or like my work colleagues just avoid me and avoid talking about it, which makes me feel like I can’t talk about it and I get it people don’t know what to say to me but I also don’t know what to say to them and people are saying I need to make an effort and it’s like I’m struggling to make an effort to be positive and fight for myself never mind having to fight to get them to stay in my life!

The only reason I didn’t want to do it is because I wasn’t sure if I would get it. But my MS nurse said there is no harm in applying for it all and to seek advice from Citizens Advice to help fill it in.

See the thing is my bosses have done reasonable adjustments without them being involved but my MS nurse seemed to think they should be involved anyway which is where I am confused.

I don’t mind it being delivered to me, it just confused me that the nurse said I would not be charged for any of it because I thought it would be prescription cost.

It’s just hard, because I’m having to deal with this diagnosis and also the people around me but I think they forget it’s actually me going through it all and right now I can’t be the person I used to be in supporting all them because I need it but I hate asking for it. I’m used to being the strong one, there for others and helping them out, but right now, I can’t do it and people sadly don’t seem that bothered about me. I’m just struggling with it all.

Thanks for the help

6

Hi Sue,

I think the people around me (not my family) expect I should be expecting it by now and honestly I feel like I’m struggling more than ever. I’m finding it hard to be positive and see a positive. See it feels like people just want me to get on with it now and I just can’t because I have no motivation, I’m finding it hard and they don’t seem to get that. Which also makes me feel bad like I should be accepting it all and “moving” on but it’s just… complicated, too many thoughts and feelings and unknowns. And just yeh feeling pretty alone.

See that makes sense! Thank you for explaining it! I don’t feel jittery, just recently started to have tremors in my hands which is why I wondered if that was the MS but it is better to be safe than sorry and get it all tested. I’m sure they’ll let me know of the results to that soon.

See I assumed they would have to be paid for because I thought they were prescription but the nurse was adamant that I would not have to pay anything which is why I got confused. So basically the drugs are free then?

I read on the government site that it was having the condition 3 months, and ongoing for 9 months (well i mean got it for life) and I did do one of the forms before but my trouble is I’m too hard on myself and I’m like well yeh i can do that when really it’s more of a well I do it but it takes longer or I don’t feel safe doing it (like cutting with a sharp knife when I have tremors) and struggling to zip my coat up and tripping over my own feet etc. My MS nurse was the one who told me to apply for both. She said that the blue badge I needed to repeat about my fatigue and that I am able to walk but it would help in giving me independence after work. Her example was that I went to work and then decided to go to the cinema but the only car parking space was far away and I had to walk to the theatre, then i fell asleep during the film due to fatigue, woke up missed the film then have to walk back to the car, whereas with the badge I could park closer basically outside the door, and that would help with the fatigue and allow me to still live. But I dunno about any of it.

I mean work already knows as I was off 11 weeks and well I had to inform them and they thought best to tell my colleagues too so they can support me (which they don’t, they tend to just ignore me) but I just hate they can use it against me with the reasonable adjustments!

Thanks so much Sue, in all honesty I’m really struggling and feel pretty alone in it all.

7

Oh no, I would never do that anyway!

See my MS nurse said I do not have to tell them I have MS, she said you can put you are disabled in the forms but they have no right at all to ask what the condition is. She said it’s all about equal opportunity.

8

I think the m.s. ‘situation’ has become bogged down in meaningless cliches. We talk about ‘accepting’ - about being ‘positive’ about ‘moving on’ but they don’t really help us or mean anything.

(I suspect they are terms invented by people who haven’t got m.s.)

1 Like