Just out of hospital

New diagnosis and before diagnosis
1

Hi, this is my first post so I’m sorry for the rambling but I’m feeling so many things at the moment.

My story started on 30th October when I suddenly became very unwell at work with extreme vertigo and vomiting. Over the following 5 weeks this continued with next to no improvement. On my third visit to the doctors I saw a very different GP who completed a much more thorough examination and was alarmed by significant weakness on my left side and he immediately contacted the hospital and told then I needed a scan. Once I was at the hospital they completed a thorough physical exam, bloods, heart etc and admitted me for immediate fluids and a scan. 4 hours after having the MRI I had a neurologist sitting beside me telling me that they had found several myelinated lesions on my brain with the worst one being on the 4th ventricle. He said that they have various other tests to rule out other causes to properly diagnose, however everything strongly indicates MS. Given that my father had suffered this added to the weight of their diagnosis.

After 3 days of steroid infusion and finding anti-sickness drugs that actually worked I have been discharged and await my specialist appointment. The reality is I had been suffering for some time with foot drop when I was tired, extreme fatigue and burning sensation in my lower legs for some time but put it down to age and hormones. I had also failed a job related fitness test this year despite being usually fit and healthy but the beep test is perhaps not so easy when your legs don’t work properly.

so here I am out of hospital, still with some dizziness and legs that don’t seem to do what my brain is asking of them. I feel very week and shaky and sleeping so much . Is It normal to feel this way? Will it get better? What does my future hold? What happens about my job? All questions I sit her and ponder over. My poor husband has had the loss of his only brother, his mother getting cancer and now this to add to the worries all in the past 5 months.

2

Hello

It certainly sounds like you’ve been having a very rough time.

The neurologist doesn’t seem to have formally diagnosed you with MS, but neither did he not diagnose you. How very irritating and confusing.

So, I take it that you are now awaiting your next appointment, at which time I should think you’ll be expecting to be formally diagnosed (or not!). Assuming that the neurologist does diagnose MS, the next thing will be what variant of MS.

Most people are at least initially diagnosed with relapsing remitting (or RR) MS. If the steroids helped (even if it took weeks or months to have any symptom improvements), then that is what I would expect. This means that you could have ‘relapses’, where new attacks are made on your myelin (the substance that is supposed to protect your central nervous system) and you experience new or repeated symptoms. Either with or without steroids, the symptoms will completely or partially get better, or ‘remit’. Steroids are not a cure for a relapse, but they should speed up the time it takes for a relapse to remit.

(The other types of MS are secondary progressive and primary progressive. SP is what some, but not all, people with RRMS transfer to after some years, whilst with PP, there is never a period of relapse and remission. Progressive MS implies that there will be no remission from relapses, just a slow, or not so slow in some cases, disease progression.)

If you are diagnosed with RRMS, you can be treated with disease modifying drugs (DMDs). These are drugs which aim to reduce the number and severity of relapses.

But all this is putting the cart before the horse (so to speak). When you see the neurologist, you will discover what they believe has caused your symptoms. If MS, then you can discuss what happens next.

Meanwhile, you are most welcome to the forum. Feel free to ask whatever questions cross your mind or just offload some of your no doubt concerned worries and fear about the future. Let us know what happens next and if the members here can help at all.

Sue

3

Hi Sue,

thank you so much for this information and your kind words. it’s actually a comfort just being able to feel that I am not floundering here on my own and knowing that others have been or are going through similar.

At the moment I feel that I’ve missed all the beginning bit out and instead I seem to have gone straight into a major hit. I’m also aware that because I am 50 years old there is a higher chance it is PPMS which frankly scares me as this would most likely be career ending for me. The physio at the hospital offered me a stick , and as you can imagine I was mortified , I was running around just over a month ago and then thought I’d got a viral infection. There is so much to try and absorb. In the meantime I’ve started on the vitamin D as it certainly won’t do me any harm. Trying to stay positive but it’s hard .

Julie x

4

Hello Julie

Don’t write yourself off too quickly. Plenty of people are diagnosed with relapsing remitting MS in their 50s. And a relapse can take literally months for remission to feel like it’s happening at last. Sometimes it feels like you’ll never improve until one day you just wake up and realise that the weird pins and needles you’d had (or burning pain, blurry vision, stiff fingers, etc) has felt better for a few days.

I have actually thought for the last few years that I had moved from RR onto secondary progressive MS. Only to have two relapses within the last 8 months and now be talking about disease modifying drugs again. And I’m nearly 52 and have had MS for almost 22 years.

Only a relatively small number of people are diagnosed with PPMS compared with the vast majority (85%ish) with RR. So don’t expect the worst. Your career and fitness isn’t lost forever, even if you do end up using a stick, a hiking pole or a crutch for a while. At least you’ve got a good level of fitness to help you back to full capacity, or nearly. It’s when you start out with weedy muscles and a lousy core (like me! I didn’t even know what was meant by ‘core’!) that you have real trouble trying to recover from a neurological bombardment (ie relapse).

Even if it is PPMS, it can take a fairly slow course through your body, it isn’t the case that you’ll be diagnosed and then immediately be seriously disabled.

Taking Vitamin D is a good idea, but do get your levels checked to make sure you aren’t taking too much. It is possible to overdose on it.

Don’t beat yourself up for not immediately being positive about what’s happening in your life and to your body. It sounds like you are suffering with fatigue, pushing yourself on does not help beat real MS fatigue. Sometimes all you can do it rest. Do things a bit at a time. You do not have to straight away ‘accept’ MS, ‘come to terms’ with it or smile about it bravely. Give yourself (and your husband too) a chance to weep and wail at it. To swear and complain. To shout ‘it’s not bloody fair!’ Because, it’s really not. You didn’t spend all your life eating properly, staying fit and healthy only to end up using a stick!!

The time will come when you can look more calmly at the damned disease that appears to have waltzed uninvited into your life.

Sue

5

Oh Sue,

thank you so much. Everything you have said there is extremely reassuring and helps me enormously . I guess I have to wait and see , be patient and keep my fingers crossed. It does’nt help with the timing of everything as being Christmas I find myself home alone and missing out on all the planned festivities. I know my system has taken a massive hit but the fatigue is beyond anything I have ever felt before . I guess it is something I will be able to deal with better in time it’s just not something I’ve ever experienced before.

I have thought about how unfair it all is but then I tell myself I’m so much luckier than some. I’m also lucky that I have an MS specialist at our local hospital that I will see. In the meantime like you say I need to take care of myself and rest to allow my body some time to heal and embrace the luxury of time off from work for the first time in my adult life. Hopefully over the next few weeks I will start to feel more like me again.

Julie x