Last reply 1 year ago
CIS to diagnosis

I’m not sure I even have a question to ask but wanted to put my words down for the first time. It’s been 3 months since I had my first MRI (spine) and had my second MRI (brain) a month ago. I’m due a lumber puncture, blood tests and another full MRI in a couple of weeks for a hospital day visit.

The NHS have been brilliant but it’s not very joined up. My first scan was private as my symptoms were so bizarre and I was really worried (I had a PPI refund so chose to invest it in me and am glad I did as it has speeded things up a little).

My neurologist visit was great, diagnosing CIS on the basis of this one MRI I’d had. I am not even sure she’s seen my more recent brain MRI as the results went straight to my GP following an earlier referral (confusing). I went for a drug review with my GP last week only to be given my MRI results (which show multiple lesions, a number active). It knocked me for six as wasn’t really expecting it. I originally thought I had a trapped nerve, but at least I’m not imagining it all.

My GP said MS is now highly likely based on the MRI reports. I had an emotional meltdown for a couple of days but am back on track again (for now anyway). I’m on Pregabalin for some of my nerve symptoms but am not sure how long I need to take them – the idea of being on some of these drugs long term is a bit scary though know they are necessary (and this has really helped). In the past I’ve not even taken many pain killers or even suffered very much with my health. This has made it more of a shocker for me to take in I think.

I have the lumber puncture next week which I admit I am really worried about. I wondered what others’ experience of this has been?

After these tests, I wait until the end of June for my next neurologist appointment. It all seems to be a long time but the one thing I am learning is to let go and be more patient. I’m grateful for any insights you may have about managing yourself during this weird period of limbo. I appreciate that some people have waited years to be diagnosed or even be considered for tests, so am lucky in that respect.

Chris

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stumbler
1 year ago

Hi @columbosdog .

It is all a bit overwhelming when we have to learn that we’re not really that indestructible. However, you seem to be adopting a philosophical approach to the situation. This in itself will be helping you, as stressing about the situation can exacerbate the symptoms by causing more lesions.

It’s understandable that you can’t document any questions. These are probably whizzing around in a bit of a mess. It would be wise to make a note of any questions, so that you have a list you can use when you see the Neurologist.

Don’t get over-concerned by the lumber puncture. The more relaxed you can be, the easier it will go. You’ll need to lie still for a couple of hours after the test. You’ll need to keep hydrated. Caffeine drinks aid your recovery.

In the meantime, try to avoid Dr. Google. This will only locate horror stories that are out of context. Stay with creditable sites like the MS Trust and MS Society.


columbosdog
1 year ago

Thanks so much. It is still a bit unreal but know I’ll get there. I’m a bit slow and fuzzy brained too so am starting to collect my questions. Thanks for your advice about the lumber puncture. I am very capable of drinking a lot of caffeinated beverages so this fills me with joy! 😊

I will avoid Googling – that was the first bit of advice my GP gave me. I have resisted all urges up to now but did look at the NHS info, MS Trust and MS Society when I had the news last week, to try and inform myself better. Here too of course as this looked informative and not scary.

Thanks again for responding. 😊


emzxx
1 year ago

hi , I am in the same position as yourself I am classed as CIS at the moment waiting to go back to see my neurologist soon. I had mri scan and lumbar puncture which showed inflammation and few white spots.The lumbar puncture wasn’t no where as bad as what people had told me it was going to be like , felt like a bee sting until it was numb then just like someone was pushing on my back and before I knew it it was all over, do not google it (like I did) I worked myself up that much and it was no where near like it was made out to be. I did feel really dizzy for couple days after so just took few days off work and rested as much as possible until the fluid had rebuilded and drink plenty of fluids and caffeine drinks help, but honestly was not painful more uncomfortable but didn’t last long at all , you will be fine. let me know how you get on , take care x

its helpful to go with a partner or someone your really trust on the lumbar puncture because the more you can focus on something else the easier it will be (and less risky). Its really hard not to move around and having someone talking/holding you while thats done seems to help if possible.

My two cents are that there are a number of lifestyle modications you can start making now. In addition the more you learn about your options the quicker you can make decisions you feel comfortable with and not stretch out the number of appointments.

My wife was diagnosed last year and we carefully follow OMS (overcomingms.org) but there are many others out there. We choose something that was scientifically based and saw the value of using drugs where appropriate. So while it might be overwhelming to google MS, I would go to a site like a mentioned or this one and read up about it. There are lots of options and things you can do. The site I listed is full of hope and things that might really help your overall outcome.

Lastly our experience has been if you know how to talk to a dr they will be more likely to think through the options. If the recommend one drug and you ask something like “how does the pml risk compare with another”, they will know you are an educated patient and likely give you better service. I think you dont want to go one appointment to think about it, and then queue up for another appointment months down the road.

Through this site and others, you should be able to map out a course of actions that are you comfortable with and be prepared to move quickly with your Dr. Thats my thoughts at least, but I would approach it


walkermonique
1 year ago

You must be so overwhelmed right now! Writing down any questions and symptoms that are new is the best advice I can give. I thought it made me a hypochondriac so didn’t do it but I find when I walk into the doctor’s office I forget most of it. If you have a loved one that can go to your results appointment I recommend it. If you think hearing it is probably MS hits hard that final diagnosis appointment will hit you harder. Going in to it I thought ‘just say its MS and we can get on with it’ then when they do it hits home that you actually have MS. The question mark next to it has been removed.


columbosdog
1 year ago

Thank you emzxx for sharing your lumber puncture experience. All the best for you at your neurologist appointment too. Take care and good luck xx

californiadreamin thanks so much. I spotted a link to OMS somewhere too but hadn’t investigated so will do. I’m all for educating myself and don’t want to be sidetracked by less helpful sites. Thanks again. I hope that you and your wife have a pretty untroubled journey through all this. You sound like a great team. I’m lucky to have a lovely partner who is being very supportive. I tried to shield him from a lot of what I felt in the beginning but he came to my neurologist appointment, saw me undertaking the sensory and balance tests and the penny dropped. He’s being brilliant and wants to be a part of it all.

walkermonique I felt like a real hypochondriac for a while and did keep a symptom diary. Now I am coming out of the symptoms (with the help of drugs!) I look back and am shocked at the range and intensity of what I experienced over the last 3 months, like a bolt from the blue at 47 with no previous symptoms. It was all real and not just imaginary (had lots of friends and colleagues telling me I was just suffering from anxiety or the menopause). I am so glad I kept it as in my wool brained state would have forgotten half of them. The neurologist also found it very helpful. She was brilliant in fairness too – so thorough. Even my GP was impressed by the report she send us. My partner will come with me thankfully – I am dreading it and will be glad to know for sure, so we can plan ahead.

Thanks again all. I’m very glad I found this site and posted here xx

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