Hi, I am not sure i really am in the right place but hoping someone may have an idea. I was diagnosed with MS in 2015 after many symptoms such as losing feeling in 1 side of my body, optic neuritis 3 times plus many others. I had a MRI and my neurologist found several lesions both on my spinal cord and in my brian. He decided to follow up in 6months new scan showed the same. Regular appointments happend over the next 2years plus annual scans. Then in 2020 my neurologist found 2 other lesions on mew scan which made sense as I was having some worsening symptoms. So I had a follow up appointment and was told he was discharging me. I questioned why and was told that he believes that I do not have MS and just had a CIS (clinically isolated syndrome) and to contact my GP if any new symptoms or unusual for me appear. While it is great that I do not have MS I believe this leave me with no real diagnosis or actual help. Moving forward I have recently been struggling with swallowing and massive acid reflux. My GP is now having to send me for a camera as the medication is not working and for some reason I just can’t swallow! It can be liquid or solid and it just sits in my throat and cannot go anywhere until I cough or eventually slowly slides down. Eating a meal can take 2hours it has gotten so bad. My GP decided to contact the neurologist to ask for advice and potentially for him to see me again for her to be told it is not a symptom of CIS/MS so unrelated. Again while I’m happy this is most likely just me getting old haha I also agree with my GP that there could be more to it. I guess my question is do you think this all could sound like MS or am I just looking for answers that aren’t there? Sorry for waffling and I look forward to hear your opinions, thanks all Rony
Hello Rony
To be completely honest, your experience sounds utterly bizarre. One minute you have MS, proved by several lesions and several relapses. The next the neurologist decides it’s not MS but CIS. I can imagine that you are lost, confused and frightened by this sequence of events.
The diagnosis of MS is generally done by using the McDonald Criteria. See https://mstrust.org.uk/a-z/mcdonald-criteria for more information.
If you have 2 or more relapses and more than one demyelinating lesion in your CNS, then it seems clear cut to me that you have MS. You’ve experienced more than one relapse (several different symptoms typical of MS at different times) and have more than one lesion). This to me demonstrates dissemination in time and space (by which a diagnosis of MS is generally made). But your neurologist disagrees!
Swallowing difficulties do happen frequently in MS. Have a look at https://mstrust.org.uk/a-z/swallowing So it seems odd that your neurologist thinks that your swallowing is not typical of MS.
Is your neurologist an MS expert? Is there any other neurologist, perhaps one who specialises in MS, in your area? Do you have an MS nurse? If so, does s/he think you have MS? If not, that is unusual given that we should all have access to a specialist nurse.
Of course swallowing trouble which is directly caused by reflux may not be an MS symptom - I’m not medically trained so it’s possibly not MS at all. But for a GP to believe it is neurological in origin but the neurologist disagreeing without seeing you again seems strange.
Could you return to your GP and ask for more help with this?
This is of course just an opinion. I do hope you can get some (useful) help most especially for this latest symptom.
Sue
Hi all, I have recently been diagnosed with MS, December 2020, after 2y of repeating MRIs because I been having really bad headaches and my legs went numb from my knee down for a short period of time, where they found lesions but no symptoms other than what I said, the consultant decided that I need to have the lombar punction in order for her to be able to give me a diagnosis because MRI was same every time After I had my letter confirming that it is MS I have started to have different symptoms I have started to feel really tired and weak, tremors in my hole body, some sort of pain and rigidity and muscle twitching mostly my left leg but the twitching happens in my hands also and lower back pain and dizziness that feels like I’m moving/spinning but I don’t, and Now I don’t know if they have anything to do with MS or the fact that I’ve been working from home for almost a year now and I’m sitting down almost 8h a day with very little movement. I can’t stop to think what i did wrong that i now have this, how am i going to cope with work and a 5y old daughter and husband working night shifts, we don’t have any family here to help I don’t even know what type of MS this is as the consultant is saying that she thinks that I don’t really have symptoms and all this that happend after the letter is due to anxiety. I have loads of things to ask, if someone please can help me, currently waiting for another MS consultant to give me a call and speak about my diagnosis 1. Do I get to ask for treatment or the consultant decides if I need any 2. Do I pay for the treatment or not ? 3. Can I get vit D on prescription? Does that mean that I will still pay for it or not ? Currently I’m buying them myself , I’m taking 2000UI per day should I take more ? 4. What other supplements or vit should I take ? 5. Do I need to let the insurance company know about this as the nurse told me I only need to let DVLA know
Hi Nicki
Keep a diary of your symptoms to help you to remember when you next see your neuro.
This will also be helpful if you apply for PIP.
Make a big effort to get up every 30 minutes to keep the blood flow going.
Teach yourself Mindfulness Meditation - the Breathworks course is excellent and is available online. It enables you to keep stress at a minimum.
Evict stress from your life (yeah right!) it does far more harm than good.
Another good strategy is to cuddle and be cuddled. Your 5 yr old daughter is prime candidate for cuddle duty.
You should be assigned a MS nurse who will be an amazing help to you and will explain the treatments on offer,
You do not pay for treatment, thankfully the NHS covers it.
You can get Vit D on prescription but they are huge tablets (almost suppository size). Try them and see because I am a wuss.
A Vit B complex is a good supplement to try.
(ask your GP to prescribe the vitamins)
I take D3 softgel tablets from Amazon £11.97 for 12 month supply.
DVLA must be notified.
ask DVLA about whether you need to inform your insurance. Beware that they may put your premium up so be prepared.
Be strong as a lion!
you can do this.
Carole x
With supplements, have a read up about
- Alpha-Lipoic Acid and MS,
- Coenzyme Q10 and MS,
- N acetyl-cysteine (NAC for short) and MS.
All 3 are very important anti-oxidants. NAC may also be very helpful in supporting the body in its fight against Covid 19 (see Medcram in their Youtube Covid Updates for very detailed info on NAC and Covid 19. They also give a very clear explanation how antioxidants work more generally at a cellular level - for anyone who is interested and has an interest in science).
If you take a vitamin D3 supplement I’d suggest you get one which also has vitamin K2 with it (cheaper to buy together in one, than as 2 separate). Vit K2 tends to be low in patients with MS. Vit K2 is also necessary for the D3 to properly regulate calcium levels.
I agree with Carole on the Vit B complex. All the vitamin Bs are water soluble so the body just excretes any excess in urine if you have enough, so are pretty safe. Though there’s no point using high dose supplements and just producing expensive wee if you don’t need high levels!
BTW If I mention a supplement or herb, I always suggest people read up on them so they can make up their own mind, understand how they might work, how safe they are, and if there are any contra-indications with any meds they might be on. Most GPs don’t have a clue, with the exception of vit D, so good info online can be a much better source.
Hi Carole, Thank you for your answer Can I just ask what is a PIP ? I had an appointment with the MS nurse already, she was very nice and explained about the disease I’m still confused about treatment being covered by NHS as you need to be on some sort of benefits so they can cover which I’m not, unless there is another way, if someone can explain please I’m taking vit B complex and Vit d3, though not sure if I need to take any k2 or others supplements or vitamins The nurse recommended to take fish oils It’s very difficult to work my way around all of this
I assume you are a British National or come from another country which has reciprocal health agreements which allows you to use the NHS? If so:
Prescriptions on the NHS are currently £9.15 per item, unless you are over the age of 60 or on means tested benefits, or your income is below a certain level. However if you are having prescription medicines on a regular basis (and more than 1 a month) then you can buy a prepayment certificate which can work out much cheaper:
- 29.65 for 3 months, any number of items
- £105.90 for 12 months, any number of items
If you are given injections in a hospital outpatients clinic then those are free. I’m not sure if the DMDs come under the hospital rules (free) or normal prescription rules. Others will know the answer to that.
It will be daunting at the moment. Just take one step at a time. Allow yourself time to think things through - you don’t need to make rushed decisions.
As for supplements, do read up about them, when you feel ready to do so. That way you can decide whether you think you might benefit from taking them. Far better to know why you are taking something (or indeed why you decide to not take something) rather than just rushing in because someone said so!
Supplements are generally not available on prescription, with some exceptions, and they are usually cheaper over the counter than the cost of a prescription.
Hope that helps.
Thank you for your answer Ziola I’m not British National but to benefit from NHS, I have recently read and talk with a very helpful pharmacist about the prepayment certificate, Thank you for explaining I do want to try to make everything that is in my power to keep this under control as much as possible I started a very strict food diet ( no gluten, no dairy, no corn, no sugar, no legumes, and many more) hope it will help I have done 2 sessions of hypnotherapy and also been thought how to do it myself , I do found it does help a lot to keep me calm and eliminate stress as much as possible Currently waiting for the consultant that I’ve been referred to call me and discuss to see if I need to go on any treatment or not I’ve been prescribed by the gp some antidepressants but haven’t started them yet as I’m trying to keep my self up without the pills, it is very hard though Thank you
The paleo diet is often recommended as being helpful. Looks as if your diet is probably along those lines.
Hopefully the hypnotherapy will help with the depression, so you don’t need to take anything else for it. However, if not enough, 5-HTP seems to help some people with depression, as it is a precursor to serotonin, but don’t use if taking anti-depressants, as it could push serotonin levels too high. If you are interested, maybe ask your GP or pharmacist about them to make sure they don’t contraindicate any other meds. They are available as over the counter supplements. I tried them last year, and it felt as if my body was slightly warmer, slightly more relaxed, a bit like when you get a bit of gentle spring sunshine on you.
Hi Nicki
I’ve noticed a couple of your questions that haven’t been answered. To clarify: you’ve been diagnosed with MS, but not as the neurologist you’ve seen thinks you maybe haven’t been having the symptoms that you have! Odd. Hopefully when you are seen by the MS specialist you’ll get a definitive diagnosis.
When you do see him/her, assuming you are told it is MS, ask what type they think it is. There are 2 main groups of MS, one the relapsing remitting type (RRMS), which may become progressive (secondary progressive/SPMS) later. The other is known as primary progressive (PPMS) in which symptoms do not remit, but just continue to progress.
Most people are diagnosed with RRMS. This variant is characterised by relapses, also known as flares or attacks but which after weeks or months remit, or get better. This can be complete recovery from the relapse or partial.
If you are diagnosed with RRMS, you would be eligible for disease modifying drugs (DMDs). These are designed to reduce the number and severity of relapses. So long as you have entitlement to use the NHS (and it appears from what you’ve said that you do), you do not have to pay for DMDs. You don’t have to be on any kind of benefit to get free DMDs.
With regard to benefits, Carole mentioned PIP. This is a state benefit that is not based on your income, but on your physical needs for care and mobility. The initials stand for Personal Indendence Payment. You have to be fairly disabled to qualify for PIP; it’s a complicated system but if you have trouble walking or need help with personal care, and you are entitled to claim benefits in the U.K., it may be worth looking into.
There are a huge number of vitamins and mineral supplements which might help with MS. The only one that is agreed upon by most medical professionals is vitamin D. So it’s a good thing to be taking. But you should have your bloods checked by your GP when you take any vitamins to ensure you aren’t taking too much (this includes vitamin D).
Best of luck.
Sue