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Can anyone help?

I had numbness in my lower body since Christmas. Had an emergency MRI on my spine which showed nothing sinister. Had a battery of blood tests and nerve conduction studies-again all normal.

Went back to see my neuro in February who made me feel like I was making it up. At this point, felt difficult to run owing to heavy legs and persistent numbness which had diminished but returned again when I was stressed at work. He asked me was I happy with the tests done. I said do whatever you need to do to get me back to normal. He organised routine MRI brain and vitamin D tests.

Had MRI early May. Saw consultant days later. Patches on my brain suggestive of MS. Also vitamin D rock bottom low. He said we could do nothing! Informed him I wanted all tests done. Now having lumbar puncture and vision tests next week.

Does anyone know

  1. if they can tell me what type of MS I may have (praying for relapsing remitting)

  2. what kind of treatments you’d get?

Thanks, very frightened young woman.

First of all, well done for being strong with the neuro - it’s not always easy! Secondly, hello :slight_smile:

If your legs going weird were your first ever bout of MS-like symptoms, then the neuro will almost certainly not be able to diagnose you with MS because you would need to have had at least two attacks or at least a year of worsening symptoms. There is a very good reason for this: there are other conditions that can cause one off attacks very like MS (e.g. ADEM), but that never happen again, and there are some people who, for whatever reason, only ever have a single attack of what seems to be early MS. So although it must seem to you like MS is on the cards, there really is a chance that it won’t ever develop.

IF it turns out to be MS, then the fact that your legs improved suggests RRMS. Stress, heat, viruses, infections and fatigue tend to make symptoms temporarily worse, so don’t worry about that.

As far as treatments go, people with RRMS who have had at least two “clinically significant” (i.e. serious, disabling, debilitating) attacks in two years are eligible for disease modifying drugs (DMDs) in the UK. These are not a cure, but can reduce the number and severity of attacks that we have, delay disability and increase life span. If you want to know about DMDs, the best place to start is the msdecisions website, but I think it’s jumping the gun so I wouldn’t do much googling if I were you - it may turn out to be a waste of effort and just cause you more worry.

I hope that your GP is sorting out your vitamin D? You may find that you feel much better as this gets back to normal, especially the heavy legs.

I know the thought of MS is very frightening, but try and believe someone who’s had it officially for 15 years and unofficially (from first symptom) for 29 years: it is NOT the end of the world. Life really can still be good.

Karen x

Just to echo what Karen has said, Tuesday this week was the 19th aniversary of my first symptom but I was only officially diagnosed in September last year. ms has always been at the back of my mind but it hasn’t stoped me living my life. I am on another thread on here today talking about running half marathons! So, while this is sonething we don’t want in our lives you can still live your life the way you want it. Good luck with everything and take care.

Thank you for beautiful messages. am reeling to be honest. worse that im a health professional and have seen the worst side of MS. Anyway will keep my positive outlook, ironically the life and soul of work and non work life! and trust in what will be will be.

Thank you for beautiful messages. am reeling to be honest. worse that im a health professional and have seen the worst side of MS. Anyway will keep my positive outlook, ironically the life and soul of work and non work life! and trust in what will be will be.

Hi anon, Just wanted to say hi and good luck. Janet x

I think that medics often get a skewed view of MS as they tend to care for and work with those MSers who need help the most, ie those who have been affected most or are having particularly bad attacks so it’s no wonder that the possibility of having MS themselves can be so alarming :frowning: Of course the whole population of people with MS includes some very severely affected people, but they are in the minority and have often been diagnosed for decades; most of us don’t use wheelchairs at all and many have very little or no obvious disability, some even after many years. And the words “decades” and “many years” are a huge plus: so many other conditions don’t give people the chance to have them. And it’s amazing the fun that’s possible despite MS, even using a stick or a wheelchair and rattling if shaken! :slight_smile: Kx

Hi!

I would like to share my story. I hope it helps. I have been having some on/off symptoms such as waek arm (6 months), tingling and paresthesia in my left leg (2 months), ringing in my ears (2-20 times per day for a month), strong (almost disabling) fatigue in the beginning of May and depression that accompanied fatigue. The fatigue was almost disabling, it was the reason why I had to called on sick at work and went to a hospital. In the hotpital: MRI - clean, LP showed 2 O-Bands (which can be MS, but not 100% suggestive) and slight delay in VEP. My VitD showed 10ng/ml (normal - 30-100). So I did not get the DX.

So I started taking Vit D supplement urgently. I started on the 5th of May. Since then my condition improved a lot. After starting taking 5000-8000 IU dayly my fatigue was gine in one week, along with depression. I still have some paresthesia in my left leg, but it is much better now. But most importantly by now I just feel much better in general and I definitely have more strength and energy than in the beginning of May - when I presented myself in the hospital. So my advice is to focus on VitD, whether or not I have MS it helped me. Now I added Magnesium and Zinc to my supplement list.

Also since I sterted having those MS-like symptoms I researched a lot on the matter of diet and altered my diet according to Swank’s diet recommendations. It may have also helped. It seems like a healthy diet even for people, who do not have MS. I still feel a bit weird, but much better.

I am not a doctor, but just sharing my experience.

Good luck!

Hi there, I just wanted to address the ‘myth’ that being diagnosed with PPMS is ‘worse’ than being diagnosed with RRMS. This is not necessarily the case - this disease is hugely variable and someone with RRMS can have far more symptoms and feel much worse than someone with PPMS and vice versa. It can be true that people with RRMS can have few symptoms for years and not get much worse but MS can plateau and people with PPMS can be stable for years too. MS is MS and a diagnosis is not the end of the world, whichever type you have. Hopefully you will be lucky and won’t have it at all! Teresa xx

Just to give my twopenneth worth following on from Sunnybob’s post: To my knowledge: - Vitamin supplements treat vitamin deficiencies. Some vitamin deficiencies can cause neurological symptoms. Some cause symptoms that can be mistaken for neurological symptoms. It is very easy for people to think they have MS when they in fact have a vitamin deficiency. - Most people with vitamin D deficiency do not have MS. The same goes for all vitamins. People with MS are more likely to be deficient in vitamin D and B12 than people without MS, but most are not. - A lack of vitamin D in the womb and while growing up is implicated in the development of MS. There is growing evidence that taking vitamin D supplements can help to reduce the effects of MS ongoing, but vitamin D supplements will not reverse any existing MS symptoms. They will of course treat vitamin D deficiency and its symptoms which include pain and walking problems. - No vitamin has been shown to reverse the damage caused by MS. - MS relapses are utterly unpredictable. They start and stop randomly and no one knows when it will happen. This means that it is very easy to conclude that doing something (eg taking a supplement) helped one to recover from a relapse. It’s the “lucky pants syndrome”: attributing success to something that very probably had no effect. The unpredictable nature of RRMS means that the only way to know if something really works is to study it in a very controlled way: giving just that thing to a large group of people and comparing their MS over time to another large group, similar in all ways except that they are not taking that one thing. - It is very sensible to eat healthily and ensure that our bodies have the right balance of nutrients to be as healthy and efficient as possible. It is certainly rather daft to be struggling with MS symptoms and not care about adding Type 2 diabetes, heart disease, liver problems, vitamin deficiencies, etc, to it all. However, there is very little evidence that diet changes the course of MS. There are, however, lots of books and websites promoting “special” diets for MS. None have been properly trialled. It is a safe bet that almost(?) all will have absolutely no effect on MS. - Dietary changes are generally slow to take effect: in all people, with or without MS, they will often take months or longer to change serum markers. - There is no doubt that many people reading this forum do not have MS. In which case, eating healthily and taking appropriate supplements may solve their problems. For those among us who do have MS (or some other neurological condition), eating healthily and taking appropriate supplements will help to prevent us getting other conditions and may help to lessen the effects of MS ongoing, but it’s not going to solve anything :frowning: - A final point: it is all too easy to blame everything on MS - don’t! A leading cause of death in people with MS is wrongly assuming that something is because of MS :frowning: A new or worsening symptom may well be your MS, but it may be a vitamin deficiency, too high a level of something, a TIA, liver or kidney failure, a cardiovascular symptom, etc - so please don’t get complacent. Kx