View Full Version : Been on the MS Website and future is looking bleek
I have been having a few neurological symptoms for the pass year now. Started with shooting pains across my foot, creepy crawly sensations the left side of my face and left side of my back. Numbness in my ring finger (for months). Other things. I have seen the neurologist. About month ago. Now I have a brain scan this coming Sunday. Whilst I am not afraid of the scan. I am scared, petrified of the days after the scan. The results. I know that is normal. My brain has gone into hyperdrive. I went onto the MS Society website and the emotional, psychological and financial upheaval is beyond my coping. I don't want to be a burden on anyone. I don't want a slow death, I don't want my life to erode, I don't want to be immobile. Nor did those who have this dreaded illness. They say roughly 100,000 people have MS. Seems a lot more.
I truly believe there is something neurologically wrong. I know that. Then next three weeks (results) I am going to try to calm my brain down. But a new symptom rears it's ugly head I am back to square one and the fear takes over and I really can't see straight. I dare not tell my partner because he has own stresses. I am of a good age, so I should think I had my youth, what will be will be but I can't.
Serenity1990
08-07-14, 09:00
Hi Beth.
I'm in a similar boat right now.
Firstly though let me reassure you that neurological symptoms don't always (in fact rarely) equate to MS. As one neurologist put it there are only a handful (about a dozen) neurological symptoms but hundreds of neurological illnesses: as such the symptoms overlap almost entirely in each. Rather it's the pattern of symptoms that's important.
The MS Society site/forum is really not a place I'd recommend, even if you do have it. Firstly there are an awful number of people posting there who haven't been diagnosed with it and won't be because they simply don't have it, but they're convinced they do. Generally the other members are very supportive (and arguably rightly so) of these people. But as someone reading the site one can easy get the impression the disease follows a different pattern to what it does or that it's more difficult to diagnose than what it is.
What else can cause such symptoms? Well plain old anxiety perhaps. Though when stress hormones become a permanent feature in your endocrine system they can cause a number of secondary disorders such as BFS, FND, some argue Fibro etc. that have the same or similar list of symptoms to MS. These illnesses are far more common - around 20% of neurology outpatients have FND, for instance. "Functional" just means the nervous system has stopped functioning correctly but is free of any disease. aboutbfs.com and neurosymptoms.org are good resources.
Secondly the MS Society is a very negative place. Now I know a little about the disease due to a family member, and through her I met dozens of people with it. In the 60's a neurologist noticed that myelin has a very similar molecular structure to animal fats, and that those with MS digest saturated fats quicker. By eliminating saturated fats from his patients' diet in 95% of cases he halted disease progress permanently or reversed it. Various neurologists have since devoted their lives to researching this, and have adapted the diet in accordance with the research. There is another MS site on which members who subscribe to such a view are affected much less, and you routinely see posts in which people have their decades-long diagnosis reversed after a few years treating themselves in such a way.
Why isn't this accepted in modern medicine? Well some might argue it's because each of the MS drugs costs tens of thousands a year and all of the university research departments get the majority of their funding from drug companies. Less cynically the general rule in medicine is everything needs to be proven with double blind randomised control trials, with a random and unidentifiable treatment and control group. Now how do you develop a control group with a diet? The reality is it seems to be the case that those who want it fixed with a pill stay on that site, those who take a more proactive approach stay on the other one.
Aside from all the above and sticking with conventional medicine, a cure genuinely isn't far away. They've been saying this for years, but doctors have already cured in in the lab on animals and early trials on humans have been universally positive, though they need to wait a few more years to see how permanent this is. This has been achieved through stem cells and should be available as a treatment within the next few years.
I guess the point I'm trying to make is you probably don't have it, but even if you do there's stuff you can do for yourself so kick it into touch. But please remember that there's a number of disorders that have the same list of symptoms which are caused by stress and anxiety, and anxiety can cause such symptoms all by itself. Good luck with the scan, believe what the neuro says and think positive! :)
Crying my eyes out but thank you Serenity1990 for your words of encouragement and positivity. It's just that I know 2 people that have this disease and they are suffering. Both are now immobile and need constant help, one no longer speaks. MS is so random and so are my symptoms.
Serenity1990
08-07-14, 11:41
That's the one thing I disagree with actually: it's anything but random. That's what helps neurologists diagnose it, symptoms follow very particular patterns.
I just saw your previous threads, you've had previous neuro appointments and MRIs, is that correct? How did they go?
Catherine S
08-07-14, 11:59
That's a great post Serenity and very informative.
ISB
Hello there Serenity,
I had a scan about 10 years ago, maybe a bit less 7 years. The MRI results. All clear. This time I will have the dye as well.
Serenity1990
08-07-14, 12:48
Hello there Serenity,
I had a scan about 10 years ago, maybe a bit less 7 years. The MRI results. All clear. This time I will have the dye as well.
Very best of luck then. Regardless of when the initial MRI was, if it was clear you'll almost certainly be fine. Out of curiosity what did your neuro say he suspects?
Please stop worrying, it won't help!
The neurologist said nothing about the results. I was given the all clear and that was all that mattered he said. But my symptoms then and my symptoms now are very different. It's hard not to worry, I am trying to distract myself. But I always come full circle or a new symptom rears it's dirty head when I am getting use to dealing with an older one. My body feels as if it is attacking itself.
Serenity1990
08-07-14, 14:48
http://www.nomorepanic.co.uk/showpost.php?p=373591&postcount=3
ankietyjoe
08-07-14, 18:55
I have been having a few neurological symptoms for the pass year now. Started with shooting pains across my foot, creepy crawly sensations the left side of my face and left side of my back. Numbness in my ring finger (for months). Other things. I have seen the neurologist. About month ago. Now I have a brain scan this coming Sunday. Whilst I am not afraid of the scan. I am scared, petrified of the days after the scan. The results. I know that is normal. My brain has gone into hyperdrive. I went onto the MS Society website and the emotional, psychological and financial upheaval is beyond my coping. I don't want to be a burden on anyone. I don't want a slow death, I don't want my life to erode, I don't want to be immobile. Nor did those who have this dreaded illness. They say roughly 100,000 people have MS. Seems a lot more.
I truly believe there is something neurologically wrong. I know that. Then next three weeks (results) I am going to try to calm my brain down. But a new symptom rears it's ugly head I am back to square one and the fear takes over and I really can't see straight. I dare not tell my partner because he has own stresses. I am of a good age, so I should think I had my youth, what will be will be but I can't.
Just so you know I get all those symptoms too. I've had them on and off 3 times in the last 7-8 years and they always appear when I have a bout of stress or anxiety.
The last one was the worst as I had all sorts of health and financial issues going on, and it got to the stage at one point where my left pinky finger was moving continuously even when I was asleep. I also had crawling skin sensations on my left leg from the knee down, numb sole on my left foot, 'dead' left arm and constant confusion and speech issues. Turned out (as usual) to be 100% stress related, most likely from tense muscles from sleeping on the same side all the time. First time it happened I ended up with a trapped nerve in my left shoulder and lost about 90% strength in my left arm.
Good luck with the test, I bet it comes back clear.
New symptoms have appeared. Can't see for a few moments. Very frightened.
Serenity1990
09-07-14, 22:04
Ok what happens when you can't see?
Hi Beth 28.
I too have suffered creepy crawly sensations, sharp shooting pains all day long over all of the body, a big toe that would move on it's own and a dead right-arm, plus many, many more. Once I started to reassure myself that it was Anxiety, that slowly diminished. I still get the off occasional one and some off days, but nothing like it was before. What ever you do, DO NOT GOOGLE YOUR SYMPTOMS. We've all done it, and regretted it. The advice on the Net is so loose and not always accurate and it will make your Anxiety worse. I know its difficult, but try to keep positive. You were ok 10 years ago, so there's no reason why you shouldn't be ok now. I know I am making it sound easy, but your Mind is playing a Game with you and you have to trick it and say to it; 'I don't care watch you chuck at me or give me to make me Panic thinking there's something wrong with me. I am healthy and I am not going to let you take my Life away from me.' Eventually it will get fed-up, try a new symptom with you; like my latest is a red rash or things that look like blood clots. So, I tell myself; 'The rash is stress and the blood clots are bruises'. And, believe it or not, they go away within hours and sometimes minutes. You can have everything checked out by your GP/Hospital, so that puts your Mind at rest, but you must believe them when they say everything is OK. Otherwise you will keep torturing yourself and make yourself worse. You have to be tough with this, Anxiety is a Demon that needs to be eliminated!
Serenity1990
09-07-14, 23:08
Beth I hung around for a whole in case your replied but I notice you're now offline.
The vision issues are good news and bad news. They're good in as much as they don't sound at all like like issues caused by MS, especially the quick resolution. The bad news is you had such a severe symptom, and visual loss is always a medical emergency. Yes stress can and has caused this in people but it's rare.
My advice would be to visit your local eye hospital. Most have A&E units and they've got all the specialist equipment on hand to work out what's going on. :)
A new symptom has arisen now. Moments when I can't see. Very frightening. That I know isn't an anxiety symptom.
What happens when you can't see? Have you seen a doctor last night/this morning?
I think a symptom like this needs checking pretty quickly, as your sight is very precious. However, it doesn't mean you have ms. Let us know how you get on.
Beth, do you go completely blind or is it foggy? Fogginess is a Symptom, I had it. If you cannot see at all, go and see your GP or go to a walk-in Clinic.
Very scared now about the brain scan. I was alright up to a minute ago when someone was talking about a colleague who had a fall and they found out he had a brain tumour. Petrified. I don't want to go. Who is going to look after my mother? Absolutely freaking out
Serenity1990
12-07-14, 17:55
It'll be just fine. How long do you have to wait for it? :)
My scan is today. I am extremely nervous. I am informed if there are any problems by an appointment. If my appointment stays at its original date later in the year. I am all clear. If a letter comes before then, then there is a problem.
The viewing problem - everything turns grey. Not black but grey.
I was diagnosed with BFS many years ago but the neurologist was concerned that the left side of my face didn't move as well as my right. My partner said he saw the left side of my face twitch over month ago but he didn't want to concern me as I would start worrying. I have numbness in my right ring finger and that is what the neurologist thought I should have the MRI to rule out MS as it was a concern.
Good Luck Beth. Hope all goes well :hugs::hugs::hugs:
I get my results in five working days. But I haven't been home just in case the letter is there telling me to make an urgent appointment.
I want to be strong but can't stop worrying.
Hi Beth-
I just wanted to reassure you. I suffer bad health anxiety and have had horrible things going on in my body for the past year. It started off with pain under my left rib (which i'm still trying to get to the bottom of-currently panicking about bowel cancer!), then I had a sudden onset of extreme dizziness, everyday felt like there was a vice on my head. I was off work for 6 months, very down, was getting constant shooting pains in my head and cold sensations on my skull.
Then one day a couple of months ago, my left arm and my leg leg wen all tingly. I thought I was just sitting funny but I moved and it didn't go away. Fast forward to the next night- still tingly and in full panic mode. I went to a&e and they did a neurological assessment and a couple of other basic tests. The doctor ordered an urgent neurological appointment (finally). I asked him what it could be (at this point I was thinking brain tumours, aneurysms etc). He said that it could be two things: 1- absolutely nothing and 2-MS.
I asked him how it could possibly be nothing, and he said that there is a thing called functional central nervous system symptoms- sometimes people suffer from neurological symptoms and there is nothing causing them, our body simply fires off random signals but it doesn't damage us and is not caused by any disease. He gave me a great website on this, on the website you can find people with all sorts of crazy symptoms with no disease, it is mostly caused by emotional stress.
Anyway, I needed an MRI scan which I had a couple of weeks ago and still waiting for the results. I was terrified at first but now I am completely calm about it, mostly because I have done a lot of reading up on MS and it's not such a scary prospect to me now, there could be a lot worse things.
One of my good friends has MS and I phoned her when it was first mentioned that I might have it. This was the best thing I could have done, she was diagnosed 4 years ago and has only have one relapse since then which only lasted 3 weeks. She lives a full and busy life. She's not even on medication at the moment, she self medicates with a healthy diet, low stress, lots of sleep and a positive attitude.
Everyone with MS is different, that's what is difficult about the disease, but the majority of people live long, full happy lives, have children, jobs etc. In most people there are adjustments that need to be made but MS has the same life expectancy as people who don't have it.
I hope this helps and encourages you x
@Hannah25 how can you bare the waiting of the results.
I had my scan on Sunday and the only reason I am not screaming is I don't want to scare the neighbours and annoy my partner. How do you accept what is an illness that is so different from person to person. I know two people who have MS. Both need constant 24hour help, one can not speak now. One was diagnosed in 2007 another 2002.
Serenity1990
18-07-14, 12:13
Five days! I had to wait three weeks for mine, I think that's what really messed me up!
You'll be fine, I promise. Feel free to PM me any time you want. :)
I phoned today and they said it will probably be another 2 weeks. I guess my anxiety has moved onto other things, as it does haha, but I'm happier that at least they will know what's wrong.
I understand how difficult it is to not just go straight to the negative, I always think of the worst case scenario. But I'm really trying to overcome that.
You know two people who have MS and need 24 hour care, but there are also maaaany many many people who live fairly normal lives with it, so why, if we were to have it, should we be the bad cases? There is just as much chance for us to have the better cases.
And let's not forget that there is still a lot of hope that we don't have it!
Based on the fact that we are extreme anxiety sufferers, and so many people who suffer anxiety complain of neurological symptoms, it is also likely that the symptoms are caused by stress (hard to believe I know but there is so much evidence for it).
Us anxiety sufferers have to go against our natural thought patterns to jump to the worst conclusion in order to live better, fuller lives.
I will try and find that website now about the functional nervous system symptoms.x
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FOUND IT!!
But a message is coming up saying I can't post links until I've posted 10 posts and I've only posted 8. So I will post it below.
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Hmmm still not letting me post the link, i'll type it with spaces between.
Ok, so this site has loads of cases of people with a while range of neurological symptoms with no disease causing them that can be overcome. It even has a section on health anxiety.
Have a look!
FOUND IT!!
This website is fantastic for anyone suffering neurological symptoms. It has cases of really extreme symptoms that are not caused by disease and can be overcome.
neurosymptoms. org (with no spaces)
Serenity1990
19-07-14, 00:32
I think I posted the FND link I one of my early posts in this thread - apologies if not.
FND is really extreme and I doubt many (if any) if us on here have that, however it does just to to show how extreme somatic neurological symptoms can become. So yeah, pretty much whatever symptom anyone queries on her it could well be somatic anxiety.
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