In Limbo and looking for clues

[oracleseer]

Hi, thanks for a very useful forum. I'm not yet diagnosed with anything as I don't currently have a doctor, have recently registered but won't get to see him for at least another week.
I've been suffering tremendously over the past 6 months, but it's now apparent that I may have been ill for a lot longer.
I'll start from the beginning in the hope that someone could tell me if my symptoms could be MS.
Three years ago I had returned to the UK after traveling for several years. I found a job which included accommodation but found myself getting incredibly tired randomly throughout the day. I wasn't able to sleep well at nights, and just kept dropping off at work (office job).
This eventually led to me quitting because I simply couldn't handle it, and I went to live with a friend who has a hectic lifestyle. My sleep problems were worse because of this, but at that time I'd put it all down to the changes in my life.
One year ago I moved home and found some permanent accommodation where I thought that, at last, I would get back into a normal routine, but in fact the opposite happened and life has got worse for me. I now think I've been ill a lot longer than I realised.
Over the last year, my sleep problems remained and I started to get pain in my eyes. This came and went but in the last 6 months things have got unbearable. I suddenly find it hard to tolerate people, or random events, or paperwork.
Say I have a set schedule for today and a minor random event occurs (eg: Neighbour asks for help changing light bulb). I'm able to accomplish that event, but then my entire schedule is thrown into confusion and it can take days to get back on track.
On top of that, I wake up every morning in a state of utter confusion and my head feels as if it's been beaten in my sleep.
As the day goes on it goes, but has started getting later and later in the day before going. Once it's gone, it's like it never happened and I can find it difficult to even remember what I'd just been through.
In the last two months, it's got to the stage where I have pain in my eyes (one more so than the other) and through my head to my neck, usually one side of my neck but later in the day the whole neck is in pain. (Feels like it's burning)
Also, in the past week, this eye pain now swaps, i.e usually the left eye is most painful but can now start in the right then later move to the left.
My hands and feet tingle like crazy, with lesser effects in the arms and legs, I get all kinds of internal twitches in random places, and often find that I need to talk slowly and carefully to ensure I say what I'm thinking.
I have an all day feeling of 'being unwell' but not sure how to describe that, it's as if everything I do is an extreme effort.
The worse of it is the utter confusion and inability to understand things that deviate from expectations, and the feeling of having been beaten coupled with the eye and neck pains.
I've recently started feeling completely hopeless, almost depressed at not being able to do things, especially those things I normally love doing.
Registering with a doctor became a monumental task for me, as silly as it seems. The problem being that I only thought to register when I felt really bad, then found out I need to register, see a nurse two weeks down the line, then make an appointment to see a doctor. I couldn't understand how to see one right away. Keeping to an appointment two weeks away was extremely difficult due to memory problems and my state of confusion. Eventually I went to my old doctor who sent me for blood tests but will not see me again, will only send results to new doc. Now it will be at least another week before I get to see my new doctor.
In the meantime, I feel totally lost, helpless, 'small', anxious, and in total despair.
Browsing the internet, I came across chronic fatigue syndrome/ME, Fybromyalgia and MS. Really not sure of anything but hoping for an opinion from others who may relate to my symptoms.
I forgot to mention random numbness of hands, sometimes arms, and the feeling that part of my face is paralysed. (It's not but feels as if it coated in glue, or inflexible).
Your opinions will be a lot more valuable to me than you may realise, especially as no one around me can get the slightest idea of what I'm going through.
Thanks in advance.

[jimmylegs]

hello and welcome! it certainly sounds like you have something neurological going on, but it's impossible to say whether or not your situation is ms, or something else.
where were you traveling while you were away? is it possible you've picked something up while overseas?
can you go to an emergency room or a walk-in clinic if you need to, while waiting for your appointment?
what kind of things have you not been able to do, that you normally love doing?
how have you been doing at taking care of yourself health-wise, while you've been feeling low? doesn't sound like you'd necessarily have the energy for a healthful diet.. what is your day to day routine like?

[yvonne4248]

Wow, it sound like you are in an awful way and waiting for medical help must be very hard. You have a collection of symptoms that could be related to lots of causes, you really need to see the doctor before you can sure. Pain, fatigue, tingling, numbness and confusion are often caused by things outside the brain as well as inside. Hopefully you will end up with something like a thyroid disorder which is easily fixed.

[oracleseer]

Hi Jimmylegs, thanks for your reply. I travelled quite a bit but had no health problems while away. In contrast, I'd had problems before I went away, especially with my back, depression for a while and a strange problem where I could be walking somewhere quite effortlessly, then suddenly one leg would feel like it was made of cement. When I went abroad, I had no problems at all.
When I came back, I was ok for about a month, then I got an infection...can't remember now if it was throat or chest. This is when the tiredness started, and I got the same infection three times in 3 months. That seemed to be the beginning of it.
I did go to an emergency doctor, but he made me feel quite silly. He simply told me he can't give me sleeping tablets and that I need to see a doctor. I hadn't asked for sleeping tablets, I was in a terrible state of confusion at the time. I went to register with a doctor, they told me I needed to see a nurse, so I asked to see a nurse, they told me to wait two weeks and after seeing the nurse I could book an appointment to see a doctor, which would probably take another two weeks. This led to complete despair and kicked in my ibs (which I've suffered with for years). This in turn caused anxiety and I was able to do anything for several weeks, but finally managed to write to my previous doctor who agreed to see me. She didn't really understand how this confusion makes everything difficult.
Basically, everything is an enormous task for me now. At first the immense tiredness made it impossible to do simple household chores and my place got into a terrible mess. It took about 3 months of doing things bit by bit to get sorted out. Until this started I was doing a lot of web development work, mainly as a hobby, but it was so absorbing and I loved it. Suddenly, I can't focus on it anymore and all my websites and projects are at a standstill.
I've survived on microwave meals becuause it's easy, but I've eaten sufficiently and added fruits and veg and taken supplements.
My day to day routine is nothing short of hell. Usually I get up at around 6 or 7 am and (recently) have been fine, in top form with only slight neck ache until around 10 when the eye and neck ache get worse and tiredness overtakes me. Then I sleep for a couple of hours and wake up feeling beaten around the head again. (Just woke up now and have also got a high pitched whistle in my head).
My routine does vary depending on which order things go wrong, but it's always a variation of that described above.
At first, it was wearing off around 11am then it was if I had just come out of a dream and I could hardly remember what was wrong with me, but it now seems to go on for most of the day, sometimes wearing off around 11.30 at night.

Thanks Yvonne, just noticed your comment. This difficulty in seeing a doctor has really made things worse, but no amount of reasoning with anyone leads them to understand what I'm going through.

[jimmylegs]

hi again. ok the back story re your depression, back troubles (what were those specifically? musculoskeletal pain?) IBS and chronic infection, plus the issues with fatigue as well as a likely nutrient-sparse diet, all helps fill in the picture nicely.

may i inquire very roughly/generally where you traveled to, and if you were eating to manage IBS issues throughout those years?

glad to hear you haven't been going hungry. nonetheless there will quite certainly be a LOT you can take action on while you sort things out with the doc.

could i ask you to post a link to whatever supplement you've been taking, and whether you use it daily or more sporadically? what do you normally take in for fluids daily?
i ask because there is a very short list of key nutrients that are often insufficient in diet and are also implicated in ms, fibro, and CFS, as well as in depression, IBS, infection, fatigue, musculoskeletal pain, eye health, cognitive function, insomnia and neuropathy.

one very basic step you could take would be to ensure you are meeting basic dietary requirements. it's common knowledge that they're often NOT met and so we see people dealing with a lot of nonsense needlessly, day to day.

[oracleseer]

Hi Jimmylegs, thanks again for your response. I should point out that the back troubles I suffered were around 8 years ago. This was sciatica and was extremely painful, and the only comfortable position was standing up. I went through several treatments, osteopathy, physiotherapy, acupuncture, Chinese herbal, but nothing helped. Then I had three 15 minute sessions with a chiropractitioner, and it all disappeared. Shortly after, I went abroad traveling around Europe but spent the most time in Spain, Romania and Serbia. In all that time I had no illnesses at all, no backache, no ibs, nothing.
Supplements I take are multivitamins, but also make sure I get some fresh fruit every day. I've taken to eating marmite now to ensure i get sufficient b vits. Basically nothing makes me feel better.
I do drink a lot of coffee, but always have done, I have about 8 coffees a day but have been doing so for around 20 years or more (and I take 3 sugars with each....yes i know, not good) I have increased my water intake drinking at least two glasses per day...something I never used to do.
There are so many things that I haven't yet mentioned, simply because I don't remember them until they come back again, such as right now I've got the fogginess again, it's as if everything is a blur. Normally it would take forever to write the posts I've made today on this forum, but I seem to be managing ok today, possibly because of being able to communicate my problems.
The fatigue....well at first it was that one moment I was wide awake, the next minute in the middle of a conversation, I simply dropped off. Then it started affecting my work, about midday my eyes would get so heavy and i'd struggle to keep them open, eventually having no choice but to sleep. Now, I feel the tiredness coming on for an hour or so before needing to sleep, and it's like my brain is shutting everything down so that it can rest. I'm getting more and more distressed because again I had to give up work several months ago, and I can't see an end to this. I cannot go through the rest of my life without work or purpose, yet I cannot get the enthusiasm to do anything.
I must admit that it's very calming to read responses if only because I feel i'm being listened to at last, it's been so difficult suffering in silence, much appreciate the time you take to respond.

[jimmylegs]

no problem

interesting.. sciatica shares an inflammatory aspect with many other chronic illnesses including ms.

have you heard of IF ratings?: http://inflammationfactor.com/look-up-if-ratings/

one thing you could consider, might be to review the potential contribution your diet might be making to systemic inflammation. as a first step, it's a pretty easy one.

overall, the point is not to avoid a healthful food choice just because it has a negative score. rather, to balance the pro-inflammatory choices out with high scoring anti-inflammatory selections.
so, when you're not feeling well, you aim for a daily overall score of +100. if you feel great, you aim for +50.
(for perspective, the sugar in your coffees puts you in the hole by about -480 per day. also, fresh fruits vary widely .. a banana would be -40 while a serving of strawberries is more like +15).

interesting that you had no health issues while travelling. would you say that your daily diet, fluid and activity levels were better, worse, or identical while you were away from home? either way, good to hear you've increased water intake.

do you have a link to your specific multivitamin? i am curious whether the ingredients approach the total recommended daily amounts for illness prevention. i'm not surprised that supplements you've tried to date haven't worked... multivitamins are for healthy people. they don't usually pack enough punch to act as a therapy for illness.

[oracleseer]

Apologies for not responding sooner, currently going through a bad one. Just to acknowledge your response, thanks, will respond asap.