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Hey, well at least it wasn't a stroke...........

Hi Everybody

I’m new here and I am only writing here as I feel really low and pretty bored to be honest at the moment. I have been reading over some of the forum posts for the last few days. The reason that I am here is because of some internet health research and good old Doctor Google.

My story starts a few weeks ago, I woke up in the morning with what I can only describe as a numb arm/ hand. At the time I guessed that I had slept awkwardly on my arm and that soon it would wake up. It didn’t wake up, in fact it got worse. Later that day my whole arm went completly numb, it felt as though it was wet and at times felt a little tingly. The next day things got really bad, my whole chest area started to go numb and I had no feeling what so ever in the affected regions. I was unable to hold a pen or feed myself with a fork. I called the doctor but was unable to get an appointment so went ot the local minor injury unit, and waited there for four hours, before being told to go back to my GP. (All in all this episode lasted about four weeks.)

I went to the GP and he instantly referred me to the local stroke /TIA clinic at the local hospital suspecting a stroke. (I’m 39 by the way) I was unable to use my fingers to touch an object which was presented to me. I went to the clinic, they carried out various tests and decided that I did not have a stroke, but the Doctor I saw decided to send me for a spine and head MRI. I only had to wait for two weeks before the appointment came through and I had my MRI.

To cut a long story short, I went back to the TIA clinic last week for the results of my MRI. Hopeing for the best I thought that they would say possible trapped nerve, nothing showed up on the MRI off you go.

What he did say is a little blurry in my head, he said that he was sorry to say that the results showed that I have some lesions to my brain and also one to my cervical spine ( I think he said that, I was pretty shell shocked and could only think of tumours for some reason). My next port of call is for me to be referred back to my GP where it will be recommended for me to be referred to a neuro doctor.

So I sit here waiting for an appointment to come through.

Thinking about it, all my troubles started about five years ago when I used to get a really funny feeling in my lower spine and legs when I used to look down at the floor, it wasn’t electric shocks, more like a pulling sensation. I went to my GP then who looked at me and pretty much laughed. I returned a few times to see him with different issues like burning sensations in my legs and real bad stiffness in my back. I was refered then for an MRI of my spine and a degenerative disc was blamed for the symptons I was getting. It was basically a this is what you got, get on with it type diagnosis.

Over the years I have had other strange things happen, my mind randomly goes foggy, my back constantly aches (chronically), my legs hurt when I walk and my left eye, although never have lost vision in it, from time to time feels achey, it feels like it wants to close up and now and again things looks blurry through it. I have had an eye test recently and I was told I had no issues with my eyes. I had a stint (and now and again still do) of not being able to have a pee straight away, I can stand there for a couple of minutes sometimes before something happens. My right leg is currently achey and feels really hot, sometimes the heat radiates ll over my body and I get tingling in my fingers and toes.

Fortunately I still have a job, wife and am pretty mobile still. I guess that this must be limbo land which I am in at the moment untill I get a definate diagnosis. I really hope that all of these things are in my head and I can go back to living a normal life again.

Sorry for the long post, but heck I was bored and think i’ve come to the end of the internet.

Because the MRI showed lesions on my brain and spine, does it look likely that I have MS?

Hi There! Welcome to the forum and unfortunately yes welcome to limboland!

I think you know the answer to your last question - the symptoms you describe are of course typical for MS and lesions on the spine and brain are also indicative of MS - BUT they have to be in the right places and they have to have occured at two separate times etc etc etc.

Are you waiting for an appointment to be made with your GP? If so I would get that sorted asap as the wait for a neuro could be a very long one!

In the meantime stop googling and rely more on this forum - there are lots of caring & knowledgeable people on here who are or have gone through the same as you and can offer the support you need while you wait! xxjenxx

Hi There! Welcome to the forum and unfortunately yes welcome to limboland!

I think you know the answer to your last question - the symptoms you describe are of course typical for MS and lesions on the spine and brain are also indicative of MS - BUT they have to be in the right places and they have to have occured at two separate times etc etc etc.

Are you waiting for an appointment to be made with your GP? If so I would get that sorted asap as the wait for a neuro could be a very long one!

In the meantime stop googling and rely more on this forum - there are lots of caring & knowledgeable people on here who are or have gone through the same as you and can offer the support you need while you wait! xxjenxx

Hi There! Welcome to the forum and unfortunately yes welcome to limboland!

I think you know the answer to your last question - the symptoms you describe are of course typical for MS and lesions on the spine and brain are also indicative of MS - BUT they have to be in the right places and they have to have occured at two separate times etc etc etc.

Are you waiting for an appointment to be made with your GP? If so I would get that sorted asap as the wait for a neuro could be a very long one!

In the meantime stop googling and rely more on this forum - there are lots of caring & knowledgeable people on here who are or have gone through the same as you and can offer the support you need while you wait! xxjenxx

Oops! No idea why I posted 3 times!!!

Hi. Completely agree with Kizzydane. Keep away from Google at present. By the way, welcome to Limboland. You’re not completely in control of what’s going on and there’s the possibility of information overload- none of which is particularly helpful. Forum users have been there, seen it and have the tee-shirt, so until you can completely control the car, don’t get in! I also agree that your past medical history, from what you have described does suggest a positive MS Diagnosis. That said, until you have been given a definite diagnosis by a Neuro Consultant, it remains just that,theory! I received a definitive diagnosis of RR MS in June and whilst I was a little shocked, I was not surprised. The thing is, it explained symptoms and ailments that had befallen me in past years. I was a very fit, endurance athlete, but on the few occasions that I needed to see the GP, it was only for pretty significant ailments; Acute Labrynthitis (inflammation of the middle ear)- caused severe vertigo and nausea; A Urinary Tract Infection (UTI) which did not clear up after a dose of several different high strength antibiotics. Was actually admitted to hospital for a Cytoscopy (an investigation of the urinary tract). Finally in June, days before i was due to take part in a Half Marathon, I too thought I had suffered a Stroke. Now that, really shocked me. How outrageous? I was extremely fit, have been a vegetarian all my life and my body is a temple, so I am a little too anal when it comes to my diet. Everybody, including me was shocked at that. Initial diagnosis at the hospital was that I too had suffered a TIA. However, it now transpires that I was actually experiencing a relapse. After all that, everything made sense. All the pieces of the jigsaw fitted together. I wasn’t going mad, I didn’t have clogged arteries through lack of excercise and poor diet- I had Multiple Sclerosis! Finally, hopefully, your diagnosis will be negative, but, if it isn’t, this should be your first port of call. Best of luck xx

Thanks for the replies, I must stop googling for answers as it’s just putting me into a dark place where I really can’t and won’t let it put me there.

I am currently waiting for my local doctors surgery to hear something from the hospital who gave me the MRI results last week. It’s two different hospital trusts so I haven’t got a clue who knows what, where my next appointment will be, either the doctors or with a neuro specialist! I have had private medical cover for the last twenty years (never used it so far) so might try to go privately. Just need to speak to someone to explain properly what is going on and get my doctors referral.

I unfortunatley had brain fog when I was told my results and cannot recall what was actually said. I wish I asked for a copy of my results but thought I would be in and out in a couple of minutes.

Your replies and comments are very comforting to recieve. Thanks

Had my appointment letter through today for two weeks time. It’s not what I expected though, it’s for an appointment with the neurology service at a local MS centre. From what I can read It’s not to see a specific doctor just a member of the team. They want to know my current list of medication.

Is this a normal step in the line of diagnosis or is it possible that have my scans been looked at by a neurolgists and a conclusion has already been made? I fear that I’m going to go there and be diagnosed with a progressive form of MS and be told that there is nothing they can do. I do hope that I get the all clear, but somehow can’t see this happening.

The good thing is, apart from my current back ache, tired when i’m walking, burning feeling in my right leg, my right knee feeling numb and tingling sensations in my left foot and toes, things are going well at the moment. My right arm and hand has returned to 90% normality with only slight tingles now and then.

I hope that this dark cloud passes quickly and the sunshine hurrys up and returns to this neck of the woods.

Hi number08 Just read your post. Sorry to hear of your worrying symptoms. I’ve not heard of a neurologist looking through scans then making a diagnosis without the patient’s involvement but my reply should bump you up the board in case anyone has had a familiar experience. My MRI showed 3 brain lesions, 1 spinal cord lesion. My symptoms are fairly similar to yours. Mine started in Easter and have slowly got better, although it feels more like 2 steps forward and 1 back at times. The sensation you said you got when lowering your head sounds similar to l’hermittes, which I’ve experienced. I was told the spinal lesion was likely to be responsible for this. I’m still waiting for my symptoms to go and I think that’s the frustrating part; only time will let you know the nature of your ms, if that is what you have. I think it’s best to have an open mind until you’ve had your dx. I’m learning to be patient, focus on what’s getting better & not what isn’t, and most importantly never visit Dr Google! When I first got symptoms, I only ever seemed to encounter doom & gloom and I think there’s a lot of scaremongering out there. If you do find the Internet beckoning, look up all the good stuff that’s going on around ms: healthy diet, vitamin D, latest research etc,. Good luck for you appointment - hope it goes well for you Jane xx

Hey - I’m in limboland too!!

First off… I was a bit google happy… a little is healthy to understand whats happening but it can quickly depress. I agree with Jane, focus on what you CAN do right now. For me, I’m 2 weeks in to a new way of eating and supplements and the difference is unreal, I feel like a new person. Finally feel that there is a light at the end of the fatigue tunnel! It really does take focus though, but diagnosis or not, I intend to eat like this for good.

http://www.youtube.com/watch?v=KLjgBLwH3Wc in case it is of interest. If so - happy to share more with you.

Also… find a way of getting this out! I have started a blog, typically thats not me, I feel a little exposed, but slowly the positive is increasing with it, and its making me feel good. You can say things that you cant say to people you love.

Hope that helps.

Sus