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Limbo you said? Yeah, something like that with a dash of madness.

Entry 6

Sunday 17 March 2019

A few weeks back, an accumulation of unexplained symptoms (high sensitivity to light, double vision, difficulty to focus, numbness, loss of control over my hands, nauseas, poor balance, extreme fatigue) led my GP to suspect I have MS. The news took a few hours to sink in. Being French, the initial “MS” did not resonate with me at first. Seeing there was no apparent trigger behind any of my symptoms and no recurrent pattern, my GP first instinct took her to the MS diagnosis. She said to her it was pretty obvious what it was though I needed not to worry for now and await a neurologist opinion. I was confused and having gone through multiple blood tests and a smear to rule out cancer and certain disorders, I had been expecting the worse.

“What does it mean? Am I dying or something?”

“No you are not. People can live fulfilling lives with MS. Research is evolving every day.”

I should have known it is not good when the most comforting thing a doctor has to say to you is “your life is not over yet”.

“Ok. What do you mean research is evolving though – it is not serious, right? I mean, you said I wasn’t dying.”

“Not any more than any of us out here, yes. But the neurologist is the only one who can competently pronounce a diagnosis at this point. No need to go and tell people you have MS yet, OK? No need to worry.”

I did not understand why she was so cautious. She did not explain further what MS was and instead showed me the online NHS page outlining the main MS symptoms. Together we assessed of the ones I had and for how long. I left very much reassured I wasn’t dying and relieved there was, after all, a reasonable diagnostic behind my symptoms. I had considered I might be going crazy. I could live with these symptoms after all; why make such a fuss about it? Did I have the right to complain about them? Was I not just an attention-seeker? The hands paralysis and spams – which is what got me to consult – mostly happened at night (it would wake me up) or at random times; at work, at home, in the tube, etc. I had managed to hide it from everyone I knew and to function normally. Maybe I had dreamt them. Maybe I was overreacting. It was easy to forget about it as there was no left-over pains to begin with (these came later to my greatest joy…). It is only once I got home and saw the grim reaction of my flatmate when I announced “no cancer, though I may have MS”, I understood something was wrong and looked it up.

I am now fully aware of what it is and waiting for my appointment with neuro in… July. Is that sort of delay normal?

Another doctor I had to see while in France for a minor issue with my legs after a hike, also told me it wasn’t good to wait this long for diagnosis and that I should go to the hospital at any sign of symptom so they could give me cortisone. He said failing doing so would likely mean my symptoms would settle and become permanent. Is that real? And if yes, how come the system allows for such time period before on consulting with patients at risk. That’s playing with people’s life…

I read in a post here that “crisis” last only 24 hours and are spaced out of a couple of weeks - is that correct? Mine can sometimes be more recurring than this. Am I more at risk to have the very-not-fun sort of MS?

For so long I just assumed I had nothing and did not even regards most of these things as symptoms at all. They were just how my body functioned and I had no reason to question it.

My family does not do well with sickness. Probably because it scares them. So I couldn’t be ill. Last time I was, they acted as if I did not want to get better. One day I got paralyzed on the wheel, my mother screamed this was a professional car and I better not damage it or I’d pay for it myself. She did not enquire about my emotional or physical state and we never talked about it again. Of course it would be unfair to blame my family for a delayed diagnosis: I am a grown up and my own person and should know better than retrieving to such nihilistic emotional reactions when confronted with something potentially serious. All I know is I did nothing about it mostly because I did not recognized something was wrong. Brought up in a culture of “keep calm and toughen up”, I had learned to live in pain, in discomfort, and assumed that was just life for you, for all of us, and that there were no reasons talking about it.

Currently waiting for my appointment with a neurologist set in July, I live in constant anxiety over the diagnostic to come and have learned of a very new kind of sadness I did not know existed.

I don’t know what’s good or what’s wrong for me anymore. Writing helps. I name things for lack of actual knowledge over what is happening to me, it is easier dealing with that way. Because I can’t say I have MS until having an IRM, I refer to my condition as the “maybe-decease” (yeah I didn’t say I was good at coming up with names tho). At least it is something as supposed to nothing. There’s what I call the “confusion”: a mixture of anxiety and incapacity to focus or visualize thoughts, or simple things, such as the day ahead of me. A subcategory to the state of confusion, for instance, is the “absence”: one, five, ten minutes can go by, a conversation have massively moved on, people jumped into space around me, I don’t know what happened in that lapse of time except I wasn’t truly there (that only happened that drastically once in Africa, where we worked crazy hours in the heat).

“Recklessness” is another one and is hard to cope with: my body stings. I don’t know whether it’s hunger, sleep deprivation, wanting nicotine so badly (trying to quit at the moment), anxiety, another symptom? A nod the size of a fist forms in my chest, under my breast, and it’s like I want to cry but can’t. Not only it is hard to tell what it is, but I can’t stop it. The best to describe that “recklessness”, is a seemingly never-ending state of shock. It is a physical state first inducing an emotional response – and not the way around which tells me it is different from anxiety. It feels as if parcels of my body were continuously quivering and nothing could ease it down. I have no control over it, no understanding of the precise nature of said state; what’s it is made out of, what triggers it; whether it is a symptom or a reaction to my situation as a whole, or something else altogether. It comes and goes when it pleases and I haven’t learned how to foresee the beginnings and ends of it yet. Drinking water helps; writing too (anxiety tends to worsen any sort of symptoms I have, and writing helps stopping my thought spinning out of control). I often crave green vegetables and lack calcium; I am very emotional and my period kicks in every two weeks… I am insomniac… It is more and more difficult to be articulate… Does any of this matter or is of any relevance to my “maybe-decease”?

All I’m told is to not worry. No one can answer these questions yet. I can’t worry and think about it all the time. I can’t freak out. But what else am I supposed to do? It has had a negative effect on my work, too, which requires high level of focus and long hours. Am I just supposed to watch my life go wrong and accept doing nothing about it? Because that’s how the NHS works.

I am at the point where everything has become a symptom and I am going mad.

I have at least admitted to the reality that whatever it is, I have got something. For too many years I have neglected what are today believed to be symptoms of MS. What I retain from this experience is I neglected myself; I did not listen to my body cries for help and care.

Doctors love to say:

“So, you may have MS but you may not, remember we cannot know until you’re properly diagnosed. This could literally be anything.”

(Sure many of us here have heard similar not-so-comforting and certainly not helpful comments from our GPs.)

So I listen. Only few people know about this and they have been great. I dread the day I’ll have to tell my family but have decided to wait for a diagnosis before I do so. I try to be kinder to myself, which is a new concept for me. But I am scared and the uncertainty is getting the best of me. Some other days are OK and some are not.

Someone redirected me to this website and since the only thing I can do is write and hope to get answers and get better at dealing with my symptoms, maybe seeking counsel or just a listening ear from people who have been through a similar experience will ease my pain and sadness. I don’t know anymore. It seems I have lost all certainty I had over life altogether (and I did not have much to begin with).

Thank you for reading.

J x

Hello Jeanne

Blimey, I thought I wrote long posts!! Welcome to the forum. Sorry you’ve had to find your way here.

I have a few points with regard to your situation. First, your GP is not qualified to diagnose MS. In fact, really she shouldn’t have suggested it as there are so many other diagnoses that could be made, many of which are not so bad.

Only a neurologist can diagnose MS. And they will only do this after:

  • Taking a history from you with regard to the symptoms that may, or may not, be connected.
  • Doing a physical exam. This would include testing reflexes, reactions, balance, and several others tests.
  • If s/he thinks there is a neurological problem, they will refer you for tests. These are likely to include an MRI, but also, possibly lumbar puncture, nerve conduction, bloods and evoked potentials. (There could be others, depending on what the neurologist suspects might be wrong.
  • Finally, they should have a follow up appointment with you to discuss their findings. It is at this point that a diagnosis like MS would be possibly made.

You should be aware that there are many, many symptoms related to MS. And a great number of these are also connected to other disorders and diagnoses. So you cannot take a list of symptoms and extrapolate from that a diagnosis of MS. You could find the answer is as simple as a vitamin deficiency.

However, supposing you were ultimately to be diagnosed with MS, since your symptoms have come and gone, it’s likely that you’d fit into the ‘relapsing remitting’ (or RR) category of MS. Relapses are new or recurrent symptoms that last for at least 24 hours. These symptoms can start to recover within a few days or weeks, but can take months to get completely or partially better. Often a person doesn’t realise they are getting better until months have passed. When someone with RRMS has a relapse, they are often offered steroids, either intravenous or tablet form. The steroids are not a cure for MS or the relapse, all they do is help to speed up the remission from that relapse.

If you have an MS relapse and don’t have any steroids, the relapse will have exactly the same outcome as if you had taken the steroids. Therefore, strictly speaking, it’s not necessary to either take steroids, nor is it essential to have a quick diagnosis.

Waiting until July for an appointment with a neurologist does seem like a very long wait though. You could try phoning the hospital and asking the appointments team if there are any sooner appointments available. Or you could see your GP again and ask her to re-refer you as an ‘urgent’ case. Given your extreme anxiety, this might be a good plan.

You asked whether you could be at risk of the worst kind of MS (the ‘very-not-fun sort’). In fact no form of MS is much fun, and yet all the varieties of MS have people with severe ‘highly active’ disease as well as people who manage their symptoms and aren’t too badly affected for years. Many of us fell into the ‘not very affected’ group for years before becoming more seriously affected. I managed to work in a high pressure environment for 10 years after my MS began. So it is possible.

I think you should try and get your neurology appointment brought forward. But while you are waiting, try and manage your anxiety. It won’t help you to worry like mad. What will be, will be and panicking about the future won’t make a scrap of difference.

I hope you do manage to forget the symptoms a little, not worry quite so much about what is causing them, and try to just live in the moment.

Best of luck.

Sue

Hi J What I can say is that a neurologist is the only doctor who can tell you for sure that you have MS. No one else can, not even your GP. He can put you forward to see one but can’t say anything else. Also MS has the same symptoms as many other illnesses and they have to give you lots of tests to rule out the other illnesses first. An appointment with a neurologist can take a long time as they are very busy, and as I said they are very busy and once you have seen one and he thinks that it needs investigating he will book you for some tests eg MRI blood tests and a lumber puncture then he will book another appointment with him again to tell you the results. You can if you want to is phone up your dr and as him to hurry up the appointment as urgent or you can phone his secretary up and ask if you can have a cancellation. MS is one of the autoimmune diseases that you can get, another one is coeliac, it can be as individual as you are meaning it has lots of symptoms and not everyone has the same, similar but not the same. Don’t go on dr Google he is a quack if you must go on look on this site as well of the NHS there is one or too other sites but its enough to send you bonkers reading all of the things. So I am sorry to say that you may be waiting for awhile, it’s a good thing that you haven’t told your family as it would upset them maybe for no reason I haven’t told some of mine and I won’t until the neurologist tells me yes or no. My appointment with the neurologist is for April they sent the appointment in December. On this site there are lots of people who can tell you just about anything you may want to know also they can give you very good advice or information that you may need, one is a symptom diary keep all of your hospital or doctors letters as of now. So welcome to the site J Kay

Not quick enough

why not ask if you can see the neurologist PRIVATELY, most do a private consult. its not as expensive as people think and you get a full THIRTY MINUTES with them. Also like sue said your symptoms could be many things, even Lymes, M.E. fibro, lupus, RA the list is endless. Doctors should not say anything, just refer to specialist. I loved what you wrote i wish i could write like that. Yes see if you can go privately you will see your neuro in a few DAYS. Good luck.

Hi It is a very frustrating time. I too have had m.s. symptoms and feel that I have been going round in circles. After a long wait to see a neurologist , brain scan showing multiple t2 hypertensies. Bloods normal and nerve conduction study normal. Now waiting for the neurologist to get back in touch with me. At no time has any-one explained the brain scan findings to me or the conduction test results. I’ve been ringing my Doctor in sheer frustration as the neurologist has not at any time sent me a single letter about the results of these tests. I’m relying on my own Doctor to keep me informed who has now sent her a letter telling her to see me asap as my symptoms /problems are getting a lot worse by the week. I have no feeling down my right trunk and leg. Head and eye pain numbness in face and skull. Tingling pain and numbness in arms and legs and also having problems walking as my legs go weak after a few minutes and do not want to walk anywhere . I have a long list of problems and just want to get a diagnosis and then get on with the rest of my life. And yes Limbo is a good word to use. Sorry to go on about it but just totally fed up with the waiting. Wilma