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A long road to diagnosis

Hi,

Im not really sure where to start with this thread. So i suppose the only way is to tell my story then ask my questions.

About 2 months ago, after what i thought was a normal check up at the opticians, i was sent straight to the eye unit and diagnosed with optic neuritis which has now left the eyesight in one eye severely impaired. After this diagnosis and ignorant of its link to MS i started with other symptoms, dizziness, numbness and severe tingling in my hands and feet, After a visit to my GP it seems i am showing, and probably have been showing signs of MS for a while ( of course which i ignored ) such as bladder problems and fatigue. Very recently I have started with severe tremors which seem to start at my very core and work there way down my arms and legs to my hands and feet. Simple tasks are now a chore, and an uncomfortable one. I am now have my appointment for the neurologist but quite honestly i am terrified of what lies ahead…

Could anybody tell me what to expect when i see my neurologist ?

How is this going to affect my everyday life?

I’m sorry for the questions but i genuinely dont know what the future holds and i am finding it hard to get my head around it all.

Hello and welcome Dax,

The neuro will examine you, test your reflex and watch the way you hold yourself. Nothing to worry about. She will ask about your symptoms, so I suggest you make a list, not to long and putting the worst thing first, just list the things that are really giving you a problem. They will most likely say you must have a MRI scan and nerve conduction tests along with a few others. Some people have to have a Lumber Puncture done, commenly known as a LP, but not always, I didn’t have one done but have SPMS. Even if it came back as negative it doesn’t mean you haven’t got it, some neuro’s want it done and some don’t. Your medical history is very important in helping the dx, so search your mind as to when everything started and what it was, that’s why I say make a list.

So far as it affecting your daily life, everyone with MS has different symptoms, react differently. What I would say is just remember how you feel now and if you are dx with ms, you will still be you. The drugs that are given now are good. I used to get terrible spasms in my head, legs, arms but since taking different drugs it has eased off. Just remember your world won’t come to an end, it maybe different to the one you hoped for but life with ms can be good. Hope this helps and I wish you luck at your appt’.

Janet

x

Hello and welcome :slight_smile:

I’ll copy and paste a thing I did a while ago about first neuro appointments, but please don’t be worried about it - think of it as a team effort: it’s your job to provide the information and the neuro’s job to work out what’s going on. Unfortunately this can take a while, so be prepared for a bit of a long haul - you never know, you might get a pleasant surprise and get some answers sooner than expected.

It sounds like you had never had any weird symptoms before the optic neuritis(?), so at the moment I think the key question is going to be is all since then part of the same thing or have you had multiple attacks of something. The reason this is important is that there are various things that can cause one off attacks of neurological symptoms so, if it is all part of the same attack, this may be the only time that something like this happens to you. If the neuro believes it to be more than one attack, then MS is definitely a possibility, but there are other causes too, some of which are relatively easy to treat (e.g. vitamin B12 deficiency).

For now, I recommend not worrying about the future. If this is a one off attack, your future may not be very different at all to how you imagined. If it is MS, it will no doubt be different, but it might be less different than you think as people with MS can still do all sorts of things. There is also no reason that life can’t be long, happy and fulfilling - MS is not something that anyone would ask for, but it is NOT the end of the world.

I hope the neuro appointment goes well.

Karen x

These are the things that I think help at a first consultation:

No.1: Be prepared! (It’s always best to have something and not need it than need it and not have it!)

  • Be able to tell the neuro your medical history, any neurological illnesses in your family (if asked) and your symptoms in a succinct, objective manner. Prepare a list / aide memoire to help you. Do not prepare lists with loads of details over loads of pages: the neuro will most likely only want a topline summary / headlines. If they want more info, they’ll ask. A good list will be chronological and focus on the main symptoms. For example, April-May 2009 (recovered): optic neuritis; September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2012 (ongoing): terrible fatigue, deterioration in walking, some cognitive difficulties. If this is the first time this kind of thing has happened to you, then stick to a simple explanation – when it started, what the main symptoms have been and how they progressed, if anything has gotten better since. For example, March 2012: woke with tingling in legs. Developed to legs, torso and back over 2 week period. April: extreme fatigue; tingling areas now buzzing, itching and hypersensitive too. Now: all of the above plus blurry eyesight.

  • Take a (short) list of questions if you have any.

  • Take a list of symptoms that you are struggling with so the neuro can advise re meds or therapy.

No.2: Do not hand over lists unless you really can’t talk through things yourself. If you do hand something over, do not speak until the neuro has finished reading it (or asks you a question - once you’ve answered it, be quiet again if there’s more to read). If you are planning on handing anything over, keep a copy for yourself.

No.3: Be honest. Do not exaggerate and do not play things down.

No.4: Take someone with you if you can. It is really helpful to have another pair of eyes and ears there so there’s a better chance of remembering what happened and what was said. The other person can also help to jog your memory if needed.

No.5: If the neuro’s taking notes of what you’re saying, give him enough time to keep up and get things written down properly.

There really is nothing to be concerned about. The goal of an initial consultation is for the neuro to work out what the most feasible explanations are for your symptoms and to order suitable tests. To do that, he/she needs to know your history and the results of a clinical exam. The only bit that you can help with is the history. So that’s your contribution: to provide the information that the neuro needs. This isn’t too hard - after all, it’s all about you! A list / aide memoire can help to keep you from waffling or missing out something important though.

Hi,

Thank you so much for the insight and advice you have given.

I have had symptoms before the latest problems, and still have ongoing issues, but being a typical man i battled through them or simply shrugged them off and told myself everything was okay. In hindsight I would have seen my GP much sooner. I have had various blood tests, the first to rule out other viral and illnesses that could cause the neuritis, and the latest, to my GP’s credit, tests for various things including vitamin B deficiency, trying to cut out tests my neurologists might do. All these have come back negative.

I now feel happier or more at ease with any outcomes, its just the not knowing !!

But i am now compiling a thorough… short but precise list of my symptoms for my Neurologists.

Once again…THANK YOU !