Hi All
So glad that I have found this forum its been so useful…
My husband has been suffering with a lot of symptoms that sound like MS and after 12 months we’ve finally got an appointment at Walton Center for Neurology in November.
What are the processes that we will go through to have some form of diagnosis made, I really dont know what to expect and am desperate to get something done as his condition seems to be deteriorating as time goes by.
Hi there Glad that your husband got a neuro appointment. He will have a clinical exam at his appointment and then may be sent for an MRI, VEPs and a lumbar puncture. This process may take some time, so patience is required. MS is difficult to diagnose so a neuro has to rule out several conditions that emulate MS first. Hth, Teresa xx
Hello, I have my first Neuro appointment in just over a week,and feel apprehensive. Just wanted to send you both my best wishes as me and my partner are getting married 9 days after my appointment so I can imagine how you are feeling as a couple. We just try and keep talking about the things that happen so things don’t build up. The waiting is tense and we often have some eyebrow raising moments along with situations that just make me cry. Sam x
Hi Handbag,
This will give you an idea what to expect http://www.mult-sclerosis.org/diagnosingms.html
George
Hello, and welcome to the site
I wrote a very long reply about first consultations a while back which I’ll copy at the bottom of this. It might help.
The key thing to remember is that it’s the neuro job to try and work out what’s causing your husband’s problems from his history, current symptoms and the results of a clinical exam done on the day (testing reflexes, walking, balance and the like). From this he/she will order tests (e.g. MRI) to see if their “working diagnosis” might be right. Your job (you and your husband) is to provide the information - pretty simple really!
Hopefully it will go very smoothly and you’ll soon get some answers.
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: optic neuritis (recovered); 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.
Thank you everyone for your replies.
Its given me quite a lot to think about and at least we now know what to expect and can spend some time writing up a symptom list and all the questions that we need answers to. Would a ‘symptom diary’ be of use do you think? We have just over a month till we go to the appointment and I’m wondering if this might be helpful for the neurologist?
Sam very best wishes for your upcoming marraige I hope it all goes well for you both xxx
I can completely understand where you are coming from, having a great deal of tearful and upsetting moments here too. It helps that my husband and I are able to talk about some of the problems and very personal and worrying symptoms that are happening.
I too am finding the waiting very tense. It’s taken us over 12 months to get to the point were we will get to see an Neurologist. We’ve been through quite a few other hospital departments before we got to this point. Both of us feel really frustrated and just want to know whats happening. We are both very apprehensive about getting a diagnosis but now are at the point were we are desperate to get some form of treatment to improve his symptoms… taking 2 paracetemol DOES NOT HELP…
It really does help that we’ve found this forum, it means such a lot to know there are so many people here who’ve been there done that and got the t-shirt… and who are willing to share their knowledge and experience and lend us some morral support.
Many thanks xxx
Hi, I attend the Walton centre and it can be a bit daunting. Just a word of warning for your appointment. They are doing a lot of building work at the moment and parking spaces are few, it was bad before but on my last visit 3 weeks ago it was terrible as road works right outside too. If your husband is ok to walk about 500 yards there is a community centre just up from the centre, opposite from the main hospital. They charge £2 to park, I think they are raising money for charity. I hope you get some answers. Chis
Hi Chris
Thanks for the heads up Chris,
I’ll make sure we get there a little ahead of time. A member of our family is driving us so I can get them to drop us at the door and park at the center if need be.
x
Hi Chris
Thanks for the heads up Chris,
I’ll make sure we get there a little ahead of time. A member of our family is driving us so I can get them to drop us at the door and park at the center if need be.
x
Hi all What tablets are given for MS
Alison Penn
the drugs to treat MS are mostly Disease Modifying Treatments.
they are administered via injections, infusion or as a tablet.
i am at present using a tablet, Tecfidera.
was previously self injecting Copaxone.
hope this helps.
your ms nurse is the person to ask.
carole x
Hello
As Carole said, for relapsing remitting MS, disease modifying drugs (DMDs) are designed to reduce the number and severity of relapses.
But there are also many other drugs used to treat symptoms, from neuropathic pain, to fatigue, antidepressants (often used in smaller doses for various symptoms), drugs for spasms and spasticity.
Are you diagnosed? Or starting out the process of being diagnosed? Or just worried about symptoms in yourself or someone else?
If you tell us more about your query, we can be more helpful. You might find it’s a good idea to start a whole new thread relevant to yourself and your situation rather than joining in the end of an old one. To do this, you hit the tab marked New Thread, give it a title and then tell us / ask whatever suits your situation.
Sue
Hi as I am new to this forum and glad that I found it I have nearly all the symptoms and I have ignored them because my doctor when I go to see him just pays me lip service and tells me if I am concerned about my symptoms to go to casualty and that if I need to discuss more than one symptom then I need to book a double appointment as he can only deal with one thing per appointment so if I tell him that the severe burning pains are getting worse and that the feeling of spiders crawling all over my face and arms along with the numbness in hands and feet is so bad I can hardly walk and getting to the surgery is difficult he refuses to do a home visit and I should go to hospital ,What can do or who can I talk to please reply
Hello Hamish
Welcome to the forum. If you see the answer I gave to Alison, you’ll notice the advice I gave her about starting a new thread: ‘You might find it’s a good idea to start a whole new thread relevant to yourself and your situation rather than joining in the end of an old one. To do this, you hit the tab marked New Thread, give it a title and then tell us / ask whatever suits your situation.’
Meanwhile, you say you have ‘nearly all the symptoms’. I presume you mean of MS. I must say that first of all, we all have a variety of symptoms, no two of us experience MS in exactly the same way. So having ‘all the symptoms’ is not necessarily relevant to investigation of MS. Secondly, the way the medical profession look at disease and symptoms is not to start with a diagnosis and fit the symptoms into that. Instead they look at a patients symptoms and decide what might be the cause, ie whether it’s neurological or fits into another speciality. If they think it’s neurological, then they’ll look to see what the symptoms might mean.
The other thing you should consider is that there are many other diagnoses that share symptoms with MS. So while your symptoms might be caused by MS, the chances are they don’t.
However, the way you could proceed from your current situation is by thinking back as far as you can, write down rough dates when you started to experience a given symptom, what happened, how long it lasted and whether it improved or not. A sort of timeline or basic diary. Then simplify it. Ask for a double appointment at your GPs, briefly explain what has happened and when. Don’t tell your doctor what you think it is, but ask for a referral to a neurologist or another specialist if that is what your GP thinks it’s more relevant.
Obviously if you are experiencing severe pain, then do go to A&E.
Best of luck.
Sue
Hi Hamish
AE I don’t think could help, this neurological thing and needs to be seen by a neurologist, if the GP won’t put you forward ask another doctor, my surgery has a lot of doctors and if one won’t put me forward I will ask another. Have you been put forward by your GP to see a neurologist they have a long waiting list.
My surgery you can phone up, you can book a phone consultation with the doctor which can help if you can’t get in. I would also think about changing your GP if you are not satisfied with him.
Good luck
Kay