I’m really only looking for some advice, I have not been diagnosed with MS but I am worried that some of the symptoms I have may mean that I might have MS. I have been a diabetic for over half my life and I have complained about abnormal tiredness for years, I have had multiple blood tests done but they have never shown anything, although I have never known what they were testing for. A few years ago I also woke with excruciating pain down my shoulder and arm which I couldn’t move, I was told it was a frozen shoulder and given anti-inflammatorys, but the pain flare up now and again and is quite painful. Also a couple of years ago I was told I had a viral infection which sent my sense of balance off completely, ever since I have got dizziness on and off but was told since my mum developed vertigo at a young age I may too. I also get chronic cluster tension headaches everyday too! I would ignore all of this and out it down to it just being me if it weren’t for the pins and needles I have been getting for over six months now. It started by waking in the middle of the night from the pain of them and then my hands would be very stiff too. I would get spasms down my legs but put this down to maybe dehydration. However the pins and needles are getting worse for no reason, happening everyday and I’ve statred getting shooting pains down my arms and legs from my hip bone which completely stops everything as I can’t move with the pain.
I’m not sure if I’m being paranoid and over reacting or maybe it is something but not MS. The pains don’t last all day though they do come several times a day but they last for around 10 minutes which may not be long enough to be considered serious. I have an appointment with the neurologist next month as I was referred by the doctor and hoping to get an MRI, but any advice people can give me would be greatly appreciated as I’m afraid I’m being stupid and worrying over nothing, but if you think it may be something I want to make sure I get it seen to ASAP.
Hi L, well your problems could be caused by a whole host of things.
Pins and needles and the shooting pains could be MS. It sounds like the shooting pains could be spasms. I know how painful these can be. I am on baclofen for that and it does help.
With your appointment not being too far away, I think you`ll just have to sit tight and see what the neuro says.
it would be a good idea to write a list of your symptoms and dates.
I think Poll’s right in that the best thing to do is sit tight and see what the neurologist says. There are many conditions that can cause MS-like symptoms, so try and keep an open mind - hopefully whatever’s causing your symptoms will be one of those that is easily treated (like a vitamin deficiency).
Here’s a copy of something about first appointments that I sometimes post on the New/Before Diagnosis forum (where you’ll find lots of other people in similar circumstances to yourself).
I hope the appointment goes well and you don’t have too long to wait for 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 both for writing back I really appreciate it! You’re both right, it could be a range of things or in my case they may not find anything like before but I’ve never had an MRI so I’m hoping that may shed some light. I’m noticing the pains more often and my arm went today in work, couldn’t hold a pen properly for a good while but I tried stretching it out for a while and it got a bit better at least.
I’m probably thinking and worrying about it way too much but I haven’t felt right for years there has always been something going wrong with me but I’ve never known what to put it down to, it was only when the doctor said my symptoms would only be caused by something in the brain that I started thinking about it and things made a bit more sense, but I’ll see, it could all be nonsense!
Thank-you again and I’ll right down a list of things before I go, I’ll let you know what happens!