10 Years Since first Neurology Appt. -should I go back?

New diagnosis and before diagnosis
1

Hello everyone,

I was hoping to get some advice…

I’ve been suffering for years with on and off fully body pain primarily back/neck/legs and feet. I’ve also had dysphagia for over 12 years. Recently pins and needles are a nightly occurrence with my arms going completely dead sometimes for several minutes. I’ve begun tripping and have fallen several times. My left arm started a strange buzzing like there is a mobile phone in my arm vibrating. I also feel an internal tremor which causes me to feel very shakey. My husband actually felt the buzzing in my left arm. I’ve had loss of vision on many occassions. At the moment I am in constant muscular pain up and down my back; neck hands and arms. My legs feel like they are filled with lead. I’ve also been experiencing heart palpitations.

Last time I visited a neuro she basically laughed at me when I mentioned the possibility of MS -10 years ago. I am too embarassed to go back to another one to be honest. So I am looking for recommendations based on my symptoms to those of you who have been diagnosed and suffer. Perhaps you could let me know whether or not you think it would be worth another visit?

Any help would be massively appreciated.

Below are a list of my symptoms on and off for over 10 years.

burning pain in left lower leg excruciating to touch-couple of years

buzzing feeling in upper left arm- last two weeks

internal tremors - last six months

loss of feeling; dead arms

tingling in fingertips and balls of feet - daily

pain in feet - daily

pain in hands- on and off

dead arms - feeling like they are filled with lead - couple of weeks now

feeling like I have a dead foot

difficulty swallowing - always, for years

eye twitching - weekly

jaw snapping; when at rest

dizziness

muscle pain

muscle twitching all over; particularly in feet; toes curl under for long periods of time

loss of vision and shooting lights

wrist pain sometimes severe

tripping/falling

dropping things

feeling like I’ve got the flu - regularly/daily during my ‘bad’ periods

pain in shoulders and neck

electric like shock pain in neck when I move my head at times to look at something; not very often.

short term memory not great

Loss of words and mumbo jumbo coming out instead of what I am thinking

All of the symptoms above are excacerbated when I am tired, stressed or over heated

I feel fairly frightened at the moment as I am an active person who does charity work and I work with children who have learning disabilities and I feel sometimes like I am going to collapse.

2

Hi there,

I’m quite new here, so can’t comment on all of your symptoms, but 10 years ago, the neurologist laughed at me when I mentioned I thought I had MS, said I would be dragging a leg behind me if I had, yet here I am now with a 99% diagnosis of RRMS…lesions on my brain and C-spine, with postive LP.

I have visited the GP on and off for the last 24 years with pins & needles, buzzing in my head, constant headaches, cold limbs, dead arms, electric shocks, muscle twitching, loss of balance and coordination…tripping over nothing, legs giving way, walking into doorframes, but my GP just told me it was down to stress and anxiety…I was stressed and anxious, but only because of my symptoms. When I changed GP 10 years ago, he referred me to the neuro and I had an MRI, but nothing showed up. My new GP has been fantastic and very supportive and never hesitated in referring me to the neuro over the years, but that didn’t stop me from feeling like a hypochondriac.

I would definitely say you should visit the neuro again, a different one if possible, although I am still seeing the same one. He now thinks it’s interesting that I thought I had MS all those years ago and took some of this into account when I was diagnosed.

Fizzy x

3

Hello and welcome to the site

Please do go and brave a visit to neurology again. Things have moved on considerably in the last 10 years and I would hope you would get a more sympathetic ear this time.

The first step is to see your GP though.

I’m going to cut and paste a copy of my suggestions for a first neuro appointment. I think a lot of this is probably relevant for a GP appointment too - they are equally as pressed for time so being prepared can’t hurt.

Let us know how it goes.

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.

4

Thanks a mill for the responses ladies (?). Greatly appreciated. Now to find a GP who will listen first without telling me I’m depressed and need drugs…

5

Totally agree with Karen. Your health is at stake here. Be brave and ask your GP for a referral to a specialist consultant. Perhaps if you reveal which area you live in someone might be able to recommend a good consultant you can request to be referred to Hugs Minxx