Hi im new to the forum and havent had chance to look through on here yet .Im 29 years old and for the last 3 months have been experiencing alot of strange sensations.It started in my legs ,a tingling like pins and needles that came and went throughout the day .It then started in my arms and then my back .I ignored it and thought it might just be stress or something .Woke one sunday morning and it was in my face and it felt sort of numb ,so i went to the hospital has some strength tests and a blood test.They didnt know what it was and i was sent home saying, come back if it gets worse .4 weeks later it was worse ,it feels like its mainly in my back now but it is in my legs ,arms and face as well .It feels so sensitive to touch and i sort of feel like my skin is buzzing! It feels like very strong pins and needles and kind of like thing are crawling under my skin .My doctor has refered me to a neuroligist ,my appointment is in 2 weeks.She also prescribed amitriptilin.Yesterday i have started feeling like its itching where the pins and needles are .It drove me mad yesterday .I took some piriton and it helped just the itching slightly.My eyesight feels very fuzzy and im very tired (but i know that can be many things).Im hoping its nothing serious ,im sure its not .Probably stress or maybe a deficiency in something .Ms does not run in my family .I hate even going to the doctors but felt that i needed to go .Sorry abouth the long first post from Sam
Welcome to limbo land.
I am afraid you will find many people on here in a similar position to you. diagnosis(dx) is usually a long drawn out process of excluding other possible causes for your symptoms…and that are treatable.
Most of us know what you are experiencing symptom wise and can offer help and advice on symptom management while you are going through tests. It is possible that they are caused by one of the many ms mimics so try not to worry too much at this early stage.
U have a neuro referral which is good, and I would suggest you write a concise list if symptoms and a time frame of when they happened and how long for.
If you look back through old posts Rizzo has often explained the best way to do your info to take to the neuro.
Sorry you have had to join the limbo club but ask away and someone will help you.
All I ask is can you break up your writing into small sections so those of us with bad sight can read it.
Yes will break writing into small sections in future sorry about that . Thanks for your answer Pip . I will have a read through some older posts . That’s a good idea to write everything down , as I often forget what I’m saying half way through a sentence lol What normally happens at your first neuro appointment ? ( well hoping it will be my one and only app with one ) Sam
Hi Sam, and welcome
There are actually a whole load of things that could be causing your symptoms, so while they do happen in MS, they may due to something very simple to fix (e.g. a vitamin deficiency)! So keep thinking positive
As far as what happens at the neuro appointment, the key things are finding out about your symptoms and doing a clinical exam. The exam involves things like watching you walk, looking in your eyes and having your reflexes tests. It’s nothing to be concerned about.
Pip suggested having a look through for some of my old posts. In a moment of atypical organisation(!), I actually copied one of these onto my laptop, so I’ll copy it below for you. [I’ve edited it a bit to account for a first attack too, which is more relevant for yourself.]
Before I do that, I wanted to add that you should go and see an optician about your eyes - it may be an important clue.
Good luck! Let us know how you get on!
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 2008: optic neuritis (recovered); January-March 2009: numbness from waist down (recovered, but residual problems in right leg); September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2011 (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 for your symptoms are, 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.
This is only my experience…and neuros are a strange breed so alot depends on your neuro and whats on your gp letter.
Mine has asked what has been happening to get to the stage of referral…he/she may be interested and ask questions or brush it all aside …I have had both encounters.
He then did balance tests which I was rubbish at and shocked myself. He tested reflexs and leg strength,and I have had optic neuritis twice so the both did follow the finger tests and chart tests. I think they check eyes with everyone though to see if they physically move correctly . They will also order a wide array of blood tests to rule out the treatable conditions that cause the same symptoms, if your gp hasnt already done them.
The result of my first consultation was an MRI scan and visual evoked potential test. The VEP tests measure how quickly messages get through.Its a case of sitting infront of a tv screen with wires on your head looking at what essentially is a draughts board but the images move while you have to remain focussed on a dot on the screen.
I had ON at the time so I could hardly see the dot let alone focus on it. The woman doing it was sitting behind and kept saying Pip your not concentrating on the dot I can tell !!!
It was then several months before I was seen again and was told it was clinically isolated syndrome and to go away and forget it unless something else happened in the future…well the rest is history.
I didnt have a lumbar puncture but some people have to have them to firm up the diagnosis.
Whatever happens it is a long way to dx so Im sorry but several appts and many tests are likely
Thanks Pip and thanks Karen you have both really helped .
Im sure its not ms, but ive really had enough of this feeling now, especially as its getting more intense.I am going to book an opticians appointment ,get these eyes looked at as well.