Under diagnosis

New diagnosis and before diagnosis
1

Hey all,

Can anyone help?

Over the last year Ive had some bizzare syptoms that inatially were detemined as a virus by my GP, until the third time which I was quite firm and said this is not the same virus.

Ive always suffered chronic fatigue and sleep problems since I had measles when I was 3, Ive always suffered on and off with my health due to a low immune system (when I get ill I get proper ill!!)

Just over 3 years ago I suffered a car accident which lead to a difficult 18 months ( job loss, court case, loss of both grandparents, financial stress and a dip in mental health)

Life began to pick up and health and life were great.

Last year I went to florida for 2 weeks with the kids had a great time and came back feeling ok.

I month later I started to suffer with chronic fatigue,flu like symptom, pins and needles and various aura sensations to include migraines. Doctor said it was a virus. This lasted around 6 weeks.

Around 3 months later Chronic fatigue, flu like symptoms, pins and needles and now muscle tiredness and joint pains and migraines, Felt like I had run a marathon twice over. Doctors diagnosis a virus. Again lasted about 6 weeks.

Around 3 months later, waking up still tired, and symptoms of the above but very agressive. Various bloods done doc refers to nuerologist but says its just stress. How ever in the letter she asks for the demyelination to be checked?

Appointment with neurologist 2 weeks ago does bloods for various myalgia and autoimune diseases and orders a cat scan gives my sleeping tablets.

Last week: Flu like sypmtoms on the wednesday, gone by the friday, finding no sensation when I go for a wee and its like niagra falls when I go, manager at work finds im slow at transfering customer info from aplication to computer, the following Tuesday I loose my vision in one eye, have the aura but no migraine, suffer with my joints of my thy to hip late at night, suffer through the night with pain. Wednesday morning, get out of bed and my legs are not functioning, Im in pain and can not walk normaly,I walk like a robot and have to really concentrate on what Im doing.

Gp sends me to hospital, I talk to the junior consultant for an hour, she does some tests and after an open and honest talk she mentions MS as a possibility. An hour later a consultant comes in, decides I have fractured my back because its lower back pain?? I didnt mention that?? sends me for an xray and admits me. ( he did mutter arthritis but nothing more was said) They then decide to focus on my headaches and treat me for that and sent me home after my CT scan was clear and referred me back to my neurologist. My walking resumed to near normal after 48 hours they didnt seem concerned about it at all apart from the junior doctor who they did not listen too?!?! Ive woke up this morning still aching, still tired and thoroughly peed off with the whole situation.

Im considering seeing a private neurologist and getting a second opinion, not bothered about the cost just want to feel well again… any thoughts people please?

Kind regards Dee

2

Hi Dee

what an emotional rollercoaster for you Dee. Firstly let me say how sorry I am that you’ve had to deal with so much - life doesn’t half through things at you sometimes.

Some of your symptoms do sound MS like some of them don’t (migraine and aura precipitating with every episode) but I’m not a neuro and MS is the great deciever. Either way this needs investigating properly and it soudns a bit like you’ve been getting some mixed messages from different doctors which probably isn’t helping the situation.

Diagnosing MS is a process of elimination as many conditions can mimic it (vitamin deficiencies, thyroid problems, low iron, arthritis and even migraine just to name a few). There is not one specific test that can confirm MS. The first stage is blood tests to look for some of the things I’m mentioned above. A scan is needed to look for inflammation caused by MS but also to rule out any other things. It should be an MRI brain and spine preferably with contrast (contrast will highlight active inflammation). The neuro may also wish to do a lumber puncture and evoked potentials if he is supecting MS or EMG to look for trapped nerves etc. The neuro themselves should do an examination to test your cranial nerves, reflexes etc

Next question should you go private. I work for the NHS and in all honesty if you’ve got the money for your first consultation it would get you seen quicker particularly if you feel like you’re not getting a straight forward answer with your present doctors. Otherwise you can always ask your GP to refer for a second opinion but it does take a bit longer so depends on what you feel is best. If you go private research your neuro well and make sure he has an NHS and private practice. Most neuro’s will transfer you after the intial consultaion to NHS particualrly if they knwo you’re going to be under investigation for a while. IF this is MS it can be a slow lengthy process and the costs can build up so this is the wisest approach.

Most important at the moment is not to read too many things and try not to panic or stress as they can exhacerbate neuro symptoms. Whether this is MS or not you certainly need some straight forward answers as to whats happening to you and the GP is not placed well to diagnose - you definitely need to see a neurologist who’s willing to listen.

Best of luck

Reemz

X

3

Hi Dee, and welcome to the site

Great advice from Reemz - I just have one thing to add: I think it might be sensible to first see a headache specialist neurologist rather than an MS specialist neurologist. The reason I say this is your migraine with aura.

Migraine can cause neurological symptoms and some of the rarer types can last weeks at a time so it’s possible that everything has migraine at the bottom of it. If you see a headache specialist and migraine is ruled out, then you will be in a much clearer position when you see a different specialist, e.g. I have a feeling that as soon as you mention your headaches, a lot of MS specialists would simply tell you it’s migraine and discharge you without properly investigating other possibilities.

I don’t know if you’re anywhere near London, but if you are, I can recommend a headache specialist neuro based at Charing Cross Hospital (although he probably has clinics elsewhere around London too). I saw him earlier this year and he was absolutely wonderful! (First time in years that a consultant actually LISTENED, plus the letter he sent afterwards was 100% CORRECT!!! Miracle :-))

I hope you get some answers very soon. Keep being firm with that virus-obsessed GP!

Karen x