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diagnosis issues

Hi

I have just joined the forum to try and get some idea of how to confirm diagnosis. Over the last 12 months I have experienced the following symptoms which have been gradually getting worse.

Fatigue, reduction in strength, muscle spasms which are sometimes severe, lack of breath, shuddering sensation, constant need to use the toilet, involuntary movements, visual twitching of muscles, followed by spasms, eyesight strain and on many occasions, confusion and sometimes lack of awareness.

I have had blood tests and an MRI which have come back clear and at this stage my consultant has said that I have myclonus and until my symptoms get worse, he won’t be able to firm a clear diagnosis.

My wife is a nurse and is aware that MS does not always show in the first MRI, is this correct ? are my symptoms typical of the early stages of MS ? I just want to find out once and for all.

Advice would be much appreciated

Thanks

Hi Darren , it could be Ms . But it could be something else as Ms shares symptoms with a lot of conditions. Unfortunately you will have to have another scan at somepoint . I would discuss this with GP

Hi Darren

I know how you feel I have had issues for 6 months getting worse, Lhermittes, tingling, burning and leg pains, clear MRIs and lumbar puncture. I’ve had one neuro say can’t rrule it out and another say it’s not ma

have you had an LP? Many have that if their mri are clear? Also other tests like b12, esr, crp maybe even lymes if needed

Hi

Thanks for the replies.

I’ve had all the other tests, with exception to LP which i assume my consultant may ask for when i next see him.

So far just a diagnosis of myoclonus which as we know is just a symptom of an underlying problem. My wife is making a daily diary of symptoms and filming the issues when she’s able to.

The spasms are quite severe and always start with an electric pulse going into various muscles, followed by strong pulses in the body. A bit like touching a live cable if that makes sense.

This in then followed by headaches and nausea

Nightmare and getting worse with the confusion, lack of energy etc

Has functional neurological disorder been mentioned ? You can get functional jerks etc . It’s good you are documentinf symptoms etc . I think if it is Ms it will eventually show up in scans .

Highandlow might be on to something, it’s not a diagnksis people like but IVE been told something very similar today, either that or somatization disorder as all tests are clear so far

it may turn into something and your LP may help to diagnose what it is, have you had bloods to rule out other things like vitamins or more obscure neuro problems

Yep, had all the blood tests, including Lymes.

I guess its a case of wait and see then is it ?

Something is wrong though and I do tick all the boxes for MS, with exception to the eyesight thing which as yet isn’t causing me problems.

Hi Darren , it is . I would suggest that you look up functional neurological disorder . You have said your eyes are not playing up ‘yet’. But you may not have Ms , so eye probs may never show .

People who are 'in the know ’ can be highly susceptible to functional neuro symptoms said a neurologist I saw . As your wife is in the know, you may be too. I read that doctors / medical students are more likely to think benign twitching is from motor neurones disease , which in turn leads to more twitching !!!

While you wait , I suggest you try to place less emphasis on your symptoms and see what happens . If it has an organic cause , you will find it

Best of luck

p.s im a psychology grad and for some reason psycho -somatic illness interests me

Hi there!

I know what it`s like waiting and wondering what the chuff is wrong!

I`ve had my disabling problems for going on 17 years now.

I wont bore you with too much detail, but here`s a potted history of my stuff.

I was 45, otherwise fit and healthy when my left leg felt heavy, foot drop followed and lots and lots of falls occurred.

Arm and leg spasms hurt like hell. L`hermitte type sensations. Fatigue and bowel/bladder problems.

I had 4 MRIs, 2 LPs, 2 EMGs, a VEP and gallons of blood tests showed no proof of ANYTHING!

But because I presented as PPMS, I was diagnosed with it for many years.

Apart from mobility, nothing else worsened…never had eye problems.

In 2010 MS was dismissed and HSP replaced it. This stands for hereditary spastic paraplegia.

BUT we know of no family with similar problems.

MS was tested for later, still nowt!

My current diagnosis is ISP…idiopathic spastic paraplegia.

Minefield innit?

luv Pollx