Newbie awaiting diagnosis

Hi all am a newbie on here, Having been in hosp over Xmas and losing my balance and sudden hearing loss. I was eventually sent for a MRI by ENT( took them weeks) My MRI results show demyelation highly suggestive of MS. I have had many symtoms over the years however mostly dismissed by GPs…Ie…Vertigo,Balance issues,Fatigue , Numb fingers, left arm intence pain lasted 6 months , Spasms, Aches in hips ,Osteo Arthritis in neck , Septic Arthritis, Septasemia etc etc …Dsylexia… Ive an appoint on 22nd with a Nuerologist and hoping will give me some answers. Any advice is welcomed as I dont know what to think anymore and panicking!!! I was being treated by ENT as thought Vestibular and also have Dry eyes, skin told potentially Sjogrens by 2 hosp eye clinics as to which is similar . But assume the spots in my brain arent Sjogrens… Joined here as Mrs Google messes my head

Hi Jane,

Yea, doctor Google is very confusing. The best information on MS is the MS Trust; https://www.mstrust.org.uk/ and the MS Encyclopaedia http://www.mult-sclerosis.org/

All current info is on them. The best description about MS diagnosis and the various tests are Diagnosing Multiple Sclerosis It’s written by a doctor about his MS and actually knows what he is talking about.

Unfortunately, GPs are what’s written on the bottle; general; and may only deal with 7-8 patients with MS their entire career.

Your MRI is the best diagnostic tool and I do suggest you buy a copy; about £10. This is always handy for comparison with later MRIs and especially if you change hospitals; they seem to lose their copy a lot. They cannot refuse you a copy under the Freedom of Information Act.

Good luck

George

Hello…first …welcome…but stop panicking and stop reading Dr Google…he hasnt had proper training!

I know there`s a lot going on with all your different symptoms chuck.

It might be MS, it might not.

Trouble is, so many other conditions mimic MS.

You`re appointment isnt that far away, so let the neuro do his job.

Write a list of symptoms in date order.

Write a list of questions.

Take someone with you, as we can forget what was said, when we are nervous and in a worry.

Let us know how it goes, yeah?

I`m in my 20th year of neuro appointments and still have no definite diagnosis.

But I am an honorary member here, as I was wrongly diagnosed with PPMS for several years!

pollsx

Hi Jane

George and Poll have given you the best answers anyone could. Ignore Dr Google, he’s a crap doctor.

Write notes to take with you to your appointment, include your symptoms over the years and approximate dates.

Chances are, they could diagnose you with CIS (Clinically Isolated Syndrome) initially as to be given a diagnosis of MS you need relapses separated in time as well as multiple lesions.

But if they do diagnose CIS, you can still get some of the DMDs. These may stop any future occurrences.

And of course, you may not be diagnosed with either MS or CIS. It could be something else. Or it may be that more tests are required. If they are continuing to investigate MS, you could be sent for a Lumbar Puncture (where they extract a tiny bit of cerebral spinal fluid from your spine with a needle - https://www.mstrust.org.uk/a-z/lumbar-puncture ) and / or a Visual Evoked Potential test (see https://www.mstrust.org.uk/a-z/evoked-potentials )

At least you’ve not got long to wait.

Sue