Limbo

Hi

So I was told I have MS, but then another Neurologist has questioned my diagnosis.

I have normal MRI but positive lumbar puncture.

I am so confused and no one seems to tell me anything, and I find my neurologist difficult to talk to!

I am not sure at this point if there is a chance I dont have MS or if it is just a case of waiting to for it to show anyone been or in this situation?

Also the positive lumbar puncture could there be another reason for it?

Thanks in advance

Carlean

Hi, This may be of help from the MS Trust website.

Analysis of cerebrospinal fluid in the diagnosis of MS is looking for:

White blood cells - the number of white cells in cerebrospinal fluid of people with multiple sclerosis is usually up to seven times higher than normal. If the count is even higher than this, it is probably due to an infection of some sort, such as Lyme’s Disease, and not MS.

Oligoclonal bands - the immune system produces antibodies to fight infection. In MS, antibodies cross the blood-brain barrier and attack the myelin surrounding nerves. As a result, the level of antibodies in the cerebrospinal fluid of someone with MS is higher than it should be and is higher than the level in the blood, a sample of which is also analysed.

The test that shows the presence of antibodies is called electrophoresis. A sample of fluid is placed on a gel and voltage is applied. This causes antibodies of the same size to bunch together, forming visible ‘bands’.

One band (monoclonal) in the cerebrospinal fluid is normal. The term oligoclonal bands refers to the presence of two or more bands and shows the presence of disease activity. Whilst this doesn’t necessarily mean that someone has MS, about 80-95% of people with MS do have oligoclonal banding in their cerebrospinal fluid.

I should of added that I didn’t have a lumbar puncture for my MS diagnosis, I just couldn’t face having it done at the time and my MRI scan showed many lesions. So that gave me an MS diagnosis.

Wikipedia states other conditions with bands:

Oligoclonal bands are found in:

  • Multiple sclerosis
  • Lyme disease
  • Neuromyelitis optica (Devic’s disease)
  • Systemic lupus erythematosus
  • Neurosarcoidosis
  • Subacute sclerosing panencephalitis
  • Subarachnoid hemorrhage
  • Syphilis
  • Primary central nervous system lymphoma
  • Sjögren’s syndrome
  • Guillain–Barré syndrome
  • Meningeal carcinomatosis
  • Multiple myeloma
  • Parry–Romberg syndrome

xx

When I was diagnosed by consultant told me a positive diagnosis couldn’t be made until there had been 2 “apparent” relapses. Despite a positive Lumbar Puncture and evidence on MRI scans he wouldn’t have made a positive diagnosis if I hadn’t remembered I’d had an optical neuritis 10 years ago and had bladder problems similar to those seen in MS.

Hi

Thankyou so much for taking them time to reply.

I had two or more bands so I assume this means MS is very likely?

They took bloods to test for other auto immune diseases would that rule this list above out, do you know?

Thanks

Carlean

Hi Jane

Thankyou for your reply.

I confused does anyone actually have all of those problems positive MRI and LP and then go on to not have MS?

If so where are these people and how come you never read anything about them?

I was very ill 13 years ago MRI showed lesion on Brain stem sine then I’ve had bladder problems pins and neadels balance problems now I have optic noursis and still on diagnosis from the neurologist just says dyemilateing disease . He has referred me to specialist now still waiting for appointment ???

I had my latest humdinger relapse and presented myself, several times during the course of a week, at the local hospital’s Emergency Room.

I got referred to a MS neuro after they were happy i hadn’t had a stroke etc…

I explained the family history of MS my current symptoms and the neuro was unimpressed. I then mentioned, kind of as an after thought, an apparent bout of optic neuritis about 9 months prior and on the strength of that i got a MRI scheduled.

Pretty lesion rich images later… yielded a positive diagnosis of MS. I was offered a LP but gratefully declined!

Clearly, two distinct MS-esque episodes counts for a lot! My advice for those in limbo land… think of past moments of weirdness and sell them!

Thanks for the advice Paolo although should we really have to sell these episodes it make me question the medical treatment we are recieving!

no we should have to… but it can be useful if we do

Hi Carlean,

I think what you are looking for is - What does it take to diagnose MS?

It’s called the “McDonald Diagnostic Criteria”.

There are many either/or conditions that have to be met before a neurologist can make a diagnosis.

You can read the whole Table on many websites, but it is very technical.

Without fulfilling this criteria nobody will make a clinical diagnosis of MS.

I hope this helps,

John.

should NOT have to

(for fark’s sake… still no edit button???)

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Pleeeeeeeeeeese can we have an edit button?!

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Thanks John it’s hard to accept that I may never know for allot of years what is going on