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5 white blobs in brain

by Carol Spencer
(Penznce, Cornwall, UK)

The Falls Clinic doctor who looked at my MRI said that it was normal to get one white blob per decade. I find this difficult to believe what do you think? I feel as though he is not taking all of this seriously. Also, are there any other conditions or diseases that could result in these 5 blobs in my brain? I have had to ask for a second opinion, which felt awkward and now have to wait......... again. Help!

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Jan 27, 2012
Rating
starstarstarstarstar 		Other Demyelinating Conditions
by: Akrista

Hi Carol,

So sorry you have to wait for your second appointment. I know you are in the UK and I'm not familiar with exactly how your system works. If you were here in the US, you'd, no doubt, be waiting as well.

I'm not a doctor, so I've never heard of the one blob per decade - so that may be true. There are a few other conditions which can cause demyelination. Here are a few:


  • Optic neuritis — an inflammation of the optic nerve in one or both eyes - a very common early symptom of MS

  • Devic disease or (neuromyelitis optica) — an inflammation of the optic nerve and spinal cord

  • Transverse myelitis — inflammation of the spinal cord

  • Acute disseminated encephalomyelitis — another condition which causes inflammation of the brain and spinal cord

  • Adrenoleukodystrophy and adrenomyeloneuropathy — these are rare, inherited metabolic disorders



Unfortunately, there aren't any cures in the medical community for demyelinating conditions. And symptoms and progression is different for each person. This makes it very difficult to pin-point the cause of diseases like this.

As I said in an earlier post, a neurologist will have to do a complete examination to rule out any of the other reasons for your blobs. And as far as the symptoms, there are many medications - sometimes even vaccinations which can mimic the symptoms common to MS.

So try and be patient and not stress out over the waiting part. Begin doing things that are healthy, like eating better, exercising when you feel up to it, and getting plenty of rest when you need it.

Developing good habits like this now will give you a jump start on managing any kind of condition you may have. And if it turns out you don't have any of them, you've at least taken steps to improve your overall health.

Take care,

Akrista
Apr 04, 2012
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starstarstarstarstar 		Lumbar Puncture
by: Carol

Today I had a Lumbar Puncture, for anyone out there who is waiting for one of these. I can't say that it was painful, more weird pulling and pushing sensations. The running commentary to the student onlookers was more scarey than the procedure itself.

I now await the results.

REPLY:

Hi Carol,
I wondered how things were going with you. The results from this test should prove one way or the other whether you have MS or not. You've had the MRI's and everything else, so this should be it, I imagine.

About the lumbar puncture - I had to have emergency surgery a number of years ago and one of the things they tried before they finally figured out what was wrong, was this procedure.

Unfortunately, they couldn't get the needle through my vertebrae to even complete the puncture. I was so afraid that they would paralyze me or something, and was really glad that they couldn't do it.

I'm sure nothing like that happens on a regular basis - but I had never had one before - even with my pregnancies (they were all natural), I was just always afraid. I'm glad yours went alright and look forward to hearing the results as well.

Did they give you a time frame - weeks or month or two? How long does it take to get the results back?

Take care,

Akrista
Apr 05, 2012
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starstarstarstarstar 		Lumbar Puncture
by: Carol

Hi Akrista and thank you for your reply. The results should be back in 2 to 3 weeks. I still don't really understand what it is that shows up in spinal fluid in order for a diagnosis to be made. I have been told, but am finding that as soon as I leave the doctors office or hospital, my mind is completely blank. Maybe anxiety! Is it something to do with protein?

Kind regards,

Carol
Apr 09, 2012
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starstarstarstarstar 		Lumbar Puncture........4 day head ache
by: Carol

As I said earlier, I had a lumbar puncture last week. I rested a bit on the day after because my back felt a bit sore and thought that was it. But fourty eight hours after the test, a headache developed in the front of my head. The headache started to abate this afternoon and now has almost gone, thank goodness.

Carol
Apr 14, 2012
Rating
starstarstarstarstar 		Lumbar Puncture
by: Carol

I must admit to being very anxious whilst waiting for the results of my recent lumar puncture.

What I don't understand is, what is it that shows up in the fluid to enable a diagnosis?

Also, I know at least two people who have MS and their tests came back clear. So what's it all about?
Apr 14, 2012
Rating
starstarstarstarstar 		Lumbar Puncture for MS
by: Akrista

Hi Carol,

Just found this on the Web MD website:

How Does a Spinal Tap Help Diagnose Multiple Sclerosis?

A spinal tap that reveals a large number of immunoglobulins (antibodies) as well as oligoclonal bands (the pattern of immunoglobulins on a more specific test) or certain proteins that are the breakdown products of myelin is suggestive of MS. These findings indicate an abnormal autoimmune response within the brain and spinal cord, meaning that the body is attacking itself.

Over 90% of people with MS have oligoclonal bands in their CSF. While increased immunoglobulin in the CSF and oligoclonal bands are seen in many other brain and spinal cord conditions, their presence is often useful in helping to establish a diagnosis of MS.

However, a "negative" spinal tap does not rule out MS or other diseases. An abnormal autoimmune response in CSF is found in a number of other diseases, so the test is not specific for MS. Conversely, some 5%-10% of people with MS never show these CSF abnormalities. Therefore, analysis of the CSF by itself cannot confirm or rule out a diagnosis of MS. It must be part of the total picture that takes into account other diagnostic procedures such as evoked potentials and magnetic resonance imaging (MRI).

Web MD - Multiple Sclerosis Spinal Tap (Will open in a new window).

According to this, if you've had all the other tests, this may be the deciding factor. If not, you may be in for a few more tests to rule out other things. I feel that many doctors want to be as sure as they possibly can before saddling anyone with a diagnosis like MS.

Even though, for you, it's taking so long. Just finding out will be a relief and put an end to all the questions and uncertainty that you've been experiencing. Hopefully this will be it and doctors will be able to give you an answer one way or the other.
Apr 15, 2012
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starstarstarstarstar 		Thank you
by: Carol

Thank you Akrista I will look at Web MD.

Regards Carol
May 02, 2012
Rating
starstarstarstarstar 		More Confusion
by: Carol

The Falls Clinic doctor has given me a diagnosis of Cerebellar dysfunction and postural hypotension. He did not explain this to me or give me any prognosis. Just prescribed dispersable aspirin and 200mg Fludrocortisone [the fludrocortisone has made my anxiety and depression even worse].

I have been taking Venlofaxine for anxiety/clinical depression for several years, plus Zopiclone at night.
Can anyone help with an explanation of Cerebellar dysfunction?
The Neurologists letter came yesterday. He has said that, as there were no oligoclonal bands in the cerebrospinal fluid, it is unlikely that symptoms are due to MS. The symptoms therefore are unexplained at present.

No mention of Cerebellar dysfunction etc. In the meantime, all of the neurological and physical MS symptoms remain with me and deep down I do feel that this is what it is. Help!

Carol
[Penzance UK]
May 08, 2012
Rating
starstarstarstarstar 		Connection
by: Carol

Is there a connection between cerebellar dysfunction and MS?
May 19, 2012
Rating
starstarstarstarstar 		MRI Report
by: Carol

Hi and thank you to Akrista and everyone who has replied to my comments.
I managed to get a copy of the MRI report which reads.......

Multiple areas of increased signal intensity within the white matter. These are more numerous than normally found in the patient this age. "I am 59". Some of these lesions have a rather ovoid appearance but are otherwise non-specific. The differential includes ischaemia and demyelination.

There is spondylotic disease of the cervical spine with flattening of the normal cervical lorosis. There are small osteophtic disc bars at C4/5 and C5/6 with narrowing of the left intervertebral foramen at C5/6 and possible compromise of the left C6 nerve root. Degenerative disc disease at L2/3 with the posterior disc bulge.

As I said in a previous comment, there were no O bands in spinal fluid so no diagnosis at present.

Last week I sat in the sun for 10 minutes and started to feel very ill. I staggered like a drunk into the house and since then I have been experiencing all of the previous symptoms, including falling twice, plus burning neuralgia type pain in left eye and head.

It definitely feels like some sort of relapse brought on by the heat. I have to see neurologist on 12th June but in the mean time can anyone give me their views on all of this.

Thank you in advance.

Carol
May 27, 2012
Rating
starstarstarstarstar 		Getting scared
by: Anonymous

Since the weather has been so glorious here in Penzance I have been feeling more and more ill. For the last two days I have hardly left my bed, total exhaustion, tingly feet and unable to walk straight. I just want someone to tell me why??? that's all.

I have made notes of all of this to show Neurologist in June, is there anything else I could be doing?

Carol




Reply:

Carol, if I were you, I would begin using MS symptom management options that are within your control. In other words, manage the heat by staying indoors or when you go out, use a cooling necklace or fan mister with ice in it.

You won't be able to get some things covered without a diagnosis, but I would try. Perhaps you can ask your doctor for a prescription for a cooling vest or try the Tri-County Independent Living Center in your area.

Let them know that you haven't received a definite diagnosis - or give them the one you have - and see if they can accommodate you with any of the things you need. Let them know all that you have been through, and they may be able to provide you with canes, walker, or possibly even an electric scooter.

I know you are bed bound right now, but it should pass if you have relapsing type of illness. Definitely write down all of your symptoms and why/when they occurred. This will not only help you to remember things when you go back for your doctor visit, but will help the doctor to understand more clearly what is happening.

Even if it turns out that you don't have MS, these simple measures should still help you out. If anyone else has any suggestions, please don't hesitate to add them.
Jun 10, 2012
Rating
starstarstarstarstar 		Stroke diagnosis with no tests???
by: Carol

I had to see the original doctor [Falls Clinic] for a follow up, even tho I am now seeing a neurologist. I told him everything that I have written in my post regarding effects of the heat. He didn't seem very interested in what I was saying, all he said was that I havn't got MS because no O-bands in spinal fluid, and that I must have had a stroke.

I couldn't believe he said that without any kind of examination or tests. He has prescribed Beta Blockers! Even tho my blood pressure is always low. How can this be right? I said to him that he didn't seem to know what to do with me and he admitted it was a bit of an experiment.

I find I am getting more an more depressed and anxious. I see neurologist on Tuesday, should I ask for an MRI, my first one was last November? Are there any other tests I could ask for. Sorry to go on so much but it does help to know that this will be read.

Thank you Carol



Reply:

Hi Carol,

I know it's Tuesday and you've already been to the neuro. We're in moving mode again and I'm just getting to the computer. Hope all went well and you got satisfactory answers to your questions.

An MRI would probably be a good thing to see if there has been any progression.

About your doctor, not sure if there is a way to switch doctors easily in your medical/insurance plan. One way we find good doctors for Cir is to as for a referral from a doctor you trust.

This works, maybe 60 to 80% of the time. Sometimes the doctor may just refer you to their friend or colleague. Another way is to go online and search for a specialist and see if there are any reviews/testimonials about them.

I was having second thoughts about my GP until I went online and found that he had very good reviews. I decided to stick with him. The third way is to ask people you know.

Again, sometimes this works, sometimes it doesn't. It just depends. When you find a doctor that is a good fit, hang onto them. S/he should be someone who listens and takes into account your feelings and answers your questions thoroughly.

I really hope you can find a doctor like this and I hope your neurology appt. went well.

Take care and hang in there,

Akrista





Jul 03, 2012
Rating
starstarstarstarstar 		Not Convinced
by: Carol

Hi Akrista
The neurology appointment was with a different doctor, no continuity was quite disconcerting for me. This doctor seemed to have already decided that ALL of my symptoms are PROBABLY due to ischaemic disease and multiple TIAs.

He did the usual physical examination and I was trying to describe how the symptoms made me feel, including the new symptom of a vice like gripping feeling under my ribs. He still said I do not present as having MS, especially at my age.

I had tried to tell him and the other doctors, that I can remember weird things happening to me way back when I was 18, and again in my late twenties, thirties and fourties. Really do not feel I have been listened to, they make me feel like a hypochondriac!

The result of the scan of carotid arteries was clear with no furring or blockage, which is good. I am still waiting for the evoked potential test appointment.

I am not convinced that I do not have MS, I feel I may have both ischaemic disease and MS lesions because the larger lesions on the outside are an oval shape, whereas the smaller ones are round. Any comments or advice would be very welcome.

Thank you ....
Carol




May 13, 2013
Rating
starstarstarstarstar 		The Telling
by: Carol

Hi
Could anyone help with how best to explain to my elderly parents about how MS has changed my life.

Up until I became ill 3 or 4 years ago I drove 600 mile round trip to visit my parents 4 times a year.

Since I have been ill I can no longer drive long distances and am terrified of the thought of train or coach travel on my own. Therefore I have to rely on lifts from my children.

My parents cannot seem to understand how MS and chronic arthritis have changed me and my life.

They manage to make me feel very guilty, as though I don't care about them.

Thank you
Carol

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