This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi there,

My name is Chris, i have been lurking on this forum for a while now but this is my first post. I am from London and 28 years old.

Approx 6 months ago i started experiencing sympoms that could possibly be due to MS. Initially i went to see my GP who suggested that i see a Neurologist for further investigation. He also did general bloodwork, all of which came back normal. I was later informed that i would have to wait four months for this appointment. At this stage i decided to go and stay with a friend in Thailand to have some tests done privately (cheap but very efficient private healthcare in Bangkok) I could not really afford to do this but waiting 4 months to just have a consult (any tests would have been much longer) was not something i was prepared to do, the symptoms were already interfering with my career and family life.

Without going into too much detail, some of the symptoms i have been experiencing include:

Poking sensation on right side of tongue which has been with me constantly for 3 months
Pins and needles in feet and hands
Tingling in fingertips
numbness in right foot
balance problems
nerve pain in left leg and right arm
problem tensing calf muscle in left leg
night sweats
GERD
cramps in calf muscles that wake me from sleep
fatigue extremely quickly
very poor sleep quality
lots of twitching/fasciculations

Some of these symptoms went after a couple of months, other started soon after but are still current.

I saw 3 neurologists in Thailand, all of whom had different opinions, from possible motor neurone disease to Chronic Inflammatory Demyelinating Polyneuropathy.

I had the following tests done:

EMG and NCV - Normal results (pretty much ruled out motor neurone, that and no weakness)
evoke ssep - abnormal on left side (all neuros have stated that this is nothing to worry about, can never seem to expain why?)
evoke vep - within normal limits
mri of brain w/wo contrast - a few non-specific lesions in frontal white matter. Ischmatic like lesions considered
mri of cervical spine w/wo contast - clean

All neurologists did a thorough neurological examination. They all found hyper-reflexia but this is probably normal for me, one said i had Gait ataxia and furrow of the tongue but the other 2 disagreed.
I then came back to london not knowing much more, motor neurone was ruled out but this was never a concern of mine before going to thailand due to so many sensory symptoms and no atrophy/muscle weakness.

I then decided to see a neurologist at the Nationl hospital for Neurology in london privately as my NHS appointment is not until february. The appointment was yesterday and was with a top specialist for MND but someone who is also experienced in MS. The outcome was extremely frustrating for me.

He started by taking my medical histoty and having a quick chat about my visit/tests in thailand. He then went on to do a thorough neurological examination and said that everything was within normal limits (did not see the hyper-reflexia that other neuros noted) He then looked at all the test results from thailand. he said that the Evoke ssep being abnoraml in my left side was not related and nothing to worry about? no real explanation. He had a quick look at the results from my MRI and said no problem there either (would have been nice to see him study the actual images rather than reading another doctors report and concurring immediately, kind of what i was paying for) He then went on to say that MS was impossible due to the MRI and normal Neurological examination. He said that this was all caused by stress and anxiety and that i should see a psychologist as soon as possible. He also said i have benign fasciculation syndrome which would expain twitching/fasciculations, im not really sure how he could know this though, he saw no faciculations with his own eyes and from what i have read on the bfs societys website it can only be diagnosed after any other possible cause has been ruled out.

I have never had a problem with accepting stress and anxiety as a possible cause but only after anything serious has been ruled out for sure. In my opinion it is too early!

I guess my main questions is this. Is it possible to have a normal neurological examination but still have MS? Surely the MRI could be normal due to the lesions being too small? And surely its possible for me to have lesions on my thoracic or lumbar spine, parts of the spine that were not MRI'd. Especially considering that the vast majority of my symptoms would be related to these areas? Neuro said that 'I DID NOT HAVE MS' very firmly whenever i asked these questions.

What should i do now? i am completely stumped! Sorry for all the questions but i really don't know where to go from here. Should i just accept this and move on....

Any comments/feedback much appreciated

Thanx

Hate to tell you this but this is exactly what happened to my daughter Suzy. Her neuro told her--over a 2 year period--that he did not know what she had but he did know she DID NOT have MS! Her last visit she INSISTED that he give her a diagnosis or she was not leaving his office! He finally said: "Well, I guess you have MS. What else could it be?"

I think this is more normal than not. There are no definitive tests for MS. Once you are diagnosed you are pretty much locked in.

Suzy continued going to doctors over the next 2 years. At one point, she discovered LD (as did I) and she had so many non-MS, Chronic Lyme Disease symptoms she went to a Lyme Literate doctor and started the antibiotic treatment. It was REALLY helping and then so many people were telling her her treatment was a "farse" so she ended up with an MS specialist in Atlanta. With him, I have NEVER been impressed!

As I have been writing on this site, she decided to try an unconventional treatment, having seen it work miracles for others. It is through a (real) doctor and it is natural. (His diagnosis: severe strep infection and last week, fungal infection.) So far, she is doing extremely well. The real test will be her MRI in Feb. from her specialist. She is convinced her lesions will be gone and that the one enhancing one she has will not be enhancing. She has about the same number of lesions you have--very, very few. Her EDSS score is .06. She is "supposed" to have had MS for 8 years.

The reason she decided to try the alternative treatment was because she did not want to live her life--as she put it--zipped up in a body bag. The number of serious drugs her neuro had her on was alarming! Everytime she discussed a "new" anything, they just threw a drug at her. In my opinion, way too much and way too serious to not effect her health! Plus, she was ill all the time. Was it MS or the drugs?

My best advice....read, read, read everything you can get your hands on! Become an active participate in your treatment choices, i.e., don't just roll over for the first thing that comes along. If you have a concern with a drug, find out everything you can about it. Ultimately with this disease, the choice must be yours. There are just no easy fixes!

I wish you the very best. Try not to "rush" for that "final" answer. It never really comes! My prayers are with you every day...Chris (too!)

Chris--As you know already, it is difficult most of the time to nail down an MS diagnosis.

You may be acquainted with many of the personal stories here that are similar to yours. From my own experience I would say what you describe COULD be MS. My first 2 MRIs showed no evidence of MS; the Evoked Response tests and EMG were normal too; a local neurologist and another doctor I saw at the Mayo Clinic said I did not have MS.

Tests and doctors can be wrong--they were in my case. I have MS. The advice here is good--read, read, read. Ask lots of questions. Eat a healthy diet. Stay as active as possible. Give up smoking if you do smoke. Do all those good things we have all been told to do. We all hope you do not have MS, but it could be. Find a physician you feel comfortable with and who is compassionate and willing to work with you.

Chris
hello from another Londoner, also being treated at the National Hospital.
It's often the case that we want a definte dx so that we can deal with IT and all the baggage that goes with IT. If you've been lurking you probably realize that a firm dx is not always that easy to obtain. Neuros will be looking for firm diagnostic markers,(eg two separate areas of the body being affected at different points in time ) as well as the test results. My first neuro told me " You don't have ms....I can't promise you'll never develop it....but you don't have it now." My second neuro, 12 years later, taking a brief history and looking at the same mri the first neuro had said - guess what? "you have ms.." My only advice is keep an eye on it, you know your body and that something isn't quite right, follow up with the NHS appointment and see if anything changes by then, go back to your gp if anything else crops up. All the very best.
muu

I was diagnosed with definite MS after one single episode if nystagmus that lasted about 5 days (4 of those days I was in the hospital being pumped with steroids and ABX). I had a positive MRI, delayed VEP test, and 1 point over max limit for protein in my Spinal Fluid. I had never had another problem up this point, knock on wood, I hope I don't have another. My point is, it sounds like different doctors use different criteria to diagnose, but it is possible that you could be diagnosed whether you really have MS or not.

Brock

Hi Chris

Here is another Londoner being treated at the National.

All I can say is that these experts are pretty good with the clinical examinations. There are certain tests which are pretty indicative of MS. On my first visit, when everyone else thought the symptoms were in my head, he examined me and sent me straight off for an MRI. He knew before the spinal tap/ep's although they need 2 from 3 tests to be positive before even diagnosing anyone as "probable MS".

So I would say perhaps it's worth considering what your neuro has said. It does sound neurological, but perhaps the markers for MS aren't there, and maybe they never will be.

Good luck.

J.

Chris, I must second Jaded here. MRI tests can appear normal in the early stages but there are certain neurological tests which would be pretty indicative of MS. The neuros at the National would know that: you can trust them more than anyone in Thailand, where MS must be a pretty rare occurrence. Here it isn't, and at Queen's Square, they see it all the time. I really do think you should accept the diagnosis and move on, you are marked for life if you get an MS diagnosis, so why wish it upon yourself?

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Chris,

I totally agree with Jaded and anecdote opinions.

When a doctor tells a person,

" He said that this was all caused by stress and anxiety and that i should see a psychologist as soon as possible."

my assumption is that the physician is either clueless about your illness, or doesn't want to spend the time to determine the cause of your symptoms.

Find another neuro.

gwa

Hi all,
just wanted to say the following to clear up any misunderstanding there may have been. I am absolutely satisfied with the treatment I have received at the National. The professionals I have seen there have been fantastic. I agree with the previous posters that they see ms all the time- they are the experts. I have every confidence is what they have said to me. The first neuro I referred to was NOT at the National- it was the National that gave me the dx based on infor that was previously available. However we know our bodies and if something is going on that isn't quite right and I believe Chris should monitor that.
muu

Hello,

It was not mentionned specifically what type of blood analysis was done. But if you do not have the results at hand,re-check specifically level of B12 vit., as persons unable to absorb B12 via food get low level of B12 resulting in myelin destruction and neurological symptoms as well.

Regards,
Degerlache

Chris,

It is possible to have a normal neurological exam with an MS diagnosis - I've been told on recent visits my neuro exams were normal, although the first one, right after my diagnosing event, was probably not quite. I had an abnormal MRI and was diagnosed based on that. I had no other tests. Like you, subsequently have a lot of muscle twitching, which my neuro told me not to worry much about, and some minor tingling and parathesias, particularly in my lower legs, and some vertigo, especially when I first wake up. I had nerve conduction tests done on my arms since I was waking up with numb hands, but the test was normal - I've since figured out that is a circulatory problem due to the way I sleep. So even with MS, not everything is MS.

Although MS is possible, remember it might not be MS. Between now and your next appt., I'd second some of the others' recommendations of getting a good nutritious diet and perhaps even getting with a nutritionist, trying to get some rest, and also trying some relaxing exercise and stress reduction techniques like yoga or whatever might appeal to you. Try to enjoy the upcoming holidays and think about something else. All this is easier said than done, I know, but whatever the origin of your problem is, more stress doesn't help. The doctors' suggestion for a psychological consult might be something to think about. I suspected my diagnosis before I actually had it, and had been referred to a psychologist between recovery from my illness event and actually getting to a neurologist for a consult, which took weeks. The psychologist was there for me when I did get the bad news. If your problems are related to anxiety, a psychologist might help with that. If they do ultimately have some physiological origin like MS (I hope not) or a continuing state of ambiguity (I hope not) the psychologist can still be of help by giving you someone away from friends and family to help deal with the stress.

Good luck, and may your symptoms just go away!
Lisa