Fasc on EMG, Clear MRI, but sympts mimic MS???

[R72]

Hey there,

This is a story that I'm sure that you are familiar with, but I'll try and keep it short!

I am a 38 year old female

In 1999 there was a period of time where I suffered from extreme leg spasms that were excruciating and ended up leaving me on crutches for over a month.

My right leg went into spasm, healing from this took a week and then the left leg repeated the process, with the same result. After the initial spasms my legs felt constantly tingly and my right heel felt like there was a piece of paper stuck on it when there wasn't! My speech became slurred and my eyesight also took a turn for the worse. I have always had an 'essential tremor' but during this time even simple tasks - like putting a knife into a knife block, writing a short paragraph, cutting up fruit - became mammoth efforts as I struggled with the shaking and twitching that beset me every time I tried to do something.

Over the course of a month or so the feeling gradually returned to my legs, my speech and tremor settled and there were no further issues.

I had visited the doctor after each spasm and when the feeling in my heel had not returned after a week - 3 visits in a month. (Previously I had been to the Doc 3 times in my life, so I am not prone to seeking professional advice unless I really feel that it is necessary!) He had taken bloods, looked at my heel and sent me home with a 'wait and see' approach.


Fast forward to Jan 2008

The spasms returned with a vengeance, as did the bad tremor and twitch, I couldn't concentrate - I was trying to study and had to give up because I couldn't read the page properly and I couldn't retain information that I did read - well, it was there, but it was like I couldn't access it immediately. My word recall became embarrassing and my co-ordination was also affected. (My husband and I were very good ballroom dancers, but we had to give up because I could no longer perform basic moves properly, not only because of the weakness in my legs, but because my co-ordination was so shot)

I went to my doctor, was prescribed baclofen, and was referred onto a neurologist.

My symptoms did get markedly better over the winter of '09 - We even tried going back to dancing albiet at a lower grade.

In October 09 the symptoms returned again and this time stayed. Each attack of spasming leaves me with less function in my legs - to the point where without the Baclofen (60mg daily) I need crutches to walk any distance. It may sound strange, but on a hot day even walking my daughter the 200m trip to school is a real challenge even with Baclofen on board! Mostly I just stay inside with the air con on when the temp heats up.

I am now at the point where any exercise or excessive heat causes paralysis of my foot, my left leg is following the same pattern as the right leg and has started tingling with numbness in various areas, my right hand/arm has started stiffening up and I am getting numbness across my forehead and down my jawline. I am also struggling with my speech more and more.

I have days where the spasming, fatigue, tremor, numbness and cognitive stuff is quite profound, and days when it is OK, but the lack of feeling in my legs progressively gets worse after each episode.

(I also have 4 young children so I do not have time to focus on my symptoms, but I am having to make a note of what I need help with at any particular time )

I am sorry to ramble, but I am getting to my question and the cause for my confusion.

As you would be aware, neurology is a very indefinite subject and does take time - 6-12 months between appointments etc etc. So I tried to be proactive. I went down the nutritional deficiency path and employed the services of a nutritionist who specializes in sports/injury recovery nutrition. After a year with no improvement he came out with the suggestion that maybe I had MS - based on his observations and his experience.

I then went to two nationally well respected ND's, in two different areas who independently came up with the same conclusion - MS
One said it within the first consult, the other after doing some testing for other causes - including adrenal dysfunction, hair analysis to rule out toxins, and a couple of other blood tests. I have also had an MD suggest it as a cause and several other (diagnosed) sufferers have agreed that my symptoms closely match theirs.

Here's where it gets confusing....

I have had 2 EMG's on the right leg.
The first was March 09 which showed;
some tibialis anterior fasciculation and fibrillation (1+ for each) polyphasics were less than 20% amplitude mv was .3-3.0mV
the gastrocnemius had fasciculation of 0-1+, polyphasics of <20%, amp .3-1.6 mV

The second reading of the same leg last week (Feb 10) showed;
tibialis anterior - fasc 0-2+, fib 1-2+, polyphasics 20-30% amp .3-1.6mV (a reduced pattern)
gastrocnemius fasciculation 0-1+, polyphasics 20%, amp .3-2.0mV working at 50% of normal.

A brain MRI early last year was clear and I am booked for a lower back scan at some point in the future - My neuro expects this to be normal.

At the EMG I thought that I'd just come out and ask the doctor if it was MS - despite the lack of any lesions in the MRI - and his answer was an emphatic 'no' and that there was 'nothing in my history to suggest it'. But at the same time he has booked me in to see a visiting Neurologist who specializes in MS, ALS and other demylination and motor neuron diseases.

I have heard that an EMG should be normal in MS - But that MND does not show up on an MRI, does not remit/regress and is not affected by heat or exercise? Is this always the case?

I don't want to have either MS or MND, but I also do need to be able to move forward with some sort of direction! I would be so grateful for any information, guidance or advice that you could give me which would help.

Thank you,

Rachael

[MG (Admin)]

Please could you tell us what the neurologist found the last time you had a full neurological examination.

[R72]

Hi, thanks for replying.

The last full neuro exam performed was at my first appointment 2 years ago. Since then my neurologist has only tested my legs, despite him having the full list of the symptoms that I was experiencing.

At the last neurological exam weakness in my r. foot was noted as was a loss of co-ordination but no other testing was done. This exam was in Nov and before my EMG in Feb.

At the EMG I thought that I'd just come out and ask the doctor if it was MS - despite the lack of any lesions in the MRI - and his answer was an emphatic 'no' and that there was 'nothing in my history to suggest it'. But at the same time he has booked me in to see a visiting Neurologist who specializes in MS, ALS and other demylination and motor neuron diseases.

This answer baffled me because right from the start I had told him about the vertigo, the different type of shaking that I experienced, the eyesight trouble and the fact that heat seemed to set it all off. I have also informed him of the progressive nature of the numbness/tingling in my legs and arm, the weakness in my foot that prevents me from even driving, the vertigo that is set off by both sight and sound, the fact that my tongue can not cope with words that are more than 2 syllables long and the numbness in my forehead - I would have thought that these were all fairly straightforward, clinical signs that would at least warrant further investigation.

These all appear with the leg spasms about 3 or 4 times a year and are really intense for between 2-7 days before everything begins to settle down and within a month or two I am back to almost where I started - albeit with a little less feeling somewhere. In summer I don't recover so well, in winter it is a pretty straightforward pattern.

Anyhow, last week my neurologist and I went to the visiting expert mentioned above - it was a teaching clinic for the neurologists in the area. I was shocked, the case that my Dr presented was one of a woman that had 'suffered from intense cramping and fasciculations since she was 14 and was now virtually disabled'.

The visiting Neurologist performed a quick EMG. He tried to get my legs to spasm but they didn't even attempt to cramp anywhere, which baffled him slightly He also could not get enough movement during the EMG to get a 'working' pattern - that is simply because there is no power in that muscle group - if I can't work an accelerator, a neuro's hand also doesn't stand a chance.

The visitor announced that there were no fasiculations and that it could only be 2 things Stiff Person Syndrome or 'cramping without cause' (ie don't know).

No other symptoms were mentioned, so they were not discussed and obviously no full exam was done because the assumption was made that my Dr had done his homework properly.

Currently I am fuming, I have not had copies of the reports that my neurologist has sent to my doctor so I had no idea about what he might have been thinking. I had no idea that he had not listened to a single thing I had said or read a single thing that I had written. I have now realized that he has not taken notice of anything other than the leg symptoms that involved cramping and that my first instinct were right - he was putting everything else down to stress/tiredness/neurotic housewife syndrome.

The worst thing is that based solely on the visiting experts diagnosis my spinal MRI has now been canceled.

I know that neurology is not an exact science - I get that.
I also know that without lesions MS can not be definitively diagnosed - I get that too. And for the record - I don't particularly want MS either.

All I want is for the emphasis to come off the single muscle cramping and back onto the pattern of symptoms. It may not be MS - that would be great, but something is causing all of this, whatever you call it, I am on some sort of journey and I just would at least like an idea of what 'airline' I am flying with

So how do I get the focus onto diagnosing the big picture?

Sorry, my question has changed completely with the 'no fasciculation' observation, but any advice that you could give would still be hugely appreciated.

Rachael

[R72]

Hi, just a quick update.

I managed to get my spinal MRI re-booked and it has come back clear

I had a hair analysis done - the results had said that I was absolutely loaded with lead and antimony. I went to my GP and we got bloods done which have come back normal. So if there ever was a heavy metal problem, it is not a current or ongoing exposure

Meanwhile my condition has deteriorated to the point where I have not had a 'recovery' phase in several weeks. Where once I would get 'attacked' and recover, now I just keep getting attacked.

I am permanently reliant on my walking stick and having someone to drive me around.
My leg spasms are happening more regularly and the baclofen seems to be less and less effective against them.
I get woken up at night because I have the feeling that I'm about to pass out (vertigo?)
My legs are now constantly cramping or twitching - at night they also are bad enough to wake me up - no I am not getting much sleep

My face has a permanent 'sticky paper' feeling across the forehead and down the jawline.
My right foot is permanently numb and this is creeping up my leg.
My left foot is beginning to follow the same path as the right.
My left hand keeps trying to curl up into itself when I'm not using it.
My speech has deteriorated so much that I almost dread having friends around because I start to sound like I'm drunk or 'not quite right' mentally after more than a sentence.

I guess that I am beginning to be a bit scared of the future, mainly because of the speed of the progression of 'whatever' this is. At least when I had the recovery phase I could think and plan a bit, now I am having to hire more and more help to do normal things, with no direction to be able to plan for the future.

My neurologist seems more than happy to put me on beta-blockers and say 'don't know'. The fact that my foot was paralysed for a week didn't even make it into his last report, but he did notice marked weakness in my right side and 'difficulty maintaining muscle strength' so I really do not know what to do from here......

Please, any advice, direction, questions to ask at my next appointment?

Rachael