Confusing symptoms

I have been having a variety of neuro-muscular symptoms off and on for the past two years and would appreciate any advice you might offer.  Two years ago, after a bad bout of flu, I started having tremor, muscle spasms and tingling in my left arm.  I lost quite a bit of strength in my grip but eventually recovered most of it. A few months later the pattern repeated itself but in my feet.  For a couple months I had difficulty walking but then got better.  My EMG, evoked potentials and MRIs were all normal, as were all lab tests with the exception of elevated proteins in my CSF.  I ended up being treated for Lyme and felt better for a couple months (but worry I was getting better anyway - also my Lyme tests were negative).  Now I am having another flare up but also have some new symptoms - involuntary muscle jerks, fasiculations in my legs and myoclonic jerks at night.  My internist repeated a brain MRI which was normal.  I also had a complete workup by a rheumotologist last month which also didn't come up with anything.  I have had alot of stress and my internist has suggested that this might be the cause of my symptoms.  I am of course worried about MS - can you have MS with a normal MRI?  Thank you,

[CCF Neuro[P] MD, RPS]

Dear Anne:

Sorry to hear about your symptoms.  The good news is that your MRI of the brain is normal as well as EMG testing.  Yes, one can have MS with a normal MRI of the brain.  Usually, it is in the very, very early part of the disease or the patient has the MS located strictly in the spinal cord.  If they also did spinal MRI films and they were normal, then the chances of MS begin to become lower.  When they did the CSF analysis, did they look for myelin basic protein levels, IgG synthesis and oligoclonal bands?  The elevated protein, did they make a comment was it just albumin and was it extremely elevated or only minimally?  A post demyelinating illness known as acute demyelinating encephalomalcia can give one many of the symptoms you describe but the event resolves and doesn't return.  There are also changes on the MRI of the brain with this entity.  Since your symptoms have returned and your MRI was normal, twice, I doubt this diagnosis.  

Since you did not comment on your neurological exam, I will assume that it was done and was normal.  Also, that all your blood work has been normal up until now with the only abnormality the increased protein in the CSF.  I think I would ask to have a spinal MRI just to rule out the possibility of MS of the spinal cord. I really don't think your symptoms suggest MS as we think of MS as a central process (brain and spinal cord) and your symptoms have feature of a peripheral process (fasciculations), however without peripheral nerve or muscle signs of EMG changes. One can have cord compromise and have similar symptoms as yours but the neurological exam would be abnormal.  Certainly anxiety can give these features, but whether your having these symptoms due to anxiety, I can't tell.

Sorry that I haven't been much help.

Sincerely,

CCF Neuro MD

[Anne]

I forgot to mention in my post above that I am a 47 year old woman and that I also have fatigue and pain from the muscle contractions in my legs.

[Kay to Laurell]

Have you thought about BFS, Benign Fascicular Syndrome.  I have many of your symptoms.  Try the Mass General Hospital Web Forums under Neuromuscular.  You will find many postings from people with your symptoms.  I think it will ease your mind. Good luck.

[Skiwi - light flash when lean forward is]

Hi

Just wondering if any of you in the forum have this symptom or know what it could be.(Sorry to add on to someone elses post, but I need advice)

When I lean my head forward to dry my hair, or wash my hair I see a sudden flash of light and sometimes a jumble of pictures and can't see the room around me when it happens.  At the same time my whole body jumps like a huge whole body reflex jump like when you fall asleep.  At the same time it feels like a pressure surge going down my spine from my head.

I also have other neurological things going on, but my neurologist doesn't know what is wrong.  This is just a new thing that has been happening for the last 3-4 weeks.

Thanks

Skiwi

[anon]

Kay, what is the website for mass general?

[Reenie]

Hi Anne.  E-mail me if you feel like it.  We have many similarities in our cases.

[Reenie]

Hi Anne.  E-mail me if you feel like it.  We have many similarities in our cases.  Forgot to say my e-mail:  ***@****

[monkeygirl]

Hi,

I am a 23 year old who has been suffering from a number of health problems all my life, but serious problems for the past 6 1/2 years.  I have gastroparesis (paralyzed stomach), long QT irregular heartbeat),  and chronic problems with hypokalemia.  Over the summer I learned about a rare neuromuscular disorder in the hypokalemic periodic paralysis family known as andersen's syndrome.  Andersen's can cause long QT, low potassium, gastroparesis, difficulty breathing (weakness of breathing muscles), sleep paralysis, muscle spasms,pain, and cramping, also numbeness and tingling in extremeties, weakness...and there are often specific triggers such as eating carbs, sugars, exercise, sleep, and others.  There are a number of other symptoms too.  What happens in andersen's, is that the person has a sensitivity to potassium levels, more so than the average person.  In andersen's, potassium levels fluctuate very quickly causing symptoms of paralysis, weakness, etc.  People with andersen's have had symptoms when potassium has been low normal.  My long QT interval has always been related to low normal potassium levels.  I've had three cardiac arrests when my potassium has been 3.5 (normal is 3.5-5.0).  Most people would not have difficulty with potassium at that level.  I also have extreme weakness when my potassium is low or low normal.  My lowest documented potassium level has been 2.7, and typically it runs from 3.3-3.7.  I am on 200% potassium right now through a j-tube (because of the gastroparesis) and my potassium is still only 3.7.  I also suspect it fluctuates throughout the day as I have attacks of weakness.  I was in the hospital for seven days in August and was not responding well to IV potassium.  My potassium would get above 4.0 on IV potassium, and in a few hours drop way down again.  It even dropped at one point from 3.4-3.1 after eight hours of potassium, and while still receiving potassium!  At one point my potassium dropped from 4.4-3.5 in 3 1/2 hours. I was not eating, and I was not vomiting, had no diarrhead...all GI tract potassium losses have been ruled out as well as a renal leak.  I have not been diagnosed with andersen's yet because I have to go to Rochester, NY for a diagnosis, and I haven't been able to go yet. My doctors have never been able to ink all of my problems together, but this could be the link.

When my potassium is low, I have a lot of problems with muscle spasms, and even when it is low normal (common for andersen's).  In february I had muscle spasms so bad that when I made it to the doctor he asked me about a history of seizures because I was jerking so bad.  They lasted that bad for two week, and they improved somewhat, although they have never gone away completely.  I still have very bad spasms all the time, and they even are so hard that they wake me up at night.  I have not yet had an EMG because I am waiting to go to Rochester for that.  These spasms are very annoying, but I try to live with them.  Hopefully if they find andersen's, it will explain these for me.  Anybody ever heard of andersen's or any of the Hypokalemic periodic paralysis? They are not very common. My e-mail address is ***@**** and I also have a home page at www.monkeygirl.atfreeweb.com

[monkeygirl]

Hi,

I am a 23 year old who has been suffering from a number of health problems all my life, but serious problems for the past 6 1/2 years.  I have gastroparesis (paralyzed stomach), long QT irregular heartbeat),  and chronic problems with hypokalemia.  Over the summer I learned about a rare neuromuscular disorder in the hypokalemic periodic paralysis family known as andersen's syndrome.  Andersen's can cause long QT, low potassium, gastroparesis, difficulty breathing (weakness of breathing muscles), sleep paralysis, muscle spasms,pain, and cramping, also numbeness and tingling in extremeties, weakness...and there are often specific triggers such as eating carbs, sugars, exercise, sleep, and others.  There are a number of other symptoms too.  What happens in andersen's, is that the person has a sensitivity to potassium levels, more so than the average person.  In andersen's, potassium levels fluctuate very quickly causing symptoms of paralysis, weakness, etc.  People with andersen's have had symptoms when potassium has been low normal.  My long QT interval has always been related to low normal potassium levels.  I've had three cardiac arrests when my potassium has been 3.5 (normal is 3.5-5.0).  Most people would not have difficulty with potassium at that level.  I also have extreme weakness when my potassium is low or low normal.  My lowest documented potassium level has been 2.7, and typically it runs from 3.3-3.7.  I am on 200% potassium right now through a j-tube (because of the gastroparesis) and my potassium is still only 3.7.  I also suspect it fluctuates throughout the day as I have attacks of weakness.  I was in the hospital for seven days in August and was not responding well to IV potassium.  My potassium would get above 4.0 on IV potassium, and in a few hours drop way down again.  It even dropped at one point from 3.4-3.1 after eight hours of potassium, and while still receiving potassium!  At one point my potassium dropped from 4.4-3.5 in 3 1/2 hours. I was not eating, and I was not vomiting, had no diarrhead...all GI tract potassium losses have been ruled out as well as a renal leak.  I have not been diagnosed with andersen's yet because I have to go to Rochester, NY for a diagnosis, and I haven't been able to go yet. My doctors have never been able to ink all of my problems together, but this could be the link.

When my potassium is low, I have a lot of problems with muscle spasms, and even when it is low normal (common for andersen's).  In february I had muscle spasms so bad that when I made it to the doctor he asked me about a history of seizures because I was jerking so bad.  They lasted that bad for two week, and they improved somewhat, although they have never gone away completely.  I still have very bad spasms all the time, and they even are so hard that they wake me up at night.  I have not yet had an EMG because I am waiting to go to Rochester for that.  These spasms are very annoying, but I try to live with them.  Hopefully if they find andersen's, it will explain these for me.  Anybody ever heard of andersen's or any of the Hypokalemic periodic paralysis? They are not very common. My e-mail address is ***@**** and I also have a home page at www.monkeygirl.atfreeweb.com

[CJ @ MGH to Anon]

Anon,

You asked for the web address for Mass General.  It is:
http://neuro-www.mgh.harvard.edu    Come visit.  We'll hook you with all the Forums available for you to participate in.  Come on over.  Welcome is embossed on our doormat. - CJ