Another MS Mimic

[Todd36]

Hello everyone,

Some of you have supported and followed me along the way while I’ve been trying to figure out what I’ve been dealing with.  Things have recently taken an interesting turn after speaking to a new doctor, a doctor in marine biology.  

I’ve intermittently lived in the Western Pacific and South Pacific for 8 years now, and I have recently spent a considerable amount of time living in Hawaii.  So what does this have to do with MS mimics?  Well…many fish that inhabit in the tropical Pacific consume small organisms called dynoflagelates that carry a neurotoxin called Ciguatera.  This neurotoxin bio-accumulates in the flesh of fish, and when consumed by humans, it can create all sorts of strange and frustrating neurological symptoms similar to MS.  Prior to developing of my condition, I ate a lovely parrotfishe and experienced mild diarrhea, flu like symptoms and suffered from nausea, and shortly after developed diffuse muscle twitching, neuropathic pain, leg cramps, etc.

If you’re curious and want to learn more about Ciguatera, please visit the following site to learn more [http://en.wikipedia.org/wiki/Ciguatera].  There doesn’t seem to be much about it on the internet but there are numerous scientific articles in the primary literature that can be found using “Google scholar”.  I’m just hoping I can find a doctor in mainland US familiar with Ciguatera to see if that’s what I’ve been dealing with.

Best fishes,
Todd

[sllowe]

Thank you Todd, you are so right, we really do need some of these things on our radar, as do the Drs.  

I hope you find the right one to pursue this, and that you don't forget about us....guess I'm saying, you are not allowed to leave...ha/ha

see you around,
feel well friend,
Shell

[Lulu54]

Todd,
I did what you said and googled ciguatera and was amazed at the list of symtoms.  Wrongdiagnosis. c om probably had the longest list of posibilities.  keep in touch and let us know if you find some treatment, ok?

best fishes to you too!
Lu

[Todd36]

Although you can probably find ciguatera in many fishes inhabiting Hawaii, it is generally the ones inhabiting the nearshore reefs that cause problems.  Ahi, mahi mahi (aka dolphin fish aka dorado), opah, etc. are *generally* pretty safe.  I've eaten a ton of surgeonfish and parrotfish in my days and they're known to carry ciguatera in Hawaii.  The benefits of eating fish far out way the chances of getting ciguatera poisoning, so please keep eating and enjoying it (so long as you're eating sustainably caught fish ;)

All my tests list above have been negative and my neurologist was fairly confident I don't have MS (although he is human and I'm sure he has mis-dx before).  Ciguatera poisoning is just another mimic that people on this forum should be aware of, esp those in "limbo-land".  

[Fluffysmom]

Oh, I just got back from Maui where I spent 17 glorious days eating lots of mahi-mahi.  Makes me wonder about the hours I spent in the ER yesterday with abdominal pain...

I've had neurological issues for a year or more so I don't think they're related, but you definitely gave me something to think about!  All the information on all the different kind of fish to eat, and I've never heard of Ciguatera toxin.  I've eaten ahi, mahi mahi, opah, and others I've forgotten from Hawaii to Mexico.  I don't normally eat much fish, but when I can get truly fresh caught fish, I love it.

Good luck in finding the right doctor.  That can be a challenge with more simple and straightforward, well-known illnesses.

take care,

Kathy

[fortywhat2]

Wow, kinda makes you wonder what else we are picking up thru the foods we eat.
Well wishes!
Debbie
~live as if all your dreams came true~

[sllowe]

Thanks, Todd.

Were those test negative?
ttys,
-Shell

[Todd36]

Unfortunately, if I am dealing with Ciguatera poisoning there isn't a whole lot I can do.  Like fish, it also bio-accumulates in our flesh too and the symptoms have a tendency to wax and wane over time.  If I am dealing with it, time and staying away from eating more seafood is probably the only "cure".  I'm in the process of locating a doctor with experience dealing with Ciguatera but it might be a challenge.

The testing that I've had thus far includes the following:
Lots of blood work (investigated vitamin deficiencies too)
Lumbar (Dec 08), C-spine (Jan 09) and brain (April 08) MRI
Brain MRA
EMG and a NCS
Back and chest x-rays (April 08 and Dec 08)
Endoscopy (for abdominal pain)
A ton of bedside neurological exams

Thx,
Todd

[doni54]

Hi Todd,

How interesting, I've never heard of this.  I hope you find the info you need to get your dx and I hope this is the problem and can be fixed post haste!!!

Best of luck to you, and don't eat the fish!!!

Take care,
doni

[sllowe]

Hi Todd,

Wow, isn't that something? I'm glad he was so informative.

So what is the resolution to this, if it is the fish you consumed?

If you can Todd, remind us of what testing you have had done so far in this journey.

We need to know more about mimics that is for sure.  Did he mention a test for this?

ttys,
Shell

[Lulu54]

Todd,
Wouldn't that be a wonderful answer to all your physical woes?  I'll hope you find an expert  that can help with a diagnosis.  I recently found you can ask the lab scientists questions through labtestsonline.org.  You might drop them a question and see if they can point you in the right direction as to what tests to request.  If you can't find the link on their page drop me a note and I'll go find it for you.

Have a swimmingly good day,
Lulu

[opie74]

AGGAH!  I practically live off fish!  I live on the Gulf Coast.  As far as I know, our indigionus fish are fine.  Thank you for the warning!  

Keep us posted and I am going to ask my local marine biologist Dr. H if he knows of any of it around here.

Best wishes!
Opie