Still wondering..but finally seeing a neuro.

[mustangdad]

First off, hello to everyone, I was very impressed by the professionalism and warmness of this forum.  Which I suppose is one of the reasons I chose to register.  Hopefully I'm posting in the right area.  I'm sure everybody is used to paragraphs upon paragraphs of information I'll do my best to keep this to the point!  I'm a 33 year old male in great physical shape, I work full time as a paramedic and I have wonderful wife along with a perfect little almost 3 year old son.  Now....after a trip to Mexico about 11 years ago I came home with a pretty severe bacterial infection this was chalked up to a possible parasitic infection, which was never actually found.  This was treated with cipro and flagyl.  Since then my body has never cooperated the way I demand it to. For the past say 6-7 years I have been convinced I have MS.  With a fairly complex paramedicine background I'm comfortable venturing in the world of anatomy and physiology.  Thus my admitted self diagnosis :)  I recently came upon a new family physician and she agrees this deserves investigation...Finally!  I have an MRI in 2 weeks then a consult with my first neurologist.  My symptoms: severe fatigue, heavy limbs, at times muscle weakness and muscle fatigue, numbness / pins and needles, GI disturbances, back pain, heat sensitivity, occasional difficulty swallowing, acid reflux, sexual difficulties, the scariest of all 2 episodes of visual disturbances in my left eye lasting about 4-6 hours each, it was like somebody put a coke bottle in front of my eye the primeter being very blurry and the middle of my eye only seeing a large black dot.  These symptoms are begining to greatly affect my everyday life especially the fatigue.  It's enough that we have a 3 year old boy and I work full time never mind contending with this damn fatigue etc.  Not sure what I'm looking for in response to this but I know for sure this is right place to share information and listen to what others have to say that know for sure they have MS.  My wife's aunt has MS and she has been wonderful to talk to.  She too is convinced I have MS.  I begin my adventure in a couple of weeks starting with the MRI.  Thanks for reading guys........-C-

[Nancy T]

Good luck with your neuro visit. I hope you get some answers.

However, just a word of caution from a ten-years-undiagnosed person with some red-flag symptoms of MS (Lhermitte's, bilateral trigeminal-nerve symptoms, widespread paresthesias, though lacking others such as ON): you can have all the symptoms in the world and not end up getting a firm diagnosis of ANYTHING. If you have read this or other forums for any length of time, you will see that this is VERY common.

Many people set out to neurologists and other specialists with very reasonable hopes and expectations of getting a diagnosis or at least some progress toward one, and come home with nothing but frustrating non-answers (or, worse, implied or explicit labels of anxiety, depression, medical student's disease, etc.). The truth is, some people NEVER get a firm diagnosis of anything. In our science-oriented world, that seems unacceptable, but it's a fact.


So, please prepare yourself for the possibility of no firm answers. Do not get your expectations for a diagnosis up too high. I say this with all possible sympathy for your situation (I've dealt with unexplained dizziness and achiness for decades, and neuro symptoms for ten years) and with hopes that even if you don't get a diagnosis, you get some serious help for your symptoms.


Lulu has given you great advice, too!

Have you and your doctor considered whether the temporary visual loss could be due to a migraine event (headache NOT necessary) or a TIA? Google "ocular migraine" if you haven't investigated that idea yet.

Good luck!!

Nancy

[mustangdad]

Great responses, all very valid points.  LuLu54 I'm very calm and at ease with this upcoming adventure. It's time I get some answers and a label to what this giant in the road is for me.  Without a dx. or label there is no plan of attack and people around you have a harder time understanding.  You can't power through something when you don't know what it is that your battling.

[supermum_ms]

Ok, if you cant pin it down, try looking at the fatigue periods you've had, see if you can work out what happened with each episode. eg

Jan 2007, fatigue 3days, left thumb numb, constipated, left eye pain, numb left thigh
May 2007, fatigue 9 days, left thumb and finger numb, constipated, left eye pain & blurred,
Feb 2008 etc

It might be easier if you start with now and work backwards, write down when this episode began and what you experienced, then when the next episode happened etc. I'd ask your partner what they remember, sometimes they notice things you dont. My mother noticed that i wasn't just having balance issues, i was also having a bit of foot drop which was making me trip, i'd not noticed because i was too focused on trying to get my legs to walk.

When i'm fatigued i also have brain fog and word searching issues, last year i lost ALL nouns which was really weird, got most of it back but i'm still aware its not like it use to be.

I second Lulu's hint about not letting on you think its MS and know a lot, i think thats a red flag, stupid we know but it would be best to keep that to your self.

Cheers.......JJ

[Lulu54]

Greetings Mustangdad and welcome to our community.  This place is full of very educated and compassionate people that are more than willing to help you make sense of this.

You sound very calm about this, and I'm glad to read that in your words.  There are so many things to have worse than MS. You don't say how long the Aunt-in-law has been dxd but treatment has really changed and advanced in the past 20 years.

The outlook for today's MS patient very positive - something like 85% of us will remain ambulatory and live a normal life span.  That means if you have MS you should see that little guy grow up and much more.

A word of caution - don't let any neuro think you have researched and self-diagnosed your condition.  That is just about the fastest way to be shown the door and placed into limboland.  Add that to you being a paramedic and many neuros are going to be looking at you with a slanted view already.  Don't feel singled out, we understand nurses get the same treatment!


Your symptoms sure sound neurological to me, but I'm no doctor.  It sounds like many of the mimics have been checked, but there are still more to rule out.  One that you are missing that jumps out at me is Lyme disease. some areas of the country are greater concentrations of this disease than others, but those critters seem to be everywhere.  

We do have a health page on mimics - you might want to read that one, too.  It is located at

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Mimics---Part-I/show/375?cid=36

The infection post-Mexico may be the culprit in setting off a major reaction in your body - we know often MS patients are dx'd after they have had an infection or trauma. Probably that is so long ago that its not going to ever be fit into the puzzle by the doctors.

Are you seeing a neurologist who specializes in MS?  

Be patient with this process - I know you have already waited a long time.  MS is a diagnosis of elimination.  Everything else has to be taken off the table before it can be named MS.

Stay in touch and let us know how we can be of help.

be well,
Lulu

[cassrox]

At least your new GP listened to you and took your concerns seriously. Hopefully now you can start getting some answers.

Best of luck!

Cassrox
Limbolander

[mustangdad]

Thanks for the reply.  Pertinent negatives have been looked at and ruled out to this point.  Lupus, infection, mono, rhumatiod arthritis etc.  It has taken this long as it has always been chalked up to IBS, as I undertstand a fair number of MS pt's have been told prior to diagnosis.  

My previous doctor immediatley blew off the idea of MS being the cause of my symptoms.  My current gp was instantly open to the idea and agreed to promptly have this investigated.

The frustrating part is I can't pinpoint one specific time in the last decade where I can say "this was my first symptom."  Other than the onset of all the above after the infection post Mexico.  Fatigue is definately my biggent monster right now.


Thanks for the heads up about breaking the posts up !!

[supermum_ms]

Hi and welcome!

Its good your finally getting this looked into, can I ask why such a long time and if you've been evaluated for all the MS mimics? I imagine in that time you've been trying to get answers but left in limbo land like many here, of which i'm one. Have you read the health pages yet, see top right yellow icon, lots of good information there.

You might like to consider preparing for your neuro visist, a good idea is to write a time line of symptoms, which part of you has what etc, age or yr each attack happened and sx happened that time. Did you ever have your visual disturbances looked at and dx, that needs to be included with or without dx.

I cant say one way or the other if you have MS, things you list are sx of MS but they can also be Lupus, lyme etc it might be helpful if you tell us a bit more, if your comfortable doing that please break up your posts, some members have sight difficulties and breaking up the posts makes it easier to read :-)

so again welcome!

Cheers.............JJ