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KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 11:42 AM (GMT -7)   
Hello:
 
I have posted on the lupus, Fibro, lyme and MS sites..because I'm lost.
 
I have had issues with my muscles and joints and all the weird things in between since 1998.
 
I was convinced that I had MS for years, and after seeing several neruorolgist I and being told that it was fibro, I accepted the dx.  My symptoms are:
 
Muscle pain (achey) pins and needles sometime , weakness (in L.leg at times), twitches (even my lips), tremors, shakey muscles (when walking).  One day my gums was hurting (it felt like my teeth-sharp pains) for about an 30 mins.
 
My insides trembled one night (weird)
 
Joint paint and popping (no swelling)
 
Tongue, eye, ear, nose, head and facial pain (aching and burning)
 
Dizziness: balance coordination and unsteadiness
 
Forgetful and short memory lost (and then I say oh yeah I remember)
 
Gerd- which was causing sleep apnea
 
Weak swallowing muscles (no choking) and soreness inside of throat/espohagus when I have flare... had barium swallow test and upper scope.. (basically normal).  ENT say spasms from refulx (??)
 
 
 
Recently: I noticed my hair thinning- I'm not sure whats going on..I'm not sure if its because I was trying to be a kitchen beautian:+0.. I permed it about a month ago.. was not coming out then (not that I noticed).  It does appear to be over processed looking..  but it most bald in the back of head (boo hoo).
 
TEST: MRI's 3X (negative), CAt scans (back too) , emg 1x, evoke poteintal (twice),
Many blood test:  ANA 1:60, sed rate 7, dsDNA (?)-negative. General blood test were with in normal range.
 
Was in the hospital 2 weeks ago for 3 days, for dizziness etc..saw rheumy, neuro, ent and PCP.  No dx, everything was okay..except the ANA.. Rheumy doubts if its lupus (say I don't fit the criterias) , neuro say take Cymbalta. Was released with rx for mortrin and vicotin. 
 
My PCP took blood yesterday to test for lyme and b12 etc. and other stuff not sure what. Sceduled for EMG on the 18th..(starting all over).  over, and over and over....
 
I only feel bad when/right before it rains/snows or the humidity is high.  The summer is my best time and when I was pregnant.  I felt great. Working in the yard and jogging etc.  It like the sun re-energize me.  I have been going thru a flare now for almost a month!!! Was off work for 3 weeks, went back for 2 day and took off today before the holiday.  My eyes hurt so bad.  I had them tested before..(fine).  Its like I'm inflammed..but not showing on tests.
 
My spirits are getting really low..waiting and constantly going to doctors and ER only to be sent right back home.    I had one doctor look at me and said WOW when I explained everything (I got a new doctor!!).  I have flares before over 10 years..but it like this time is worst.  My mom looks at me like I'm crazy and says I neve heard of someone going thru what you are going thru.. you need to get back to work it may take your mind off things.
 
Nobody understands- nobody..except for members on this site!! 
 
Can anyone help me make sense of whats happeining to me?  I feel like members here sometimes give better insight than doctors.  I'm not depressed yet. but I'm worried and anxious...trying to fight becoming depressed.
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 11/26/2008 2:01 PM (GMT -7)   
With not one but three clean MRIs and your love of summer it appears you don't have MS. Most MS patients do not tolerate heat well. Have you posted in the Lyme board?
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/26/2008 4:12 PM (GMT -7)   
Hey KE08

I would agree with Gretchen here....seems unlikely u have MS. Do go post on the Lyme board if u have not. It could be a number of things, but i'd think Lyme would be a good next place to look. Best wishes friend. I know limbo is pretty tough, esp with u'r symptoms. Please let us know how u'r doing.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 11/26/2008 5:27 PM (GMT -7)   
Thanks Rhonda & Gretchen!((hugs))

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 11/26/2008 8:57 PM (GMT -7)   

Hang in there KEO8,

Let us know how you are doing. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Minotaur
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/27/2008 5:18 PM (GMT -7)   
Hi KE08, I feel your frustration, as I am too waiting for a diagnosis whereas I've not really started the testing phase, it's the doctors I'm waiting to see!!

This might seems like a long shot to you but it's something I've come to learn a bit about and realise it's not that outlandish. You may be suffering from those things you mentioned and / or migraine. Not the common migraines but ones like MAV, Basiler, complex etc. I have a migraine that lasts all day everyday but I get no pain though that doesn't mean others don't. You get a full spectrum of symptoms. Just a possibilty for you to consider.

Hope you feel much better soon and receive some answers....

Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 12/1/2008 7:52 PM (GMT -7)   
KE08,

Have you posted on Fibro about all of this. I have most of the same symptoms that you have described, and it took 2 years before the doctors informed me that it was Fibro. It's very hard to get a fibro dx as there is no one test to run for it. It comes down to ruling out everything else that could be wrong and have everything come back as normal before they will say Fibro.

I am in a strange situtation as I have both Fibro and MS. My daily life is figuring out what illness is causing my pain that particular day. I hate to say it, but it sounds like you are in for a long road before you get an answer. Keep your chin up and you will find your way through all of this.

Heather.
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  none at this time
 
 


Arfanna
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 12/2/2008 5:06 AM (GMT -7)   

Can I ask a really random question?  But do you have amalgam (metal) fillings in your teeth? 

Its just alot of your symptoms I have seen in people who have "leaky" fillings that are poisioning them.  THis is not to be underestimated as they have been extremely ill and lived for a long time worried about what they are suffering from and Doctors have never come up with an answer...

As soon as they have had their fillings removed and replaced with white no toxic fillings symptoms have disappeared

I appreciate this seems such an insignificant thing compared to MS etc but some of your symptoms rang very true with a number of people I have seen

Dont go rushing out and getting your fillings changed - get them tested by a reputable homeopathic dentist who will be able to tell if its necessary or not

A xx


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 12/2/2008 7:15 AM (GMT -7)   

Ok this is just irritating.  Are you going to post about diet pepsi too?  I get so sick and tired of people telling us we don't have MS.  NO THIS IS NOT BAD FILLINGS.  I have had excellent dental work my whole life.  I have NO silver amalgam fillings and I have not for a really long time..............THEN I was diagnosed with MS. 

Please refrain from posting if you are going to question the existance of MS.  This is a board of SUPPORT, not a board of "maybe you don't have MS and it is just..........."


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Arfanna
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 12/2/2008 8:00 AM (GMT -7)   
Gretchen1 I was certainly not belittling MS but offer support to help someone (KE08) who sounded like they were looking for possible answers to very traumatic issues in their life that seems undiagnosed by conventional medics. Re-reading the posting MS seems to have been been ruled out.

I and many friends have been plagued by the inadequacies of the medical fraternity who have offered "its just one of those things" as a supposidely adequate diagnosis for some life threatening problems.

I have learnt its necessary to explore not just the physical but also the environmental, mental and spiritual aspect of life and wanted to explore an option that maybe hadnt been considered.

There is really no need to be so aggressive as it was not addressing your issues Gretchen1 but those of KE08 who sounded like a little support from a stranger who was willing to spend a little time reading the posting, considering it, doing a small amount of research and offering a possible area for further investigation.

I hope KE08 took it as such with the intention and kindness it was offered.

KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 9:47 AM (GMT -7)   
Hi.. Everyone I appreciate the support. I was not offended Afanna by your post (thanks). I'm looking for answers and opinions to help me help the docs figure this out. I appreciate your support too Gretchen1. I have had testing for MS and all negative. I'm really frustrated (cried at my doc appt today). Lupus and lyme test came back negative too..and I don't fit any of the criteria for them.. Doc think its firbro..except the tongue and swallowing issue..so she drew MORE blood to check for muscle disease..but so far muscle enzyemes are good etc.. She feels after doing a few more blood test FOR THE MUSCLES..that she has ran all the test she can think of. MRIS, ENVOKES POTENTIAL, CAT SCANS, (EMG 5 YEARS AGO-GETTING ANOTHER ONE AND A BONE SCAN NEXT WEEK)..REPEATS OF TEST..

SHE IS REALLY A GREAT RHUMEY SHE CAN ONLY DO SO MUCH:+(.

BUT thank you guys every last one of you!! This has been a very support forum ((hugs)).

Arfanna
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 12/2/2008 1:21 PM (GMT -7)   

Hi KE08

It sounds like you are really testing the medics!  Keep persisting with them....your comment re.  you dont fit the profile for some of the diseases you are being tested for is the reason you have to insist....I have heard it SOOO many times.  THe patient doesnt fit the expected profile of a normal patient....it means NOTHING.  

You know yourself best if something is wrong keep pestering the doc! 

Something I am sure you will have investigated but in case you havent...Have you seen a homeopath / naturopath?  You can have something called a health detective test which investigates all sorts from parasites through to hormone inbalances...mineral levels etc etc.  They test subtherapeutic levels which the docs tests just arent going to pick up.  If nothing else it might help rule out a few things or point you in a new area of investigation.

I really wish you all the best and keep smiling xx

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