When do you give up the search?

[jinkies5978]

This has been going on since 2006 with a break between 2008-July 2011.  I returned to the best shape of my life, even ran a 10 mile race.  It's the same old story...numbness, tingling, pain, twitches, fatigue, GI issues, heat intolerance, alcohol intolerance, gait change, balance issues, memory issues, hyper reflexes in my legs (and then randomly yesterday, no reflexes in my arms) etc.  Both "episodes" occured within the first 6-12 weeks postpartum.  In hindsight now, I believe the PPD I was diagnosed with after my 1st pg was probably just an episode of a lesser degree.  The symptoms between the 2006 episode and my current symptoms have some similarities but some differences as well.  I have no lesions on my MRI...in fact, my neiro describes my MRI as pristine.  I don't know the strength of the mobile unit her office uses.  I need to find that out.  She really doesn't believe it is MS but she is doing a LP to appease me.  She thinks I suffered a SCI after a fall in 2006 when my symptoms came on with a vengeance...mainly abdominal pain (that I would describe exactly like the "MS Hug") and bowel/bladder issues.  Although no imaging shows any cause for that either.  When I look back, I can say the heat intolerance and alcohol intolerance started in my early 20s and the fatigue came on after my first pg but resolved several months later.  

I know I'm jumping around but I guess my question is when do I throw in the towel and just treat my symptoms with no answer.  You name it, I've been tested for it.  My pain mgmt doc has decided this week to redo all of my bloodwork that was done (in another city) 6 years ago so I am anxiously awaiting those results.  I'm thinking if those come back clear, I just wait until something "grand" happens.  Is it possible tohave all of these symptoms over such a time span and have a "pristine" MRI?  Maybe I am actually crazy?!?  That's how I feel.

Sorry for the stream of consciousness of this...I was trying not to tell the long drawn out story but I guess that really isn't possible.  Thanks for any insight, advice, and encouragement, in advance!

[skeetelmore65]

Hello guys..I just happen to look in the MS forum to see if anyone had posted,anything, even remotely close to me and Jinkies, u hit that nail on the head..so to speak.:D
I can relate and I feel ur misery. I  think, I have found "home"...here.:)
IT is so hard on ALL of us, when we have to search for our own answers, these days, but u have to because there are so many different diseases(disastors), syndromes,etc.
Jinkies, u listed every single one of my complaints, in ur first post..

  "It's the same old story...numbness, tingling, pain, twitches, fatigue, GI issues, heat intolerance, alcohol intolerance, gait change, balance issues, memory issues, hyper reflexes in my legs (and then randomly yesterday, no reflexes in my arms) etc."

So, here's my story, as brief, as I can tell it to u.:)
@ those hyer reflexes, in ur legs....I really FEEL u..u said it!...THAT'S the word..HYPER FLEX, because my legs, they kill me everyday with this aggravating pull and tightness. It is like I am continuously working out and I am laying in the bed. IT is likeThe pain is so dreadful and rides u all day,no matter what ur doing, but I don't have to explain that to u, for I am sure u do understand.
I do want to ask any of u, if ur knees give u any problems? Mine hurt mostly, just in the joints...over ALL of my body. My knees hurt, ALL of the time and have locked up a few times, to where I had to pull the leg straight. I thought, it was RA, for a while or Gout, but haven't got any positive testing yet, to back that up. I have been to one Rhuematologist and she never even touched me and just told me, I guess, by what I explained that I had "myalgias". Oh...ok, so that is suppose to be my answer, without even touching me?? I am seeing an Oncologist and a Cardiologist now, just to rule them out. I do have vibrations that I get in my chest and it feels like it goes all the way through. I don't have it everyday,  but it scares me when I do have it. I have flushing on my cheeks(face)..hehe and it is high up on my cheeks and looks like just a nice spot of rouge on each cheekbone. I also get, warm flushing feelings in my left shoulder and arm and that makes me think it is my heart, for it feels like warm blood rushing down my shoulder. I do have some chest pains, but not a lot. One time, it felt like someone thumped my heart, just like someone thumps ur ear. My cholesterol might be playing a part there, I don't know?

Today, I had a feeling that was somewhat new. It felt like the point, of a pair of sizzors...stuck into my calf and then, was pulled downward to my heel. YOWCH, I am so tired of PAIN and never know what to expect next, from day to day. So please tell me that if, it is MS...that it does get some better, just some...anything is better than this. Maybe, after getting dx'd and taking the right medication, it will make the difference. Fingers X, but then again...I don't want to be dx'd with MS,.I just want an answer.:(O

Also. I wanted to mention, that I can't stand(legs hurt bad behind the knee mostly, then again it is the everything in the leg that hurts). I can't sit(the worse)for long periods...let's say 5 mins. or I will be sliding to get straight. I have to lay in bed mostly and elevate my legs.(vibration setting on bed, is
constantly on)

I had a surgery in my neck,(C5-C6)ACD&F spinal diskectomy, back in '06. So, I have been thinking most of this time, that the surgery was the whole problem here, but re-thinking that notion..now,complicated..I know that.I have too many symptoms and I don't have to be doing anythng, to have some kind of episode.
.
The worse thing, I go through is I can't use my muscles AT ALL and my shoulder will pop out of place and crack, so does my sternum.
(collar bone)
I don't understand. IT is scary, when something definitely has a hold of u,
but Docs aren't solving this issue. I am so afraid that the Chiro that told me that I had a srew on top of a nerve, could  be right, for he stated, "If u don't get the plates taken out of ur neck, then u r gonna lose the use of ur arms and legs." It has been 3 or more years and the NS that did the surgery won't even consider looking further and I don't understand. I don't know what t am I suppose to do and where am I suppose to go? He just dropped me and won't even see me.
I think, it is because I was having to go see him too much(saw him 9 out of 11 mos. the first yr.of surgery) , but I was working 60+ hrs. a week and needed my health, my sleep, etc.
My right bi-cep pain, was to where I couldn't use it without extreme pain and it never hurt, before he done the surgery? He said that it was my C5. Okay, where? Ah, in my mind..thinking, "that is where he did the surgery?:"
My brain feels like it has been experiencing mini-seizures.(like a record that skips) I already have loss so much time stuck in this bed...now and am getting so depressed from this.
I keep pushing forward, the best that I can.I am really weiry and frustrated @ ALL of this. I know, it is something more than Fibro...I just know it, for I am a strong person, but this is hard.:((

kept going to see Neurologists(NL), ths whole time...in search of good one, that could answer my questions and get me better, but all that they were doing, were piling up dx's, upon me. This is what they found:
DX:
             Chiari Malformation(CM), but they're not sure of that dx. Now,they say it is considered a Tonsilar Ectopia.
             Venous Anomally(VA) It hurts back there and I never hurt in my head growing up. I must say that I have never seen that term before and no one told me, when or as I was growing up that I had one. This one worries me..
            DDD: Cervical, Lumbar, Hip/Joint
            Spondylosis
            Cervicalgia(another name for Pain)
            Myofascial Pain Syndrome
            T8-T11(T10-T11 with Hypertrophy)
            Vitamin D deficiency
            Pre-diabetic
            High Cholesterol
Past dx's:
            Diverticulitis
            Endometriosis
            Bone Spur removal of left Jaw
            Allergies(Demoral)etc..
            Sinus issues
            IBS...etc..
Surgeries:
            Bone Spur removal over left ear.
            ACD & F spina diskectomy(C5-C6)
            Hysterectomy
            Laporoscopy(2)            
Failed Testing & Procedures:
            Myelogram(spinal tap headache for 7 days. Had to have Blood Patch)
            ESI (Epidural Steroid Injection) Doc hit me in my Thoracic. Made my hands and feet NUMB and IT has only progressed and moved on into my limbs) Wondering is this couldn't be the problem that is causing my muscles to absolutely kill me,everyday...now.            
      
Gosh, when u spell it out..no wonder I am in misery...hehe..Not funny hey?
I felt it was the surgery.though.and am not going to lie, because I do have severe pain in my neck. I still do, at some point think, it could be that...But the past 2-3 yrs., I have been in utter misery, from getting a whole lot more symptoms that have been added since my surgery!

SORRY IF I REPEATED ANYTHING. I USED COPY.: P
God Bless u guys. Take care. Love.:)))<3 Karen

Ps.The Doc(NL) that saw a place on my Thoracic...that he couldn't explain.
Could this be associated with MS. He said that he, didn't know what he was seeing. In his words, "It is out of my area of expertise"...and with that,the other Docs haven't even looked at it, but IT hurts back there too. So sorry, this is soo long.<3
I hope and pray the best...for u guys.:)  
  

[jinkies5978]

Thanks, Mary.  I appreciate your comments, thoughts, and encouragement.  It's one of those things that I know I'm not crazy at this point, I'm just wondering how long it is going to take for everyone else to figure it out.  I can reach all the way back to my college years when my heat intolerance began.  I believe that could have been my first symptom.  My drive for a diagnosis are my 3 young daughters...8,6, and 1.  I want to get on meds as soon as I can, if this is MS, so that I can be as capapble of a parent for as long as I can for them.  

Thanks for the info about the LP!  I'm still waiting for that to be schedule.  Hopefully I'll get that call this week...if not, they'll get a call from me ;)  After that I think my next step will be getting a second opinion from another neuro.  I always say a 2nd and 3rd opinion are never bad so I need to move in that direction.  I feel like my current neuro is not seeing the things I see "in hindsight".  I think she feels like I am stretching but it is almost like it is all finally becoming clear.  I've had so many "symptoms"  that have been unexplainable and now, in an MS light, they make sense.  My mom even broke down the other day and told me she did some research and she thinks I'm right...my mom never thinks I'm right! Ha! ;)  

So, I'm glad to have found this community for info and support.  I will keep you all posted and I wish you all more good days than bad!  

[SarahL2491]

Can you elaborate more on the blood tests before and after the LP?
I am having one done and my neurologist does his own at his clinic and I want to be sure of my facts before I "stand up" for getting it right.

also

is there anyone on here who has had an MRI WITH a pacemaker?  I am being scheduled for one of those (just of the BRAIN) and they tell me it can be done by shielding the wires and battery and with a cardiologist there.  I still feel "iffy" about it.  Any feedback from anyone?

[twopack]

An important point to begin.
Make sure your blood is drawn at the same time you have that LP done.  It's needed for comparison against your spinal fluid.  Otherwise the MS part of the test is useless.


Well, you have actually documented a pretty concise "stream of consciousness" for us.  It has lots of elements that speak clearly to a suspicion toward MS.  I'd think the episodes that occurred after each post-pregnancy period would be especially significant.

Once upon a time there were no tests for MS.  It didn't matter much because there were no disease modifying therapies and not much more than that to offer for symptomatic treatment.

Today there are several tests, just none that are definitive.  Nothing, not even the LP can give the final yea or nay for a MS diagnosis.  Guidelines are weighted toward the neuro exam and symptom history yet without SOME objective evidence very few will be diagnosed these days.

PPD as an episode of a lesser degree?  Interesting and you may be right.  Are you aware depression is so common in PwMS (people with MS) that it is considered to be a symptom?  

It's one of those things.  Lots of people with depression don't have MS.  Many PwMS don't have depression.  Some PwMS get depressed about living life with MS.  Some PwMS have a biological basis for their depression that is based in neuropathology.  AND if doctors can't figure out what's wrong with a patient based on tests and lab results they sometimes (mistakenly) diagnosis them with depression.  This diagnosis has been known to blossom into a self-fulfilled prophecy but it can produce lingering rage as well.  (Hope you can tell some of this is a little tongue-in-cheek.)


So, I am another of the members here who waited years for diagnosis to come my way.  You can read a summary of my story on my profile page.  My first MRI (back in 1990) was done in a mobile trailer unit that rotated between three hospitals from week to week.  It was crude by today's standards but managed to show evidence of a brain stem lesion.  Problem?  Doctors at the time didn't think it was possible and ignored the rest of my brain.  It wasn't until I dug up the 'films' for review in 2009 that a doc discovered other lesions were visible way back when.

I wouldn't rely on an open MRI or one done using tumor protocol in today's technological world.  I WOULD ask if your doctor relied on a report or looked at your images personally.  IMO, a neuro should know at least the basics of looking at an MRI of the brain and spinal cord AND be interested enough in the patient to do so personally.  A neuro radiologist is the specialist in a pristine brain MRI I guess but I don't think every MRI gets one.  Diagnosing often takes a combo effort.

I nodded my head in recognition when you said, "I'm thinking if those come back clear, I'll just wait until something 'grand' happens."  Ahhhhh, an echo of my words across the years....  Okay then, I'll just wait until I wake up some day and can't move my legs to get out of bed.  As it turned out, it was an episode of complete urinary incontinence after exertion in August heat that turned the tide (ever so slowly).

Also like you, I was hard on myself at times.  Sans diagnosis I had accepted myself as 'weaker' or 'less able' and finally 'too old' to keep up.  I would have liked a more respectable reason to explain my self-labeled 'deficiencies'.  It's almost funny that my limitations are considered nearly invisible now that I am diagnosed.  At least I give myself credit now for pushing forward toward normalcy as hard as I could for as long as possible.

Oh my.  Who has failed at brevity now?  Me thinks I've left a trail of the unconscious behind, in the wake of my reflections.  I’ll cease then.

Let us know how you are doing and what you find out.  I made it through my undiagnosed years with OTC remedies, supplements, herbs, tricks and luck.  I've stuck with lots of the same even after I added Copaxone.  What works works and I'm willing to share when I can.

Thanks for sharing.

Mary

[HVAC]

I thought when I was diagnosed I would get more respect from the Medical community and that is not always the case. My MS Specialist the last time I was in said you only have a little MS looking at your MRI from 2009. I have progressed I feel it and he says this! The pain specialist harps on anxiety. My PCP says now that you know what is causing the diaphragm spasms you can live with them. The list goes on and on. It all translates to they do not know. They know I have MS they want to help but they really are clueless as to what to say. I have learned to decide if they care. If they do I ignore the comment. I say stupid things when I do not mean to. Humans are human.

Take care.

Alex

[jinkies5978]

Alex, thank you! The hardest part is explaining to others when there is no clear diagnosis. I hate those looks of, well, if the doctor can't find anything wrong then maybe there isn't anything wrong...errrr!  But that is my problem, not theirs.  I need to get over that and know what I experience is true.    I am the kind of person who likes an "answer" but I am learning with neurology a lot of times there is no answer.  So I need to be happy with just treating the symptoms and making sure I have as many good days as possible...and be thankful for those!  I feel like it is what it is and someday maybe, if I'm lucky, I'll have a name to call it.  

[SarahL2491]

Alex, you inspire all of us!  So true, just treat me!  Call me what you want!

[HVAC]

It took me 44 years for a diagnosis of MS. Now my pain clinic tries to tell me it is different things than MS. I have many abnormal MRIs and, Evoked Potentials tests, LP, etc. At this point I just do not care what anyone calls it as long as symptoms are treated. The truth is medicine is still in its infancy. If it is MS it will manifest itself sooner or later. Yes it would be great if everyone got on a DMD but that sometimes does not happen like it should.

There are also weird Neurological disorders they really do not understand.

Some 1.5 T machines are fine. The software program is more important than the strength. Most MS is gray matter damage and gray matter does not show up on MRIs at this time.

Keep the faith. Sometimes like yesterday I have medical professionals say the stupidest things to me. I just politely smile. They just do not get it.

Like I said they can call my pain whatever they want as long as they treat it.

Alex

[jinkies5978]

Wow!  31 years!  And I think I'm crazy after 6...hats off to you!  I do plan to ask the strength of the MRI.  Once I read that the strength of the MRI matter, I definitely questioned the mobile unit's.  I am just know really starting to educate myself on MS.  For years I thought I was "healed" and now it seems I am starting all over again.  So much to learn and so much to ask for...

[SarahL2491]

I'm going to stir the pot and say I have misgivings about a mobile MRI.  Do you know what the strength was?  I think the LP is a good move on your part!  At this point, leave no stone unturned.

I know its hard to wait and so frustrating.  It took me 31 years from my first flare to my Dx.  I was one of the most frustrated people in the world to be around!

Keep us posted and good luck.............