Results of a long journey

[LisaJF]

I feel compelled to inform everyone of my last Dr.s appointment and its conclusion of my long journey in attempting to find what was going on with my health throughout the three long years. A forum, that is comprised of compassionate and supportive people,  I do not think I would of held onto my sanity throughout the ups and downs of the diagnosis process and the symptoms that had debilitated, incapacitated and wreaked havoc on my personal life.

I received a call yesterday by the MS Specialist with the results of my lumbar puncture and everything that I had been going through for years was hanging on a  frail thread of an answer.  Although there was a few out of range values, there were no oligoclonal banding in my CSF or serum.  There was no monoclonal banding of the serum electrophoresis testing.  My MS Specialist concluded that, "MS can be wiped off the plate entirely."  This is a doctor who said, "I'm not impressed with your lesions.  They do not look like MS lesions."

I can't help to say that a big part of me was relieved and did express to the doctor that although I am happy to hear I do not have a progressive demyelinating disease, I am still bereft of the causes of what has been going on with my health from chronic fatigue, paresthesias, pain, balance and coordination issues, blurred vision and sometimes cognitive dysfunction.  

The doctor's comment was to me that I could possibly have chronic fatigue syndrome and that I should look into seeing a specialist in that area.  However, the doctor did state that according to the CDC's diagnostic criteria, that I may not qualify. I asked "who" I could go to or someone the doctor knew to refer me to and there was no helpful answer.  

After I hung up the phone, I cried.  I cried because I am no farther than I was three years ago and the mere fact that I would have to start "ALL OVER" again.   The things I've lost along the way grieved me, yet, somehow I managed to pull myself out of that grief and push forward and tried to live my life as best as I could.

I even contemplated on going back to work by going to get my recertification of my BLS and went to an interview for a position. I submitted my cover letter and resume.  During the time of waiting to hear from the facility that I applied to,  once again I fell into a health crisis that did not allow me to go hopping on the job hunting bandwagon and instead, laid flat on my back or became a couch potato for weeks.  I could barely stand to hold my weight or go up my stairs without crawling 3/4 of the way.

Of course, I googled certified CFS doctors in my area and none to be found.

I'm relieved, yet devastated at the same time.

Thank you all for the years of support, listening and most of all friendship.

Lisa

[meagh00704]

I ahve been suffeering for years with what my neuro says are cycles.  I have 7 new brain lesions he said ;ook ;ike MS and then did the spinal.  The spinal came out clean, but I did further investigations into a spinal tap being conclusive in finding and diagnosing MS and it is not always accurate.  I even saw a MS world renown (spelling) specialist and she said she can not rule out or diagnose my symptoms as MS either.  Well I am not giving up, I refuse to suffer anymore and I will go to every docotor until I have found what it is I actually have and if a doctor plays me off with some trivial answer I will find another one!  Maybe I have MS and Maybe I don't but all my doctors see the swelling, the neuropathy, the fatigue, the gait and the lesions, not to mention alot of other symptoms that have grown worse over the last 10 years!

[LisaJF]

Wonko:  I am grateful for your well intentioned, well thought out response to me and your words are so eloquently put together with compassion and understanding.  However, I've been tested for Lyme via serum (ELISA) over the course of the years and twice in my CSF Lumbar and each and everytime my results are negative.  I can confidently state, that I don't feel that it is Lyme at this time.

Again, thank you for your heart-felt response and taking the time to write to me.

HVAC:  I realize you have gone through decades of not knowing and just dealing with whatever you had for a long, long time.  You have displayed courage, strength and fortitude in ways that set an example thatmany people should adopt -- living life and not taking a day for granted.  Even with your stage IV cancer, I am amazed the outlook you have and stand strong.  As a child I was always told that you can either rise above and do the best you can with what you got or allow it to consume you, cripple you and miss out on the important things.  People like you are an inspiration.  Thank you for your response -- it means a lot to me.

Corriel:  Yes, I do have sleep studies here where I live and thank you for mentioning that.  Actually, I'm making an appointment with a Rheumatologist that I saw about a year ago and go from there.  Perhaps, he can retest some things like my ANA, ESR, CRP, and antidsDNA again due to the fact that it was equivocal at one time,  

For now I think I'm just going to get the "right" medication(s) for my symptoms if they exist.  Motrin 800 mg  helps with severe diffuse myalgia and joint (hip) pain (feels like its dislocated, but I know its not LOL), but not completely.  My muscles get to the point of hurting so badly that I can't tell if it's burning or having spasms or just plain old sore.  Also burning pain along with tingling and numbness sensation in select fingers on left hand and select toes.  I've taken Neurontin on a regular basis to see if it worked and it really didn't.  Then I went to taking it whenever it happened.  The only thing it did for me is make my ataxia worse.

Anyways, that's my plan for now. See what he thinks, what he comes up with or who he can refer. Thank you again for your input, it is greatly appreciated.


Johnniebear:  How could I leave this place? I've been here for years now :)  I can not disregard friendships I've made along the way and also feel like I'm contributing and being useful. Shucks, you're all stuck with me. :D


JJ: Thank you for your response and taking the time to write to me. It means a lot that you did so.

Yes I am very happy to have heard that it is absolutely NOT MS.  The question is, do I think the doctor's statement is finite? No, I do not.

On two separate MRI  reports with comparisons, it has stated that I had increase of lesions and the last one I had in June of 2013, stated that I had a T2 hyperintensity in the lower aspect of the corpus callosum.  Although lesion counting isn't the thing to do and MS is a clinical diagnosis along with supportive tests, I will not dismiss it entirely as the doctor did so.  Let's just say I'd put it on the back burner, but know that it is most likely not but never say never type deal.

I agree with you when you said that being ok with everything no matter what it is (named or not) is the best route to go.  I'll deal with what I have when it happens and go back to not chasing a diagnosis.  I took almost 1.5 years off from it and dealt with symptoms as they popped up and I think that is what I will continue to do.  Maybe something will pop up along the way, maybe it wont.  But I will refuse to let this get me down at this time.  

Surely, I was disappointed (again) without the name of whatever it is causing my symptoms and it took a couple of days to come to terms with that, but I'm good now.  Onward and forward right? :)

Thank you again JJ.

Yorkieville (Sheila):  Thank you for your response and at some point, I believe whatever I have will be discovered.  Just not in the timeline that I would like it to be. :)  I could never leave this forum nor want to.  I hope that whatever I respond to is helpful to those I have written to or at least show that I care and want them to be the best advocate for themselves.

((HUGS))

Lisa

[yorkieville]

Lisa,

I truly understand, your frustration, your sadness.

I lived in Limboland, in extreme nerve pain for 6 long years before my dx of MS.

I was relieved, (thankful) to finally have the dx.

I still live with the nerve pain in my spine 24/7.

My best advice to you is not to give up in your search for a dx.

My former Neurologist actually told me that I was going to die, before anyone figured out what was wrong with me.

I wasn't willing to accept his opinion.

Please stay in the forum. I don't post often, but the member of this family have walked my walk with me, and kept my spirits up.

I'll pray that you get a dx soon.

(((HUGS)))
Sheila

[supermum_ms]

Huge hug for still not having an answer!

I think you could look at this in more than 1 way, it's good news because  your MS specialist is so confident, you don't have MS or it's bad news because you didn't get dx, and even though it su_cks big time i hope you choose the positive.

You know a lot more than when you started this journey, no starting over but a continuation of, because your dx journey is not over until the answer is found. At this moment in time, you have a list of conditions that have been (with confidence?) ruled out............so what's left? hmmmmm you should also have a list of diagnosis to account for most, if not all of your sx's and together that should help point towards something, right?

You are a puzzle with a missing piece or two, getting its name right is just one part of the bigger picture and I really dont think that is enough to make anyone feel content or acceptance or peace or what ever term you use. What ever you call that feeling, its still something to aim for because no matter what the dx turns out to be, being ofay with everything that you live with (named or not) is in my humble opinion, still a very important piece to find.

Hugs............JJ

[johnniebear]

I completely understand your emotions of not getting a Dx so that a treatment plan can finally be given.



As fellow Limboland since 2009   My MS neuro says I have  demyelinating disease however after all these years won't rule MS in or out ,  there are  way to many of us in limboland.


   I thought about dropping out of this forum, our dear friend Laura encouraged me to stay and contribute when I can and keep asking questions.  

        
    I  encourage you to stay,  make me a promise that you will stay.




THe support  and understanding from this forum has keep me  sane



take care
John

..

[Corriel]

Is there a place near you that does sleep studies or testing for sleep apnea?

That might be a starting place to find out about CFS help somewhere near you and maybethat could lead to something?

You have every right to feel discouraged but don't let it consume you because you need to get some answers.

Hang in there!
Corrie