Frustrated with Results!

[tjlmoo]

Hello to all, I just recv'd LP results from Neuro drs asst and ALL came back negative including MS panel that was done. I guess I should be glad, I think I am but then I'm not because that means no answer.Neuro does not believe it is Fibromyalgia and said he can not think of anything else.it could be. I have another appt with Neuro dr in April. Drs asst told me to log any symptoms new etc during this time.I guess I was just hoping to have answers and some relief with all the symptoms I'm having.Unfortunately by the time I had my first neuro appt. the 2 week flair that was the worst for me had passed, The next one was Jan 5 thru 9 of this year but not as bad as August.

I put my life on hold as far as my teaching asst position and sunday school teaching position because of all this, now I'm no closer to finding out anything and my job at the private school can not guarantee me my job back this next school year.  My husband is fine with that, but I'm not. I guess like my son keeps telling me, he wants his regular/normal Mom back and I sooo very much want my life back too!!

I should be more grateful like I'm always saying , since I do not have things/symptoms as bad as some.My symptoms or flares only got bad this past summer, prior to that it was just little things that would happen a day or two or sometimes longer but I just figured the flu or something due to it went away. I've had problems with my vision since 2009 but I thought was age except sometimes I'd have the 20/20 back. Numbing and tingling has been going on since 2010, cognitive things more so this last year. Unfortunately, I kept most of it to myself until finally last August when I felt like I was going to pass out and had pain behind my eyes so my GP sent me for a brain MRI. Few areas said could be MS, only one prominant! Cervical MRI,normal. Blood work for sugar, thyroid b12 all that normal. Except, for I've had a Vit D defficiency since 2010. I take 1000 a day for that.

Back in December I had sinus sx and had a cyst removed from sephnoid and I was hoping that was part of these symptoms, but NO!   I have gained almost 25 pounds since the summer due to all of this.My right side(numb, tingling,stiff sometimes, sometimes tremors in leg, especially after stairs and alot of walking, some balance issues,RLS at night in legs.
I know this is a lot to read. I think I'm feeling sorry for myself but noone other than those here in Limboland understand these frustrations.

I'm at a loss right now. I know God knows the plans he has for me but I just wish they were revealed sooner than later and I guess I just need to be patient, thats what I know Jesus would do! Well, I have typed more than I thought I would but I appreciate you all taking time to read my venting.Any advice will be WELCOME.Thanks to all of you in advance.May the Lord bless you all:):)
Tammy-T:)

[tjlmoo]

Valerie, Thankyou for the encouragement!
I also hope everything goes well for you with all your'e going through with your health/MS and work, which sounds overwhelming. I'm glad you will only have to work the few hours req. for health ins.  I pray the Lord will give you the strength when you do work and also a dx soon!
Take care and have a blessed and restful day.

Grateful and blessed,Tammy:)

[Valkyrie568]

I don't blame you for being frustrated. Stories from others who have gone through the early stages confusion really do help, don't they?!

I hope you get some answers soon, too.

Valerie

[tjlmoo]

Hello, Thanks for sharing your story.It is real encouraging for me.:)

I have had only one brain MRI and I hope to get another before my insurance starts over since I have met deducts etc. and anything at this point is cov.100% other than co-pays.
I have not had a VEP, or maybe I have. I had the checkered board test with red dot 2 mths ago but they said that was fine.

I am going to see the eye doctor next week as my neuro suggested due to some eye pain and changes with eyes(blurry etc.).

I do pray the Good Lord will help us all get answers soon!
I have been encouraged by you and so many others even before I posted this as I have been reading alot of the posts.  It has been a blessing!

I pray the Lord will bless you with a good day and I will keep posting and watching for your posts and others.

Greatly blessed, Tammy:)

[Sidesteps]

I agree with everything everyone else said --- my doctor had indicated that a negative LP just indicates there isn't enough cells to show up and/or it could be early in the disease course or benign. I just don't think they understand enough to be able to tell us but a positive is the "easy button."

I spent nearly a year with negative tests along with a "clear" MRI. There was a lesion missed on my MRI reports. Every single test was negative with scattered abnormalities and signs on my Neuro exam but nothing specific. They had no idea what was wrong with me but I knew something was very very wrong as I'd not once had any symptoms prior. I am just standing tall and stubborn. :)

I admit, I scoured through my tests and MRI's so I saw the lesion sitting there and kept looking for an answer. This last MRI was done on a better MRI and reflected more lesions. The lesions are also in high MS location areas that are atypical for anything else. My MSologist opted to repeat a bunch of auto-immune and cancer screening tests again ... wait and see.... two weeks later I'm in a flare again (Optic Neuritis) and being treated with IVSM. It should be enough to tip the scales and get DMDs but we will see.

This is a very frustrating process. It sounds like your doctor is communicating well with you and really trying to sort this out for you. It may be time for a 2nd opinion with a MSologist is in order. Something you can pray on. I am seeking a 2nd opinion with another leading MSologist in March. I feel the communication between my current MSologist and myself could be better for me and I need someone else to take a 2nd look at me.  

Oh - I was followed with 6 month MRIs and will likely continue this for some time. I think another MRI is very reasonable but he may want to try to catch a flare. If you have an interval MRI, your insurance will likely struggle with an impromptu one during a flare if it's recent so catching an active lesion will be an even greater challenge.


Have you had a VEP?

[tjlmoo]

Thankyou Marie, I aprreciate this info. I will check out that post and go to the link you suggested. I am so grateful to this forum of Limbo friends and I can tell that some of you are like family to one another.
You are always so encouraging to all! Thank you and I pray that the Lord will bless you for all that you do and for starting this forum so those of us in limbo have somewhere to share and other loving beings to relate too.
Hugs to you too!!!!
Grateful and blessed,
Tammy:)

[MrsAristotle]

Hi Tammy dont despair. A forum buddy who lives in the UK has been to see a MS specialist. She had a negative LP. She was diagnosed a few days ago with RRMS. You dont have to have a positive LP for MS. The LP is in the main to eliminate any mimics of MS, but a bonus if they do find the MS banding.

If you look for the post which states USEFUL LINKS ETC, there is a good piece on there all about how you can be diagnosed with MS even with a NEGATIVE LP.

IF you have classic episodes (dissemeniation in time etc), lesions which are demylinating and even ON you can be diagnosed with MS.

Your symptoms sound MS but they can also be FMS.

If it isnt MS I would expect it to be some sort of autoimmune problem.

Dont give in. Something is going on and you need answers. Big hugs. xxx Mariax

[tjlmoo]

Stacie,
Thank you so very much for concern and cares but also for reminding me of all of the Lord's truths and that he is still with me as he has always been.
I want to thank you for the Praying it forward that you started on the MS forum. I posted that I will join you in that!:)
I have only seen a neuro but now that you have planted a seed to seek a MS specialist I will do that. Wow! God works in mysterious ways and now I know what the next plan of action for me is. I actually had just went by the hospital earlier before I picked up my son from school to get a copy of the brain mri,cervical spine mri and LP, so now I have that for when I get to see a MS specialist. Thankyou for that! I pray the Lord will continue to bless as you are encouraging just as I have found others on this forum to be.  I enjoy reading your post's too.:) Take care !!!Your'e in my prayers.
Grateful and blessed,
Tammy:o)

[luvnGod]

Just to clarify when I say, "Check into that"  I mean a MS Specialist :)  

AND, do me a favor and when I fall into one of my states of frustration, please remind me of these wonderful truths!!!  hee hee....we all need to feel supported from time to time :)

Stacie

[luvnGod]

Hi Tammy,

Have you been to see a MS Specialist or are you seeing a regular neuro?  I have been through the ringer for years as well and finally had my first appt with a MS Specialist in January.  I go back to see him in March.  He really knew his stuff and since he specifically deals with MS he cut to the chase and new what to ask.  He also looked at my past MRI's and tests, etc.  I'm getting closer to a diagnosis.  I have Celiac disease so they are trying to rule out the possibility that all of these crazy symptoms could be coming from that.  I seriously doubt it...I've been on the Gluten free diet for 2 1/2 years!  

Anyway, my point is it may be beneficial to check into that if you haven't already.  Just as you said, God has amazing plans for you!!!  One thing I constantly remind myself is that God's promises are true.  Just as in Jeremiah 29:11 as you have stated (one of my favorite Scriptures) we can trust that God willfollow through with His plans for us.  We know He doesn't want us to live in despair or be discouraged, but to look to Him as our continuing source of HOPE! Take a deep breath and remember God sees the other side of this, He has been with you before, He is with you now, and He will continue to be with in the future!  

Much love,
Stacie

[tjlmoo]

Wow!! I just read it. I too wish to encourage you and please know  that you will be lifted in prayer daily. You have alot more going on than I do. I wished I was working but in time we'll see. The couponing sounds interesting, I wish you lots of savings:)
My next neuro appt is April 3. My first brain MRI was almost 6 mths ago so since then I've had the 2 week flare up then one that lasted almost a week in January so I wonder if they would or could do another MRI before my insurance /year starts over. I've reached maxout of pocket so therefore the next one would be covered 100%.A friend of mine that has MG said that with what all I went through that some new lesions may be there, but I don't know if I should ask the neuro before my appt. but April 1st starts the new insurance year. Any advice?
Kim , thanks so much once again for your kind words of encouragement.
Grateful and blessed,
Tammy:)

[Twinsmom06]

Yes...that was me! I wasn't sure if you would remember:) I just posted again in my original "frustrated" post.

When do you go back to talk to your neuro? I do hope they are kind to you and follow through with more testing. Everything I read talks about early detection and how important it is to start DMD or make other life changes right from the start. So I get very upset when patients get the "write-off" from their doctors when one test does not fit the norm...but it happens all the time! Sad:(

Hang in there my dear. You have a great attitude and a clear love and faith in the Lord. Two very, very important factors when gonig through all of this!
Kim

[tjlmoo]

Thank you Kim, I remember your post about lost MRI and sinus cyst and I had replied in concern.Have you found out about it or anything more to what they plan on doing?Sorry to hear about the other mass. I will continue to pray about this and I too hope that it will all be taken care of soon.I appreciate your words of encouragement I guess I'll have to hang in limbo until next neuro appt and MRI.Please let me know how things are going.I will continue to watch the post's as well.Take care and many thanks once again!
Feeling blessed, Tammy:)

[Twinsmom06]

Our situations sound pretty smilar. I have a boat load of lesions and most of them are typical or specific to MS. I have mild symptoms...the first time I went to the ER because I thougth I was having a stroke. No stroke....thank goodness. I also had a negative LP but also tested negative to every other MS mimic known to man. I have had blood tests done at least a dozen times in the last 6 months. I also have negative spinal MRIs and normal VEP test.

My neruo is at a loss because he really expected the LP to show something and it has him questioning a Dx when he was so convinced it was MS prior to the LP. He is not ruling MS out at all. He thinks I may be one of those who have a negative LP and still have MS. In fact, on the MS support page, many who have the Dx had a negative LP or never even had one as part of their Dx.

I too have a sinus cyst as well as some other enhancing mass that they are looking into. I guess my head is just a big fat mess! I too have RLS and often wake up as if my legs have been cramping all night...although they never actually cramp during the day???

Anyway...I just wanted you to know how much I really understand your frustration and feelings about this. I'm the kind of person who would rather know so I can be pro-active. I hate the "wait and see" parts of life!

Hang in there and don't let a negative LP keep you from looking at MS as a possible Dx. Some neuros will write you off but a good one will fight to see what is going on!
Take care,
Kim

[tjlmoo]

Thank you Laura. I just wish this all could go away or there could be a name put to this so that I/We could be treated with meds or  something but I guess our day will come or the miracle of being healed of these dreadful, life sucking diseases will come. Thanks for sympathizing with me:)
Blessings,
Tammy:)

[dogmum]

Hi there...

I don't have any advice for you, but I can sympathize.  The waiting and not knowing is a daily battle.  Good job on reaching out though.  Letting the people around you offer you support and help to carry your burdens makes a world of difference.  

Take care and wishing you well.  Hopefully we won't be limbolanders for long.  :)

Smiles,
Laura