Desperately need advice...

[luvnGod]

Hi all,

I feel as though I'm falling into a dark place again that I don't want to be in.  I've been in limbo so long with symptoms that obviously are not "normal", but no answers.  I've had MRI's...all negative for lesions, I recently had an LP (this past Thursday) and the neuro's nurse called this morning and said no O bands.  They had told me it would take 2 weeks at least to get results back, and I've already gotten them.  Anyway, I feel like the MS book has been closed.  I totally understand other diseases mimic MS, but nothing is showing nothing.  I feel nuts and just want answers.  I don't know whether to let this go and wait for the next attack or to keep pushing.  

They were ready to refer me to a MS specialist and asked if I still wanted the second opinion.  I didn't know what to say since O bands were negative, so I said I guess not.  Please let me know your honest opinions and advice.  Would you still ask to see a specialist?  Should I just let this go?  Should I go to a teaching hospital and just say please do what you can and figure this out?  Your responses are so greatly appreicated!

God bless you all!
Stacie

[luvnGod]

Thank you all so much for responding!  Again, it is such a blessing to feel that others understand and can offer support.  I feel that I should do my best to fight and stand up for myself, because I know no one else is going to do it for me.  

Summerluvr...I can't remember the WBC but I do know they were very low.  That is a good point though about maybe coming out of a infections/cold, etc.   My heart goes out to you for your diagnosis, but I am glad they discovered what was causing your symptoms.  

You all make such great points that I will keep in mind and carry with me!  

Blessings!!
Stacie

[Sidesteps]

LuvnGod,

No - do not let this go! Keep pushing until you have answers. Pray. Find His strength and keep going until you are giving a path.

I am still in limboland (at this moment) but I am one step closer to answers today than I was yesterday. I am three steps closer today than I was 4 months ago....all because I took the steps to look at my own MRI, ask questions and seek a MSologist at one of the top hospitals/research facilitities in our area.

I intentionally sought a doctor who listened to her patients and was paramount in the MS community. She had all the best equipment available to her. Like you, I was told all my test results were normal but they weren't really. There was subtle abnormalities throughout several tests and a good size lesion missed on two of my MRIs!!!

She ran a bunch of labs (repeat tests); ordered a spinal tap (came back negative as well); had me see a Neuro-Ophth (who found atrophy of my Optic Nerve and pointed me to many suspicious areas on my MRI); and lastly had me complete new MRIs of my brain and thoracic (found several lesions) but no enhancement.

She had informed me awhile ago that it appeared from the tests that we caught it early since my symptoms and tests are not obviously MS. (That strangely brought me comfort.) I was encouraged by the latest specialists to remain diligent and assertive with my health. I am glad I did.

Please keep searching - please. Find a specialist that has the best equipment and the right attitude.

(((Hugs)))
~Barb

[summerluvr]

Oh and how low is low for your white count?  if it is just outside the range then it is not to low.  This can happen if they do the test and your body has just fought an infection (cold/flu) so you depleted your white cells!

[summerluvr]

Hi LG  I have a rare blood cancer called Multiple Myeloma.  It is maybe more accuratley a cancer of the bone marrow as that is where the cancer cells start.  Myeloma is monoclonal plasma cell cancer since it is a plasma cell that copies itself.  I had somewhat of an atypical presentaion caused by a rare symptom of myeloma called hyperviscocity which was affecting nerves and things. But upon furthur examine had I had many of the common symptoms which include bone pain, frequent infections, night sweats, elevated calcium (which causes it own weird symptoms). Though I didn't have 'weight loss" and I'm now more heavy then before diagnosis because of my treatment and would be happy to loose a few.

Internal medicine team is just a clinic at the hospital with Internal medicine doctors and residents.  You see the residents and they follow up with the head physician.

In my case I was referred to  them from ER where I presented because I kept fainting. Blood work was done that showed my very out of whack counts that were very consistent with Myeloma. (very high protein levels, and very anemic are the main ones)

[luvnGod]

No sllowe, they really didn't give me any direction except for let us know if anything else comes up.  I did end up calling back and asked to speak with the neuro.  The office just called me and it was the nurse, she said the neuro doesn't usually talk to patients over the phone but he would schedule a consultation appt.  

So I am going to see him this Friday.  I did also tell her that my husband and I decided it would be best to go ahead with the referral to the MS specialist.  She seemed really taken back by this.  I can see her point of view, BUT again, I feel this is more his area of expertise and I'm sure he's had patients with MS symptoms that don't end up with MS, but he knows where to direct them.  

I'm concerned if I do not go, it will be a wait and see and no answers.  I truly feel this is what I need to do.  I have prayed all day and I feel confident this is what God would have me do.  Thank you for your repsonses, it helps so much to get feedback.  Sometimes it just takes others that have been there to share their thoughts and feelings; it really does help more than you know.

Blessings

[heartfelt77]

I personally agree with your husband. I would go on to see the specialist and if its not ms than maybe they can direct you.  It can't hurt anything exspecially since you know something is wrong you just don't know what it is.

Take care....   God bless you.  Just know god is on your side no matter what !  Follow your heart.

Misty

[sllowe]

Oh, I'm so sorry :(

I don't think it's a bad thing you said no to the MS specialist, considering you've had so many negative tests. But, what I don't understand is that just because it's not MS, why the doc didn't offer any insight on what could be the cause, or if you needed a different doc or something. No one should be left w/nothing and no where to turn.

Did the office say to see you back at some point?

[luvnGod]

What is your diagnosis if you don't mind me asking.  The one thing over a year ago that was really out of whack was my WBC.  It was really low and they said it was no big deal.  After a year it is still on the low side but they say it's a low normal.  I KNOW there's something going on in mybody that isn't right.  I ended up calling my neuro's office and asking to speak directly with my doctor and i haven't heard from him yet.  I really hope he will call me back soon.  I have a list of questions ready to ask him when he calls.  My husband thinks I should still go see the MS specialist, and if it's not MS at least he can lead me in the right direction.  

I have not heard of an internal medicine team.  So glad that they took you seriously and helped with your problem.  I pray you are well!
Stacie

[summerluvr]

I don't know your story so I can't make detailed comments, only can say you know your body, if you feel really unwell you need to push for answers.  Have you had any clues pop up? and irregular tests at all? If so I would pursue that. Eg. have you had any blood work slightly out of range, or any MRI findings of lesions or anything? If you haven't had any clues than how about treating your symptoms for symptomatic relief. Before my diagnosis (not MS  btw) we had started to do this for the nerve pain in my face and then I got really really sick and ended up in ER, and quickly diagnosed by the internal medicine team. (kind of like tv show house)