My very last test for MS - ever!

[Shashi]

I just had my very last test for MS. I had an MRI a week or so ago that showed two non-specific lesions that aren't indicative of demylination (according to the report I picked up this afternoon) and then I had a VEP at my doctor's office which was right at the upper edge of normal - again. (On their machine, it was 106 msec delay in my right eye, and 105 msec delay in my left eye.)

So that's it. I'm done. After five and a half years, I give up trying to find answers. I know I've said that before, but this time, I mean it. I don't care anymore. I'm not going through any more tests. No more MRIs, no more VEPs, no more blood tests, no more doctors. I'm not going to hope for any more answers. I'll just live with whatever this is, take whatever meds I need to to help the symptoms as I've been doing, and hope it doesn't get any worse.

I am now a permanent resident of Limbo Island. And I hope it's okay if I just hang out here sometimes, since I really don't know where else to go for support or answers to the weird symptoms that sometimes pop up. MS has the closest symptoms to whatever this is, even though it's evidently not MS.

And thank you all for your help throughout the years. It's meant a lot to me. You're all fantastic folks.

Hugs,

Lisa

[valeriem2220]

I am so sorry you cannot get answers Shashi. I know how frustrating it is and I have only been fighting full force for an answer for less than a year. Finally getting an answer on Wednesday has brought a little peace to me.
I pray for you that very soon someone somewhere will come up with an answer for you.

[photomama]

as another long-time limbolander... (((hugs)))

there are no words for the feelings of a long time limbolander, especially when the symptoms don't go away. No way to "fight" it, no way to prove it or whatever. Just treat the symptoms and hope.

Rollercoaster.

Sorry this round didn't lead to answers. My latest round didn't either. We are all here. I don't know if we will ever have answers or what the answers (if we get them) will be. But, at least here we aren't alone. Somedays that is all that keeps me hoping for answers, or keeps me fighting my symptoms and not giving it up to this disease (whatever it is). We are all here for you.

((hugs))

[REG53]

Shashi, I am so sorry you are going thru this. I know how frustrating it is, it took many years for me to get dx.

I pray your sx's get better and you find answers soon.

[Lori Lee]

How utterly frustrating!! I am so sorry. I have been at it for a year but cannot imagine 5 and a half. (( Hugs)).

Hang in there. We are here to listen.

Blessings,
Lori

[hope32]

(((HUGS))) I'm sorry you haven't found answers. I'm happy to see you around here any time though; I appreciate your kind, caring heart and helpful words!

[gomer]

Shashi.....

I think I know how you feel. I gave up back in 1987, it was a very rough time for me, tried to docs to take me more seriously. I felt like a dead man walking, told to take B12 shots (borderline) and to use a cane. I was sent to the shrinks even, who decided I was not nuts, not even depressed, just "adamant" that something else was wrong not showing up on tests.

I got so disgusted I went for years w/o seeing any doctor even for my diabetes, just continued with the insulin routine I had been on for many years. I got better slowly after that nasty bout in '87..but I would still decline and have flairs from time to time.

I KNEW something was wrong, thought about trying again, but I was reluctant to get back on the road to nowhere. I hurt my back on the stairs about 2005, but I suffered instead of seeking treatment.

Jan 2007 I fell again, tore a rotor cuff. Again I avoided seeking any medical care. It was the only way I knew to avoid being GOMER'd. My diabetes got harder to control and my BP as well, till I ended up in ER. That year it was 2 shoulder surgeries, 2 eye surgeries and a laser treatment....at least I was gaining a little ground. It was NOT easy, went thru 3 eye docs, 2 GPs, 2 surgeons, 2 foot docs an ENT and more, just trying to get some issues dealt with. Just what I went thru from '07 to '09 could fill a huge book, easily!

Then in late summer 2009 another new eye doc. For the first time since I developed diplopia in 1964, the question of WHY popped up. The new eye doc said it was purely neuro-muscular and not anything in my official Med record and formally opened the MS can-o-worms. There had been tests, like MRI that showed many classic MS Dawson's fingers etc.

I went thru so much for so many years, got a bad attitude about doctors in general, more like disgust. I still found some absurd and some not so bad and kept plugging away. When we finally got testing done, the same VA that dismissed my complains decades before ended up doing the testing and the Dx was long standing RRMS.

The MORAL of all this.. maybe a break in the search for answers.. and when you least expect it, some doc will stumble upon or question something that will lead to the ANSWER and connect the dots, whatever it may be.

Keep records and notes in the mean time, they may come in handy later and eventually lead to the answer you seek.

Gomer sez... Good Luck

[winnie123]

I am in the same boat as you! My journey has been 3 years long. 23 Lesions that do not match McDonald Criteria, many symptoms. All other tests negative. Finally had MRI in July that showed 3 new lesions on Brain Stem which would confirm MS Radiologist report claims could be artifact thought. Which is shadows. Just had repeat MRI and they said they did NOT see these lesions on the Brain Stem on this MRI. My family doctor says YES for sure it is MS and my neurologist says it is Probable MS. I hate all the symptoms mostly pain and no one will give me strong enough meds to deal with it. Feel lousy first thing in the morning good for a few hours then pain comes again.

I know how you feel it has been a long exhausting journey. I too say well, I give up. Feel like it has all ruined y life so far. Not feeling good affects marriage, no job. How do you get a spouse to believe you do not have the flu but something chronic and forever.


I wish you all the best...Hope one day we are out of limbo land...

[asiel1]

girl I hear ya. I have told everyone in my family that if nothing shows on the MRI this time I am done! At this point I feel like my docs think I am a hypocondriac.

I am tired of the endless testing, high medical costs, meds that give me side effects that mimic other conditions.

I have secretely considered kidnapping my neuro and letting him live with me during March and July-- when my "flares" generally occur. I then remember that kidnapping is illegal, -- well so is letting someone suffer needlessly with no answers is a crime as well.

If nothing else, we have a wonderful support network here on this board. I am grateful every day that they allow me to get on here and vent-- even if I am still in limbo.

Much love,
LBJ

[mjan]

Well my friend, SEE how much we all love and support you? With or without a diagnosis?

Yes take a break from doctors..but.. as Gomer said, log your symptom patterns and be prepared for your BRAIN/BODY to lead your toward an answer =the truth~!!

In the meantime YOU are a sourch of knowledge, comfort and support here for others struggling.

I just read about that poor guy who's lesions are gone after diagnosis of 15 years and this new neuro now saying he must not have MS.. GEEZ.. go figure. Such uneducated doctors.

Do you have a doc who will at least perscribe meds for your symptoms? I hope so...

Gentle hugs my friend..
Jan

[marti]

Sashi,

One of my doctors said it is worth it to treat with MS drugs even if it's not definite. Guess it won't hurt.

Please do NOT leave us. You have so much knowledge and many answers for us all.

[chalknpens]

MS label is just that

I'm sorry that you've suffered so long without THE answer. I'm sorry that I did receive THE label of MS. It has made no improvement in my health. I think the injections have added to depression, have destroyed my confidence, weakened my stamina, taken me out of my classroom for an earlier than planned retirement, and defeated my sense of purpose, of initiative, and of worth.

I think others here have given good advice ... try to stay on top of your symptom management, keep track of your illnesses and pain. You don't get any better treatment with an MS label ... I think you get less. You're put in a category, given a prescription and phone number for injections and told to "call the pharmaceutical nurses" for advice ... you may start to believe that all symptoms fit the MS label, and miss something that could have been addressed differently (ex: arthritis pain, breathing issues)

Stay on the limbo island if it gives you comfort ... leave if all it offers you is an unmet goal.

My signature says it all.

[maitrimama]

Wow

You are all so brave and strong. I have only been in this medical quagmire for 2 months and if my sight wasn't involved I'd already be gone.

[Sara Angela]

Have you been tested for Lyme Disease? My understanding is you need to go to a Lyme Literate Dr.

Sara

[Shiela]

Shashi, I don't blame you for taking a break. Sometimes we just need to put things aside and focus on enjoying what we can out of life.

I so glad you are not leaving, and you are certainly accomplishing much good here. So many are going through the same thing and it's so comforting talking to others that understand.

We're still here for you and hoping you will find resolution and help as soon as possible.

(((Hugs)))