LP Results

[scaredihavems]

As I was afraid of, my LP results were normal. Now I am so frustrated. It's not that I "want" something wrong with me, I was just hoping it would show SOMETHING so that I could at least get some kind of diagnosis which would lead to some kind of treatment. I feel like I'm gonna be stuck on limbo island forever.

During my neurologist appt, I asked him if there was anything I could take to help with all this tingling nonsense, to which he replied "no", then asked me where I was getting all the tingling (it starts in my hands and feet and works its way up), then he said "why, is it bothering you?". Ummm duhh? I couldn't resist replying "Well if it wasn't, do you think I'd ask you if there was something I could take for it?" He gave me Neurontin (Hmmm, I thought there was nothing you could take for it).

I saw my PCP today and he gave me a referral to a new Neurologist, one that will actually take the time to figure out what is going on.

Just wondering, did it take a long time for most of you to finally get a diagnosis, even if it was something other than MS? Did a lot of you have to go to many different doctors before you found answers?

[SNOOPY]

Just wondering, did it take a long time for most of you to finally get a diagnosis, even if it was something other than MS? Did a lot of you have to go to many different doctors before you found answers?

In my case: No.

Went to my PCP who said he could not help me and gave me a referral to a Neurologist. Testing and appoinments with Neurologist. All of this took 3 months.

Best wishes on finding answers to your symptoms

[laurasari]

It took me 2 years to be diagnosed. I used the same neurologist and still do since 1999 but fortunately he has been wonderful. My lp came out inconclusive but i did have lesions on my MRIs and diffrent problems over the 2 years. I do hope that you hit it off better with the new neuro and that he takes the time to listen to you that is very important.
Keep us posted
laurie f

[jamilea]

Hey There,

I'm sorry you didn't get answers from the LP. Take hope though. A lot of people get stuck in limbo. These kinds of things can take years sometimes. The point is to rule out MS to find it, however, a normal LP doesn't necessarily mean it's not MS.

I'm glad you got some Neurontin. Give it about six to eight weeks before you decide it doesn't work. If by that time, you still feel uncomfortable with the tingling, don't hesitate to ask for an increase until you find a dose that works for you. There are other things to help with that besides just that one med.

I agree with you. You need a neuro with some balls. Someone who isn't afraid to investigate. Good for you to ask for a new one!

Hang in there. We are here for you and know how you feel.

When you said, "It's not like I want to have a disease", or something like that, it hit home with me and I just wish I can give you a great big hug to tell you that we all KNOW how this feels and it's not necessary to explain yourself like that. After all, why would someone want a progressive and degenerative brain disease? As if! I can't believe some folks!

Your PCP can prescribe medications to help manage some of your symptoms just the same as a neuro can

Please keep us posted.

BIG HUGS,
Jami Lea

[Redwings]

Just wondering, did it take a long time for most of you to finally get a diagnosis, even if it was something other than MS? Did a lot of you have to go to many different doctors before you found answers?

For me, it was 10 years to be misdiagnosed with MS, and another 4 to be diagnosed with neuromyelitis optica (NMO) (17 years from first symptoms).

Half of the neurologists I saw (all women, for some reason) were incredibly arrogant jerks. The other half were pleasant, but unable or unwilling to help. I can say that dealing with that half was a complete nightmare and among the worst experiences of my life. The ophthalmologists were better, but none were able or willing to help with a diagnosis.

The neuro who made my NMO diagnosis was a man (a really good guy, too) at a university medical center (USC), and the neuro I see now did a fellowship with him. I see her once a year as a formality, since she isn't the one who treats me. I'm treated and followed every couple of months by a top-notch neuro-ophthalmologist. I wish I could tell you how I got lucky enough to cross paths with him, but I really have no answer for that. But I thank God for him every single day.

Part of being in limbo can involve doctors who just don't know what they're doing when it comes to neuro-immunology. Or they're just careless, arrogant jerks. But a lot of it is also because our bodies just don't give enough clues to tell what's going on. Unless a doctor is also psychic (sometimes called a medical intuitive), it just isn't possible to make a diagnosis when our bodies keep delivering normal test results.

Even with recurrent optic neuritis, it wasn't until many years later that I finally had a spinal cord lesion and partial transverse myelitis that gave the clues that led to a proper diagnosis.

Sometimes, even with the best doctors, our bodies just don't give up what's going on. All we can do is get treatment for symptoms, let go of fear and change our expectations. Keep pursuing answers but, in the meantime, be as realistic as posible and live your life as best you can.

[Scooter24]

I was just lucky I guess or it had progressed long enough that it was any easy dx, from the time my gp did the Nuero consult until I was on Avonex was less than a month, including 2 different MRI studies and LP.

[barelracer]

still in limbo myself..

I have been having problems since april, and even with some "positive" tests, I am still undiagnosed...

I am with you, I would rather not have anything wrong, but I am scared, and suffering, so an answer at all would be greatly appreciated!

I finally was referred to a neuro, but even with a positive mri, she flat out said she couldnt help me...what a wasted trip that was...

I am taking a brief hiatus from new doctors for a bit..(except for my pcp, who is treating a new troubling symptom involving my lymph nodes)...on my pcp's recommendation..he suspects MS or lupus...but doesnt know where to send me now, since the rhum's I saw insist its "depression w/fibro" in spite of the mri's and blood results, neuro symptoms, and limbs occasionally not working, not to mention lack of sensation (electric fences dont scare me..!)

I hope you get your answers soon..I am finding that even with tests results like mine answers are hard to get..I cant imagine how hard it would be to be taken seriously without them...my Doc says it may take a year or so more to get a dx...*sigh*

[heliotrope]

Hang in there! Hopefully the new neuro will better..
.
I got very lucky. I was "diagnosed" on the first MRI... and then had the neuro back off fast. Clean LP, MRI wasn't MS specific lesions, symptoms don't match "textbook" MS (mine never have, minus the fatigue). Went into a major flare, which doc ignored. And yes, I do actually think I was lucky. Second neuro looked at the same MRI and didn't back off (especially when I responded to MS treatments). The second MRI (my eye doctor wanted it) showed lesions in the same places in an MS form, which just confirmed his results. So, long story short, I have a diagnosis; a doctor that's been effective, although I've had to learn more medical terms than I ever thought... and it's a year since I first had symptoms.

All I can say is this. Don't feel bad for sticking your neck out. I'd hate to think where I'd be if I'd stuck with the first neuro.

[Shashi]

I've been to four different neurologists, a rheumatologist, an endocrinologist, and a few other "-ologists" that I've probably forgotten. I've had many different MRIs, blood tests, EMGs, evoked potentials, and one LP.

After all of that, I still have no diagnosis after four and a half years. And I don't care anymore.

I decided to get out of the house, stop worrying about the nerve pain, muscle spasms, dizziness, fatigue (which I don't have anymore, thanks to the supplements in my signature), vision problems, seizures, cognitive problems, balance problems, etc. and just enjoy my life and live it to the fullest.

I've gotten off of baclofen, which I've taken for four years; I've cut my Neurontin in half (and lost 12 lbs. in the process), I'm exercising, eating better, and I feel great.

Granted, I could have a flare up tomorrow, and I do still have a lot of the symptoms, but I'm not letting them control my life anymore.

If I ever do get a diagnosis, great. If I don't, then I just don't. But I've got too much living to do to spend any more time worrying about it.

[0485c10]

I guess I just like to repeat this, I don't think it will help any one though. I was diagnosed in about 2.5 hours after going to the emergency room. The previous morning I had difficulty with my balance, urine just ran out of me periodically, I was slurring words, my right hand wouldn't work. Well hot damn I went to bed and hoped some sleep would fix it.

The next morning it hadn't. The most bothersome symptom was I couldn't use my right hand and arm. I wasn't sure how i could function in employment like that. With much persaution from my parents I finally agreed to go to the walk in clinic and get this fixed so I could work. But I said at 9 am, we will give it until11 am to clear up on its own.

At 11 am it hadn't cleared up so I allowed my folks to drive me to the walk in clinic. At the walk in clinic they immediately transferred me to the ER with suspected stroke. The ER doc ordered a MRI at the MRI center which was across the across the street. They took me by w/c (I hadn't been allowed to walk since I got to the walk in clinic) to an underground tunnel connecting the hospital to the MRI center. I lived in this city for 20 years and worked at the hospital next to it & never knew about the underground tunnel until that day I used it. I had gone to the head of the line in the ER now I was immediately taken in at the MRI center.

They ran a brain and cervical spine MRI then took me back to the ER by way of that underground tunnel again. When I got back to the ER, the ER doc told me it was MS without a doubt and that I had had MS for a long time based upon the MRI.

Then he admitted me to the intensive care unit and started the steroids. At which time my tears started falling and didn't stop for days. It was all too much. I had lost my job a few year earlier & was still looking for one. Now this! How was I gonna explain this in an interview? And how was I gonna fill out the tax forms I need to fill out if I got a job with my right hand not working? Its why I came here & they weren't gonna fix it!

I only stayed in ICU overnight then I was discharged to complete the IV steroids as an outpatient.

I called the 1-800-FightMS phone number where someone explained to me that the crying I was doing and couldn't seem to stop was from the steroids. "Its steroids doing this. Its not you, its the steroids" Tears just wouldn't stop, I was slurring my words, my hand wouldn't work, my balance was bad, I had insomnia from the steroids,they had discharged me from the hospital with an internal foley catheter which leaked when I tried to sleep, made my front genital area sore, and I was missing chairs when I sat down so often, I would land on the floor. My butt was sore from falling on the floor and my front was sore from that damn internal catheter.

Before my 5 days of steroids were done I wanted to send letters to the last clinic I had went to 2 years before and that F*ing doc had diagnosed depression and prescribed paxil which I never filled because I knew this wasn't depression. I just wanted to write a letter to her to say that she was wrong W-R-O-N-G!!!! And have the letter be put in my file that I was never depressed, it never was depression. It was incompetent medical care!

Then I realized having a diagnosis of depression in my medical file wasn't gonna make it more difficult to get health insurance now that I have MS in medical file. So depression didn't matter. I didn't write the letter or ask that it be put in my file. It didn't matter.


But I got a 2 &1/2 hour diagnosis out of her poor medical skills.. I had agreed to let my parents drive me to the walk in clinic at 11 am. Its a half hour drive there. At the Walk in clinic(11:30 am) they transferred me to the ER which was in the same building just a different part, they got an the MRI at the MRI center across the street and at 2 PM they told me it was MS without a doubt and I had had MS for a long time. 2&1/2 hours to diagnosis.

Later my folks and I discussed how stupid our action had been for symptoms of a stroke---go to bed and see if it goes away.

If my reaction to stroke like symptoms doesn't tell you I am a person who has lived with MS for a long time without knowing it, I don't think anything will. I had more than a few docs tell me over the last 19 year 'sometimes these thing happen, but they clear up"

And they always did. I never suspected anything was wrong until that 2&1/2 hours in the ER. It was a short MS diagnosis but with a real long time run up to it.

[jordynbbz]

heey, my LP was clear too but my MRI's and blood tests looked to be MS in its early stages. i think i'm still being put under treatment soon even though i don't have a diagnosis :\ it's been 9 months for me and no diagnosis. hope things work out ok for you and you get answers soon!