MS Diagnosis

[ginsa]

Has anyone been given a definite diagnosis of MS who did not have an MRI show lesions or spinal tap show anything?

[momtofourboys]

They say from what research i have done that MS comes and goes you can have flare ups. Also from what I was told a few years ago, MS on a MRI doesn't show up until later. the first few years it is very hard to detect MS
I will you all good luck and WE ALL can ge answers
michelle

[ShellJayBlue]

Hi, I'm in Australia, and have had tests for MS.
My MRI was clear also, then the symptoms went, but are back again after a month.

The first time the Neuro told me she didn't know what it was, but was 99% sure it isn't MS, but to come back and see her if the symptoms returned.
When she examined me before the MRI she suspected demyelination (MS).

A month later the symptoms have returned.
I am experiencing numbness and tingling/heavy feeling mainly in left arm and leg. Electrical like 'pings', stabbing pains, pins and needles, burning sensations, exhaustion, concentration difficulties.
Physical activity causes the symptoms to worsen, as does a bath, long shower, and just getting too hot. I get very weak, and have trouble walking after these triggers. I have also had some very slight blurry vision, but it went away after a few days.

My sister has "probable MS" and said her first MRI 10 years ago was also clear. Her 3rd MRI showed lesions though.
She's had symptoms for 10 years, and has 4 brain lesions and still doesn't have a 'definite' diagnosis!!!

I know they can also do Visual Evoked Potentials as a way of helping to reach a diagnosis, but I'm unsure if this is after an MRI, or in conjunction, etc.

[ginsa]

When you go to your dr it's best to have as much info as you can find on the LDN. Here's the official website

www.lowdosenaltrexone.org

I'm finding a lot more info on the web the past two weeks. I don't know if I'm getting better at searching or if there's just more info being published.

I didn't take my LDN the past two nights and I'm really regretting it. I knew it was helping with fatigue, but only now do I realize just how much.

[ginsa]

If you can't have an MRI the Spinal Tap may be the only diagnostic tool to use on you. You have a lot going on and that must be frustrating. You can have MS and other nerve problems at the same time. I hope you find out what's wrong and get some peace of mind.

[momtofourboys]

Hey I am going through test right now for MS I can not have a MRI because i have a  spinal nerve stimulator. I have muscle fatigue in my hands no reflexes in my knees and bend of my left elbow. my arms feel heavy and numb.I drop things and loose my grip too. sometimes i have tingle in my right arm, but could be from a herniated disk(a very small one) needle pricks on my face at times.I also have tumors on the nerve in my foot (Neurofibromatosis) those are on the right leg/foot. my left  legs goes numbs and i fall. i have nerve test done on Thursday and am going through blood work one more nerve test. possible spinal. I just want answers. oh my fingers feel like they are burning and someone is pouring salt on my burning fingers. sometimes i forget too like hubby's co worker called and i was telling him he was at this other person's house helping out and i forgot all three of these people work together.

[aynadee]

Yes hopefully it doesn't but I keep a log of new symptoms then when I go in to see the dr I mention everything  that has happened. So maybe if it's masked but you notice things you can write them down in a log and talk to your dr about this. Im actually going to ask my dr about this LDN that you speek of especially if it's helping with MS symptoms.

[ginsa]

I saw a nerurolgist today who scared me away from having a spinal tap. He said my symptoms weren't bad enough to warrant such an invasive test. He did, however, say that there is definitely something wrong and scheduled an ECG for next week.

My symptoms have greatly improved since I started LDN (Low Dose Naltrexone) last week for depression. It's being used off label to treat MS and other autoimmune diseases. From what I'm reading MS is a very difficult disease to DX. There are people out there that don't have it that have been DXd with it and people who DO have it that havn't been DX with it. I hope that the LDN didn't mask my symptoms to the point of interfering with a dx.

[aynadee]

I would definitely get the spinal tap. I don't have insurance so this was a very costly diagnosis but I found charity care programs and what not that paid for my hospital stay and the diagnosis all that it w as $16k. So Im pretty sure if you looked into there's gotta be something in your town to assist you. I still have hundreds in bills to other places but at least I got the big one knocked out. Definitely at least do a spinal tap. Fatigue is the number 1 symptom for MS.

[ginsa]

Thanks for your post. I wondered if a trauma could affect the process of the disease. The LDN I am taking for depression is helping with my physical symptoms. but I really need to know what is wrong with me. I can't work the way I am and I need to have a reason for that. The worst part of it is the constant fatigue. I wake up tired no matter how well or how long I sleep. I suppose the spinal tap can't be as costly as MRI, so there's no reason not to have it.

[aynadee]

hey there. it sounds to me like you do have MS. I was diagnosed with MS in February this year. I'm 21 yrs old.  I have twitching in  the face in prolly the same spots you get them, muscle spasms, numbness, fatigue, cognitive thinking gets messed up sometimes, sometimes my right foot drags (this is caused from a lesion on the left side of my brain that controls the function of the right side of my body) dizzy spells and many more things. It started a year ago when I lost feeling in my hand by the end of the week I couldnt feel my entire arm. I thought I had a pinched nerve so I myself went to a chiro and nothing happened the numbness went away over time.. come to find out that was MS. I have heard some people have their MRI come back fine have a spinal tap and get diagnosed with MS. I however have at least 21 lesions and had a resident preform my spinal tap. he messed it up. im lucky to not be paralyzed. They say bad accidents can make your MS visible. maybe this horse accident is when it initially showed its face. I hope this helps for you. good luck lemme know what happens.

[ginsa]

I have pre-diagnosis of MS. I had stroke like symptoms last Aug. and CT scan & MRI. No stroke. Now my doc thinks MS. I had another MRI Thurs.. If I had MS wouldn't there have been lesions on the MRI last August? The Neurologist in the ER wasn't looking for MS, but would it matter? I have had facial numbness ( even in mouth ) esp on the left, but not limited to, and twitching esp around eyes and cheeks. Both feet tingle and feel numb, and also parts of my left side. I have a sensation along my left side that is hard to describe and sometimes feel like it's dragging. My trapezius muscle tenses and hurts, like spasm's almost. I see a chiro and it doesn't help.

I did have a very bad fall from a horse a few years ago that took a long time to recover from. Since then I have had MRI's of my spine and all that shows is some disc dehydration and arthritis in cervical. I have had streoid injections in my back and took opiates for 3 years to cope with the pain. I started tapering off opiates in Dec '08 and am now clean.  I'm wondering where to stop with the tests. I have insurance, but am unemployeed and running out of resources to pay for all of the testing. I am currently taking Neurontin and NSAIDs for pain and ( experimentally ) LDN for depression. I just started the LDN last Wed. Any advice or comments, please?