This Is MS Multiple Sclerosis Community: Knowledge & Support

I have an appointment with a neuro next week to go through my long list of symptoms. I'm in the process of scheduling an MRi with no contrast die( I wont do contrast die since I had a reaction to it on first MRI in 2006). 2006 and 2008 MRI's were normal. I continued to decline since then. At that time although I had all these weird symptoms, since MRI was normal and I had no lasting numbness they did not think it was MS(but gave no alternatives and laughed at my positive igenex lyme test).

If MRI is normal again I suspect they will want a lumbar now that I have a million symptoms/housebound and numbness that has not gone away and is spreading.

I' am so sick right now I don't want any stress on my body. I have extreme pressure in my head and have read that they can cause headaches? Anyway I just don't think it would be good for my body , especially right now given how ill I am.

Is this really necessary? Can I forgo/reject this? Is it conclusive?

Thank your for educating me!

Selma -- My first SEVERAL MRIs were normal; my EMG was normal too; I have never had a spinal tap (lumbar puncture); and yet the third neurologist I saw was able to diagnose MS.

If you do not feel up to a particular test, I do not see the need to put yourself through the stress. But this, of course, you need to explain and work out with your doctor. Bear in mind that MS was being diagnosed long before medicine had all these modern tests. My opinion -- just MY opinion -- is that a good doctor will recognize it from the symptoms.

The biggest relapse that I ever had was caused by a lumbar puncture.

It began the same evening that I had the procedure and lasted for weeks.

It resulted in Tinnitus, it caused my legs to be pretty near paralysed and my optic neuritis worsened considerably, sight becoming very blurred and I lost senditivity to light.

I recovered 80% from the optic neuritis, the tinnitus disappeared completely and the troubles walking ameliorated a great deal.

I feel that I accumulated some damage that I never recovered from.

Others here have had the procedure no problems at all. Me, I wish that I knew what would happen because I would never have undergone it. I don't mean to scare you, like I say others were not troubled by it, but it was a bad event for me.

It is not a fool proof diagnostic tool but it will rule out other conditions and, if it does indicate something else, it may prove be very useful.

I had an LP 2 weeks ago while I was an inpatient for another problem. I am having the worst relapse I have ever had with terrible numbness, loss of coordination & bowel/bladder involvement.
I have done some reading since coming home & it's COMMON to have a terrible onset of MS symptoms after an LP that often results in perm. deficits.

The value of the test is significant, but does it warrent the risk? That is up to you. I would NOT do it again given the choice.

Sarah

Selmahope
what is a positive igenex lyme test? Does it mean you most probably, or do, have lyme? If so, why do you think you then also have MS?
Lyme has often been confused with MS the symptoms are so simiar.

You'll be fine - just don't let them take too much fluid. When I had my first lumbar puncture it was no big deal. They only took a little fluid and there was no pain or sensation. I stood up half an hour later and was fine.

The second time they took three times as much fluid, I felt very drained afterwards, couldn't work for days and had a headache. I would not recommend having one if you have had a cold or flu recently or an infection, but other than that you should be fine. Drink lots of water and stay lying down afterwards for several hours.

You don't mention what your symptoms are but your neuro may also suggest nerve conduction tests - which I find a lot worse! A lumbar puncture can rule out a lot of rarer illnesses but the main thing it does is show whether the protein levels are high in the spinal fluid = suggestive of MS or some kind of neuropathy.. Seeing as your MRIs are negative they are bound to want to know about this. I'm not sure, but I believe a LP might also provide evidence of Lymes Disease.


gainsbourg

I test positive for lyme according to west coast IGENEX lab- bands 41, and 31. Positive for IGENEX is 2 bands/not the 5 required by the CDS.

This shows exposure /antibodies to lyme is my understanding. There is no definite test for lyme-lyme is very hard to test for is my understanding. I worry about Lyme being the new catch all.

I have lots of MS symptoms- optic neuritis, numbness, balance, gait, weakness, coordination, shaky, dizzy etc. plus a alot more- jerking of limbs, hands, fingers, toes, body jerks forward when laying down, neck jerking- and unbearable pressure in head/eyes shaking, weak shaky neck feels straining to hold head. up. Nervous system in overdrive, insomnia etc

I've become hypersensitive to supplements/medication. The first pharmecuticals I've taken set off this chain reaction/down. I'm terrified my body cannot standup to aggressive abx treatment/may cause seizures and continue this downward spiral (any worse and i'll be in bed). Of course the lyme folks say you have to get a whole lot worse before you get better and years and years of abx for late stage neuro lyme.. /very difficult to treat. My sleep cycle is so sensitive anything disrupts it my entire life.. and not sleeping now/body can't heal.

It's a nightmare for me right now. Thanks for listening.