Should I Do Spinal Tap?

[Miggity]

Hi all,

I have been having very mild symptoms that make me wonder if I have MS but have not been diagnosed. I have had MRI and it shows a small amount of white matter but inconclusive.

My only symptom is that my right foot and hand have been asleep for about 8 months. Sometimes in gym shoes and when playing ball outside I don't notice it at all. But I think its always there. Its more intense when I wake up in the morning.

Anyhow, I have NO other symptoms. I'm still very athletic, strong grip and strong legs, no blurry vision or any thing else whatsoever. Yet I'm sick of the asleep foot and hand. I would like to find a med or something. Yet I am avoiding a spinal tap for obvious reasons:

1) Spinal tap is nothing minor.

2) I want to try the Terry Wahls dietary approach to eliminate inflammation and see if it makes the asleep foot and hand go away.

3) I don't want a diagnosis if mine is so mild that I can completely eradicate it with diet. And also, what good would a diagnosis do me if there is no cure?

From everything I've read it doesn't seem normal (yet I recognize MS has no "normal") to just have two asleep limbs and NO other symptoms for so long... What do you guys think, would you do a spinal tap, can I request a med without having one etc?

[Jules A]

If you get a physician who will diagnose you with CIS I believe you can get medication without a formal MS diagnosis. I did not have a spinal tap because my MRI and symptoms were conclusive so it wasn't necessary and I wasn't interested in ignoring a duck that was quacking like a duck.

Personally I'm a fan of using everything in the arsenal to attempt to fight this disease and dietary modifications alone don't cut it, imo. The thing about MS, if that is what you have, is that it is mild until its not. That can be tomorrow or 20 years from now and unfortunately there doesn't seem to be reliable predictors. Speaking only for myself if I become bedridden from this miserable disease at least I will know I tried every thing available to prevent it. Other have different view points.

I'm guessing your physician recommended a spinal tap? If that is the case I would trust their judgment and do it. Best of luck to you.

[Miggity]

If you get a physician who will diagnose you with CIS I believe you can get medication without a formal MS diagnosis. I did not have a spinal tap because my MRI and symptoms were conclusive so it wasn't necessary and I wasn't interested in ignoring a duck that was quacking like a duck.

Personally I'm a fan of using everything in the arsenal to attempt to fight this disease and dietary modifications alone don't cut it, imo. The thing about MS, if that is what you have, is that it is mild until its not. That can be tomorrow or 20 years from now and unfortunately there doesn't seem to be reliable predictors. Speaking only for myself if I become bedridden from this miserable disease at least I will know I tried every thing available to prevent it. Other have different view points.

I'm guessing your physician recommended a spinal tap? If that is the case I would trust their judgment and do it. Best of luck to you.

Thanks for the feedback. What is CIS? Also regarding my doc, I have been to him once. He seems very old school in that he refused to believe diet even has the potential to cure or that Terry Wahls experience is real. I would like to also see a more progressive doc and see if they too recommend spinal tap.

Regarding fighting MS with everything, do meds really help it as in slow demyelination? Or just mask symptoms?

[pennstater]

Referencing brain MRI, did you mean hey found lesions, but were inconclusive? Was it with contrast, so was there current activity lighting up?

Lots of things can cause the asleep feeling you have. If you go to a Dr. Saying you suspect MS, they may not take you serious, figuring you googled...then they tend to chalk it up to anxiety.

You need to present your systems, detail how long, and if anything makes it worse. Did your old doctor do MRI of spine to see if lesions there andvto rule out strctural issues? Or any other types of test, like comprehensive blood panel which helps rule out MS mimics?

I didn't need a spinal tap for diagnosis, as combo of brain and spinal MRI, along with bloodwork was enough.

As for Wahl's diet, I know someone who followed it for 3 years, but still progressed. If you choose to do it, make sure to take supplements for nutrients that will be missing in your diet. Eating healthy and limiting foods that spike inflammation is always good. Most neuros seem to recommend following a heart healthy diet. The tough part with RRMS is that you don't know if diet resulted in improvement or just would have remitted anyway.

As for meds, some are to slow disease progression, often referred to as DMT ( disease modifying therapy). Others are for symptom management. I am not sure if any exist for the numbness alone...my right hand/arm have been numb for years.

I hope you get answers. MS is more a diagnosis of exclusion, after all else has been ruled out.

Good luck.

[Seasha]

Hi Miggity and welcome!

This is a shot in the dark, but when you mention numb feet and hands being more intense upon wakening, I'm wondering if what you are experiencing is some structural (disc) problems with your spine which could very well cause numbness. Have you had an xray or MRI for your spine?

CIS stands for Clinically Isolated- this describes a first clinical episode (flare or exacerbation) with symptoms suggestive of multiple sclerosis.

With MS there is a certain criteria one must meet in order to get a proper diagnose. The NMMS (National MS Society) states:

There are no symptoms, physical findings or laboratory tests that can — by themselves — determine if a person has MS. The doctor uses several strategies to determine if a person meets the MS diagnostic criteria. In order to make a diagnosis of MS, the physician must:

Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND

Find evidence that the damage occurred at two different points in time AND

Rule out all other possible diagnoses.

You might want to read more about different diagnosing tool here - http://www.nationalmssociety.org/Sym...agnosing-Tools

And also, what good would a diagnosis do me if there is no cure?

If you do get a dx of MS, it is highly suggested by many doctors that being on a DMT right at the beginning will slow down progression, thus causing less damage in the long run.

Good luck in any new findings. You might want to search for a different doctor!! My first Doctor was "old school" when I visited him with my first flare many years ago. He dismissed my serious vision problems as me having a nervous breakdown

[Fed Up]

I would strongly suggest you take the spinal tap.

Once and IF you age enough for your symptoms to become a constant nuisance, diagnosing MS after the age of 55 is frowned on by medical community.

A neurologist said to me: "We stop chasing that diagnosis after the age of 55. "

If you KNOW, you might do better.

Like she said, "It could be related to spinal" issues. If you are still fairly active, it is doubtful you'll have any issues with the spinal. fed

[TaoWarrior]

Miggity,

When I first presented with Optic Neuritis MS was ruled out based on MRI alone. I went 3 more years without bothering to see a Neuro. I had some classic signs of MS but they were mild enough that a young healthy athletic guy could ignore them. Lhermitte's sign, Some numbness, a bit of weakness in the legs a pseudo rash on my arm, muscle spasms and vertigo. Each one I looked up online each one had a dozen possible causes but also matched MS. Put it together and there was a pretty convincing picture. However they never lasted long and I always seemed to recover fully within a few days so out of sight out of mind ya know.

Well cut forward 3 years I had a bad case of optic neuritis hit in my other eye went to neuro I had gone from 1 inconclusive lesion 3 years ago to 14 very conclusive lesions. April 2016 will mark my decade of diagnosis mark I have been on DMD's for all but 3 months of those 10 years (had to be DMD free for 3 months before I started the Gilenya study). Today marks the third bad day in a row where I can barely walk let alone play basketball with my son or go for a walk around the lake with the family. I missed all the mall trips this Christmas and have gotten to the point as a guy where I actually miss those mall trips.

If I had gotten a CIS DX or had followed up on any of the things that happened for those 3 years I can't say I would be better off today but 14 ignored lesions had to take it's toll and I know for a fact I wouldn't be any worse off.

The Spinal tap I had in 2006 to confirm the MRI results was the worst medical experience of my life, I had a CSF leak that left me flat on my back for a week afterwards but getting started on DMD's did slow the progression I went from 4-5 relapses a year to 2. I am hesitant to tell anyone to get a LP after my experience but if your doc thinks they can get you a CIS DX and started on DMD's it's worth it.

As far as diet goes I am a vegetarian who primarily eats organic GMO free products. Not Paleo but very healthy. I have lived that way since almost a decade before MS even showed up. I ran a couple miles a day and lifted weights. I was the picture of health, in fact take away my MS and I still am. No heart issues, no diabetes, low cholesterol etc. I hope it is not MS but I would follow the doctors orders to make sure and if it is don't be me start a DMD.

[KatieAgain]

Diet will not cure MS, but it will certainly help with symptom management and overall well-being.

My MS was very mild when I got Dx. That certainly changed. It is usually a progressive disease.

I avoid lumbar punctures like the plague. But if it helps point the docs in the right direction, I would have one.

Good Luck...hope it turns out not to be MS.

[hunterd]

WELCOME TO MSWORLD!!!!!
I would also recommend getting the lumbar puncture. When I got my lp done . It was no problem afterwords. You are ready have the link for the NMSS, I would recommend that you look up anything you have questions about. If you do not find the answers come back and ask here.

[JerryD]

Hi and welcome to the boards. I suggest that you do a spinal tap after you have had any and all tests that can be done. I didn't see that you had the MRI test with Gd.
That's pretty important for the doctor to see the lesions. Good luck

[Miggity]

Thanks for the feedback guys. I have not had contrast done because my creatnine was too elevated.

So the order of tests I should request prior to spinal tap or LP is what?

1) MRI of spine

2) ?

Also regarding CIS is getting such a good thing? I am getting the impression we should WANT a positive diagnosis to get meds to slow progression? Also, how hard it CIS to get? Will some docs do it and others won't?

[thelegendlc]

Spinal tap minor

In my experience the spinal tap was a very minor procedure. It sounds much worse than it actually is. Also, the Dr. Wah diet I don't believe is going to cure anything. Someone needs to show me the science.

[Miggity]

In my experience the spinal tap was a very minor procedure. It sounds much worse than it actually is. Also, the Dr. Wah diet I don't believe is going to cure anything. Someone needs to show me the science.

Apparently there have been clinical trials. Have not seen them however. Then again I have not looked!

[Seasha]

There is an ongoing clinical trial of Dr Wahl's paleo diet along with the neuromuscular electrical stimulation that she utilized. Find them here - https://clinicaltrials.gov/ct2/resul...&Search=Search

[dawlfin]

Before any more tests!

Before you have any more tests, get short and long term disability insurance! ! Once you get a diagnosis it is too late.