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582777 tn?1298456914

What the...? Only "whole limb" numbness counts as an MS symptom?

Further to my neuro appt last week I was thinking about something she said that didn't really gel with all the anecdotal evidence on here and elsewhere about MS symptomatology.

My main symptom is patches of numbness on both feet (not symmetrical), as well as reduced sensation in patches elsewhere on my body, including chest, face, arms, knee etc. The biggest totaly numb area is barely the size of my babies footprint.

The neuro I saw recently said, in relation to the numbness, that it's not really an MS symptom because when a nerve is damaged it affects whole limbs, not patchy spots on them. Like, I should have all down one leg numb, not just a bit on my feet.

This just doesn't make sense to me! Does anyone else find this odd, and/or has anyone been dx'ed with MS through having patches of numbess as a presenting symptom?

Cheers,

Nonny

(Safe in QLD below the cyclone zone).
17 Responses
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Avatar universal
Nonny there's a T3 at RBWH. I had one when I was admitted there 14 months ago. The waiting list is long for non-urgent (6 months I think) but maybe it's worth a shot?
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582777 tn?1298456914
The problem with the T3 MRI is that the only practise in Brisbane that has one is not Medicare approved. I looked into this before my first MRI as I'm horribly claustrophobic and wanted to go there for the wide bore machine (which also happens to be the T3 one) to help alleviate that, but they said I would need to pay the full fee (almost $1000!) and wouldn't get a penny back from Medicare. :(

I'm going through Greenslopes Private Hospital instead, and get all but $120 back from Medicare for that one.

COBOB - they never said the nerves were damaged, that was just my wishful thinking that it was really just some localised damage in my feet and nothing more sinister than that. I actually had a 100kg person fall backwards and step on my right foot by accident almost 2 years ago and still have bruising from that! Pity the pains and numbness is in the other foot as well or I could have explained it away thus.





Helpful - 0
Avatar universal
If you had an MRI on a T3 machine it should still be partially funded by Medicare, I had to pay a gap of $120 when I had it done at the Private Hospital, and it was free at the public hospital (I am lucky because where I live we only have T3 machines), but I was inpatient to get my last MRI done and there was a 2 week wait at the public hospital so I went private, you should only be out of pocket about $120, it should be the same gap all over Australia I would think.

What Bob says is correct, I have pain syndromes which my neuro reckons is because my wiring is stuffed and my messages get jumbled causing pain.  I can brush a part of my leg and it can cause intense pain, weird stuff.   Apparently Sandstrom won't give in until he gives an answer for what you have happening etc., I agree with you and understand where you are coming from, you don't want an MS diagnosis, just an explanation, I would want an explanation for all your lesions in your brain.

Take care,
Udkas
Helpful - 0
1453990 tn?1329231426
Your Neuro needs a refresher course.  Who says your nerves are damaged?  Different sensory nerves cover different parts of a limb.  They are called dermatomes.

Anyhow, MS is a disease of the Central Nervous System, not the peripheral nerves.  I get an ice pick pain in my right foot and I think "Oh, lesion in my left parietal region is making me feel like someone stuck and ice pick in right foot."

All the EMGs and NCSs will never show when a brain lesion is creating "Phantom Pain."  When CNS is lying, the pain is just as real, but it doesn't need to follow a dermatome or a whole limb.  Just as your brain can respond to a pin ***** on the side of your index finger, it can "create" the sensation of pain in the same place.

Bob
Helpful - 0
582777 tn?1298456914
Scrap that last comment - I did some more googling and apparently it's on 1.5T at the place I had my MRI and the only place with 3T isn't Medicare approved so you have to pay the entire amount yourself.

Helpful - 0
582777 tn?1298456914
Just checked the MRI disc - there are references to T1 Axial, T2 Axial, and various other things that include either T1 or T2 in them. Does this refer to the strength of the MRI?
Helpful - 0
582777 tn?1298456914
I'll jot down Dr Sandstrom's name for if/when I think I need a 3rd opinion - I'm already feeling the pinch of having to pay for the first two opinions in the space of a couple of months, not to mention another MRI *sigh.

I'm going to look at the last lot and see if I can find anything that says what strength it was.

I'm not even chasing an MS dx really... I'd prefer them to just say "look Nonny, you've done some damage to the nerves in your feet, it won't get better, but it won't get worse" and then I can get on with things. But we're considering some major lifestyle changes right now (a move to the country and whether to have another baby) and a diagnosis of MS is serious enough to factor into those decisions if I do indeed have it.

I just wish they'd stop pussyfooting around and say yes or no, rather than "it looks like it, and nothing else can explain you, but we're not going to make that call until you have something new pop up".

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Avatar universal
Cheers Udkas........I wish I had bothered seeing Sandstrom while I was up there - not for a diagnosis, but to see if he is related to that old flame of mine........*sigh*.......always wondered what happened to him, but don't like sounding like a stalker :P

Oh and my error - it's Kerryn Green. Not Karen. Scarey bit is, she's like the head professor/lecturer on MS at Qld Uni. The self-appointed Queen of MS in Qld. She just looks like a fat bogan to me. Can I be sued on here?
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Avatar universal
I have heard nothing but brilliant reports about Sandstrom, from many forum members, so Nonny perhaps go there and get your second opinion or even 3rd.

Jemm, you have such a way with words that never ceases to make my day :-)
You have managed to make me smile :-)
I did wonder if you and Nonny had ended up with the same Doctor.

NONNY
Contrast is only useful to show active lesions, but I guess if they seemed to be enhancing it might have changed your diagnosis,
Good luck, maybe see Sandstrom sp?  

I would travel to see a good neuro, now that I have one it is definitely worth it.

Udkas.
Helpful - 0
Avatar universal
Oh, I just remembered, apparently Dr Sandstrom at..........umm I think he's at Prince Charles near Chermside........is good. Apparently. he has the same surname as my first (and only) true love so he can't be bad!
Helpful - 0
Avatar universal
Ah, Dear Dr Green. Yes indeed.  She gave me the s * i t s so bad. If my brain was working I'd tell you what she said to me that sounded so similar.......actually it was the MS Hug

I'd been having MAJOR spasms around my torso, the most painful being the muscles on the back right hand side around my ribs. I said really careful stretching helped a bit. SHE said "stretching and massage don't help MS cramps".

I gotta tell you, I saw her, Dr Henderson at RBWH, Dr ......oh blimey, I forget, another neuro at RBWH, and all three said "well, you've got MS lesions but we'll call ti migraines". I saw two junior neuros in RBWH - both from South Africa, and they said MS, but were overruled but the abovementioned knobs.

When I got back home to Canberra and saw the neuro here, Dr Colin Andrews (google, he's in the news), he diagnosed MS. That night, I rang my cousin  who is a born-and-bred Qlder and also has parkinsons, and said, "why the **ck did the Qld neuros not diagnose?" and she said "Cos they're all  ****ing useless".

Cross the border!  (though I much preferred Henderson to Her Ladyship, Ms Green)

Oh and don't forget, the prevalance of MS is about 8 times south of Sydney than up there, so those neuros see it WAY less.

Oh dear......

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582777 tn?1298456914
This lady WAS my second opinion! LOL The first one had the exact same non-commital diagnosis.

She did mention getting a lumbar puncture done but said it wasn't necessary yet because my symptoms weren't severe enough to warrant it, and might not be conclusive anyway.

I keep wondering if I should have had the contrast dye, but I declined it for the first MRI because I'm breastfeeding and didn't have enough EBM stored up to be able to take a day off feeding my baby. Maybe I should plan for the next one so I can have the dye.

I have a followup MRI booked for June, and she'll review things then but sent me off with the usual "call me if anything changes or you get new symptoms".

I live in Brisbane about 10 mins south of the CBD so wasn't affected at all by the flood. The heat and humidity is awful right now, and might be the reason one of my feet has felt tight, swollen and scorching hot for the last few days.
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Avatar universal
Hi there again,
I would be getting a second opinion. 17 lesions on your brain is a lot, especially for your age, I know some of us get lesions with age, from migraines etc. but did they give you an explanation for so many lesions.

Spinal lesions are harder to detect on MRI too.  Well obviously if you have a diagnosis of probable MS perhaps the neuro is waiting for something else to confirm then.

Have you had a LP done?

I have the same issues my toes and foot will go numb on and off for days but my symptoms are usually intermittent, but I have had my whole leg go numb too, weird stuff, I would perhaps get a second opinion then.  I hope your neuro is still monitoring you etc.

Glad you are not blown or washed away, I was in Brisbane when the floods hit, but was in a safe area, then went had a few days at Noosa and then back to the Gold Coast and will be back up there again in a few weeks, the heat would not be helping, although when I was up there it was not that hot.
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582777 tn?1298456914
I asked the nauero what else could possibly explain the numb patches on my feet and she looked straight at me and said .... "MS".
Helpful - 0
582777 tn?1298456914
Thanks for your reply.

She did say my sx all pointed to spinal lesions, but none were shown on my MRI. I've had one MRI of brain and spine, not sure what strength it was though. There were about 17 lesions on the brain MRI (counting only from one series of slices, so as not to count the same one from different angles), but they are not "classical" MS lesions.  I'm only in my 30's.

The numbness hasn't been all over the place at one time, and never symetrically placed... first there was one patch on my chest, then my feet had reduced sensation over a period of a year, and then got much worse with actual numbness and nerve pain over the course of about 2 - 3 weeks. The pain has since settled down, but the numbness continues in different places on each foot, and the reduced sensation comes and goes (for days or weeks at a time) in various areas.

I've had nerve conduction testing, which showed normal (?) or at least she didn't say anything was amiss.

I saw my GP today who wondered why I wasn't put on DMD's yet, and she didn't really understand that the dx was still only "probable MS", not "definite" MS.
Helpful - 0
Avatar universal
The information I was referring to was in an old post by Quix, who is a medical doctor who has Multiple Sclerosis, I tried to find it but was unable to, but if you have time you might be able to search it out.

Quix's posts were always informative, she was a great or still is asset to this forum, not sure but I think she is having some time out, you must get burnt out after being on here 24/7
Helpful - 0
Avatar universal
Hi there,
Glad that you are not affected by floods, cyclones etc., I am going to try and answer your question, but I do not have an MS diagnosis, but I think I understand what your neuro was meaning.

In answer to your question many people have been diagnosed with MS with just a tiny bit of numbness or tingling, they don't have to have an entire limb numb to be diagnosed!! So I would (although I am no neurologist disagree with that statement), but I think what your neuro may have meant is that for you to be experiencing patches of numbness in so many areas at once that it would likely not to be MS.
MS usually does not present on both sides at once unless there was a big lesion across your spinal cord, I think there is not real rules but to have a patch here and a patch there and another one some where else is more likely to be unusual, generally (well at least in my understanding you would have an area that could be large or quite small but it would be in that area that would be affected, as you recovered and the inflammation got better then hopefully so would that patch, then when you had a subsequent attack then you might develop a new patch and your old patch might get worse again, but to have patches on your face, feet, chest etc. may not point so much to it being MS.

Quix did a big thing on it in the health pages ( I think it might be titled does this sound like MS or what is MS and what's not) It explains it a little better.  

So in answer to your question I think your neuro is WRONG, I know people who have been diagnosed with MS with just a little patch of tingling in one area, but perhaps what she meant was that you had too many areas affected for it to be MS?  I am not an expert, I have been diagnosed with TM.

Have you had a brain and spinal MRI on a T3 machine?

Have you had nerve conduction studies done?

Has your neuro offered any other explanation?

I have CNS damage and I have areas of loss of sensation!!
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