Neuro said no MS... but I'm not convinced

[curlgirl]

I was expecting to receive the diagnosis today.  After all my research, MS seems to be the only diagnosis that explains all my symptoms.  But the neurologist said there was no sign of MS on the MRI's.  

I’m only 34, and a mother of a beautiful baby boy and wife to a wonderful husband.  My primary symptom currently is foot drop in my left foot, with numbness in my foot and part of my leg.  The neuro did a nerve conduction study and EMG, and he thinks that it's being caused by nerve compression/entrapment behind my knee.  He put me on a 6-day pack of steroids and said that if there's no improvement in the next week, then I'll need to have it surgically repaired.

The reason I'm not convinced is that the foot drop is not my only symptom.  It's just the most significant one today.  I've had the foot drop / numbness for over 2 weeks, and when it started, I was sitting in a meeting with my legs crossed.  When I uncrossed them, my entire left leg from the knee down was completely numb and has only partially improved over the last 2 weeks.  Nerve compression would make sense, since my legs were crossed at the time… but it doesn’t explain any of my other symptoms.

A few days ago, sitting at work, I got this strange, very warm sensation sort of “washing over” both my legs and feet.  It “washed” up and down, and lasted about an hour and then went away.  I’ve also noticed some milder numbness in my hands at times, but I can’t be sure that I’m not just hyper-sensitive to everything right now and maybe this is a normal thing.

I had symptoms 5 years ago also.  In 2005, I went through a 2-3 week period where various parts of my body would go completely numb for a while, then go away.  I was referred to an orthopedist under the assumption that it was a pinched nerve, but the C-spine MRI showed nothing.  The ortho did a round of bloodwork to rule out Lupus, vitamin deficiency, diabetes, etc. and found nothing, so he referred me to my neurologist.  Neuro did brain scans and found nothing, and basically sent me on my way with no explanation.  He said it could be viral and may never come back again… or it could come back and we may eventually figure it out.  He said that MS is generally not diagnosed the first time around.  About 6 months later, in a “hot yoga” class, my right foot went numb.  We repeated the scans, but still found nothing.

My neuro said today that if MS had caused the episode in 2005, then those lesions would definitely appear on the scans today.  Is this true?  If I’ve had the disease for 5 years, can he be absolutely certain that it would show up on the MRI?  He also said that it’s unlikely that I would go for 5 years without any symptoms, but I have read stories where this happens.

I don’t know what to do next.  I guess I will take the steroids and see if the foot drop improves.  But if it doesn’t, I don’t want to go through unnecessary surgery if he’s wrong.  If it is MS, then could I still benefit from surgery, or could that make it worse?  Should I seek a second opinion from a different neurologist?  Or do I let this go away and wait for the next round of symptoms to see if lesions show up?

[curlgirl]

Thank you to all of you for your comments.  It is so refreshing to finally find people to talk to who know first hand what I'm going through!  Your feedback has helped me to formulate a plan of attack for now....

I started taking the steroid pack today.  It's a 6-day tapered pack, and my neurologist said that I should see some improvement by the end of this period.  If there's improvement, then we can assume that the nerve damage will gradually heal on its own over time, and there's no other treatment necessary.  

If my foot doesn't improve at all over the next week, then instead of seeing the surgeon like he recommended, I think that I will seek a second opinion from an MS specialist.  (I called the Nat'l MS Society today to get a list of MS specialists in my area... and I was surprised to see that my neuro is on the list with "MS expert" in his credentials.)  I just don't want to go through surgery unless we are 100% sure that it will fix it.  From what I've read about foot drop, it sounds like if it's caused by MS, then surgery will not help.  

So... I'm in the waiting mode for the next week.  I'll keep you all posted.  Thanks again for listening and helping me!

Kristi

[StormyRenee]

Hello & Welcome,

I am sorry you are going through this...I am only 35 and for some reason Autoimmune disease in general likes to strike us when we are in our so-called prime....

My problems started a little over a year ago.I in the beginning was told I was anorexic and sufferring from panic attacks.Then a Neuro dx'd me with Transverse Myelitis and migraines. That same neuro statred to talk to me about needing to start MS injections because of 15 lesions that were on my brain MRI. At this point I'm terrified but accepting because it makes since. Then I decided to change neuro due to some follow up issues.Boy am I glad I did. I called the MS society and got refered to an MS specialist in my area. She ( yes a woman) Looked at all my previous scans and tests.She also order a Lumbar Puncture and a host of other tests for some oddball things...I had my follow up appointment with her yesterday. I do not have any signs of MS at this point in the game and my chances are only about 5% of developing it.  I like the fact that she is not telling me that I 100% do not have MS because she does not claim to predict the future( like so many neuros do).Because of my symptoms it is still a possibility.
The point of my story is that you need to see an MS specialist. Not all neurologists are MS specialists and dont let them mislead you other wise. Also having a female neuro is great. She doesnt freak out if you become a bit emotional.She understands what its like to be a woman. It make things so much easier.

You need some answers from some one qualified to give them!

Please Take care, Theresa

[MrsAristotle]

OMG I had to chuckle sorry not at you but what was told to you.................................

My neuro said today that if MS had caused the episode in 2005, then those lesions would definitely appear on the scans today. ##

I made a HUGE MISTAKE with my second opinion as I bought my notes.

I found straight away in 1982 I had the same symptoms I have now..........

So I said to him could this have been the first attack of MS for many years.

He said....IF I HAD MS IN 1982 then he would expect to see a LOT MORE on my MRIs.

NOTE I hasten to add he said a LOT MORE, which surely means there was something on there but not enough.

The POINT IS though that MS leaves scars but scars surely can heal............

I know of one girl who was ill for over 15 years got told it was all in her mind nothing ... nothing...... because all her MRIs came back clear.

Now she is totally disabled and finally got the diagnosis because the last MRI showed up LESIONS, because they were probably always there but they can HIDE. The central nervous system is a vast area. AND I HASTEN TO ADD, she wasnt disabled because of the MS not really she just GAVE UP. Since her diagnosis she has been showing signs of improvement in HERSELF because she is more determined.

Do you want MS hell no. BUT surely any doctor with a brain would put the incident in 2005 and now together.

I would no way have surgery on a knee unless I knew for certain it wasnt something else.

You say it would be unlikely to have MS because of no symptoms in the last 5 years.....

Well what is a symptom?

It could have been anything unusual that wasnt hurting you but simply something like dropping keys on the floor ,,,,,,, dropping them more often (I did that).

Or just suptle things like a bit of off balance.

Perhaps a bout of blurry vision.

IT doesnt have to be so bad it hits you on the head with a mallet.

I would right now take the tablets and see how they go. And WAIT.

MS can take years and years to show up. 10% of people diagnosed with MS have CLEAR MRIS. That is a huge amount of people.

In UK 100,000 people are known to have MS. Work the maths. So if 10,000  turned up at one neurologist he would be in for a shock LOL.

Out of 100,000 with MS , 5% are misdiagnosed and should have Hughes Syndrome.

A lot of people are misdiagnosed with MS and vice versa which shows to me that the so CALLED EXPERTS are not as EXPERT AS THEY THINK THEY ARE.

Diseases do not know they have to conform to certain standards. Every bodies own system can cope with things differently which can mutate results.

So wait for now, do what you can to keep really healthy watch your diet and do exercise and enjoy your baby and your husband.

Keep a diary. If you have a symptom think about what you did that day, what you ate etc.

Some people with MS for example should avoid dairy and red meat.

You are NOT going to get a diagnosis of MS even with a second opinion they just dont work well rarely anyway its just more money in the coffers of others.

Like I said enjoy your life...... take your tablets...and WAIT..

Big hugs from weird ....bad and mad Maria LOL.

[silkcut]

Hi curlgirl

Welcome to Limboland, I'm sorry that you have to be here though.

You've clearly thought about it all and done your research, you want answers and to get well. Yet you're coming up against the same thing as most of us Limbolanders : medical inability to diagnose anything conclusively. It's immensely frustrating.

One of the reasons your post rang bells for me is that I was in a similar boat 6 months after my son's birth nearly 30yrs ago. Left foot numb, as it had been increasingly during pregnancy, and then I started to get other symptoms like eyesight problems and altered physical sensations. The neurologist I saw told me I'd been reading too many women's magazines. (Me, who never read such publications, tch!)

It was nearly 20yrs later that an xray of pelvic area because of an accident revealed a hidden spina bifida. The radiologist commented that uterine pressure could have been causing nerve compression and damage back then.

I learnt then that nerves do not go dead for no reason! And that I don't suffer from wimmy hysteria or whatever many medics like to ascribe our weird symptoms to.

Yes, I've personally known people who've been eventually diagnosed with MS whose symptoms have remitted for years. But that's so anecdotal of course and each body is so different. The involvement now of your right foot now would appear to suggest a more central cause of nerve affect.

What do the people over on the MS Medhelp board say? They're very knowledgeable and helpful.

I'm a little surprised that local surgery is on the agenda so quickly. I don't know whether it's just a UK thing, but here the neuros can let people go for years without intervening surgically even when it's an obvious local never entrapment (happened to a good friend of mine).

Another thing I've learnt is that one neuro's 'nothing on brain scans' is another neuro's 'hmm, that's significant, let's investigate'. Unless you see the scans yourself and read the radiologist's report in the original, I'm not sure it's safe to trust a glancing 'nothing there'.

Incidentally, it took about 2yrs for my left foot to be restored to more normal sensation after my son's birth. I suppose it took that long for the lumbar nerves to recover. Also I didn't have that problem to anything like that extent during second pregnancy.

I'm sure other more knowledgeable  Limbolanders will be able to say more than I can about MS. Meanwhile, keep us posted!

bestest wishes
samxx