Questions that hopefully someone can answer?

[Udkas]

Hi there,

I will give some history first and then I hope to seek some answers or opinions.  I am a limbo lander with no firm diagnosis but a neurologist who believes that I have TM.

12 years ago I had an episode of numbness, pins and needles, bladder urgency, incontinence that lead to me being hospitalised and on a drip with predinisilone for 5 days.  The neurologist at the time told me that he was 99% certain that I had MS.  Results of my brain only MRI was normal.  I was sent home, some what confused, told not to discount out MS.  I had a repeat MRI 2mths later, this time incl. spinal cord, also clear. Very poor machine, pics not that great. He repeated the MRI of both spine an brain in another 12mths, also clear.  My symptoms gradually lessened and I was left with just some leg weakness and few pins and needles, numbness etc. when I get tired or sick or stressed.

Now 12 years later it has raised it's ugly head again.  This time I decided to go to a new neurologist who specialises in MS and things like that.  I was convinced it was new because I had old symptoms and some new ones. This neuro believes that I have TM.  He ordered a MRI of brain and spine 12mths ago and it was all normal, but he thought it was all from 12 years ago.  I recovered from that episode and now I am having what I believe to be a new one.

Went to the neuro again and he thinks that I have definately got worse.  My reflexes are abnormal, clonus, hyper reflexia, I can't feel properly until half way up my back etc.

My problems are incontinence, urgency, burning sensation  in my legs, sometimes my leg gets so sensitive just my trouser leg touching it becomes painful, pins and needles but more numbness in my feet, my pubic area has gone so numb sometimes I am sure that you could put a tattoo on it and I wouldn't feel it, this has affected sexual function, I have wet myself when I have got numb.  My buttocks go numb or get a prickly feeling and I get lots of painless spasm/twitching.  I have prickly feeling in my stomach as well.  Altered sensation is a big thing.  My left leg has gone weak and heavy..

I was convinced that this time I had hurt my lower back but the neuro said that I might of hurt my back but it is coming from higher.  I am still not convinced that I don't have some type of nerve compression??

QUESTIONS???
DOes this sound like TM. Dr said back pain was from TM.  Can lesions in spinal cord be aggravated by movement? Can they pick up nerve compression on MRI?  I had a really bad day yesterday but my back seemed to have a burn to it and just like a whole band around it was was hurting, not too painful but my pubic groin area was terrible with burning.  It was definately aggravated by bending????  At the peak of all this I felt like I was becoming paralysed I was unable to feel my husbands penis inside me.  (I am glad nobody knows me here) but it made me cry.  And I am not overweight and have no other health problems.  I am going for MRI of spine very soon.

Sorry for the long post.. looking for answers.?

[jensequitur]

It sounds like TM to me - I have MS, and your pain symptoms aren't consistent with what I experience.  They sound more like some problem with the spinal nerves.

I know how you feel!  My pubic area is currently numb.  I wouldn't be too nervous about it - the nerves for touch have different pathways from the 'fun' nerves, and it's possible to have an orgasm even with no sensation in that area.

[Udkas]

Hi there,
I would appreciate anyones thoughts on this.

Can spinal cord lesions be aggravated by movement?

I am convinced that I have hurt my back but the neuro seems to be set on TM, may be I have hurt my back as well. Or perhaps I just make myself too tired.

Can spinal cord compression be seen on MRI?

I am also getting headaches that make my neck stiff and seem to be at the base of my head (back of neck head area) I feel sick when they come on, my neuro also thinks this is part of my TM or caused by my TM??  I get some face symptoms with headache and it makes my leg symptoms worse.

COULD MY PROBS Just be all caused by migraine headache? ? ?
Read my other post wtih my history... I heard that migraines can send you numb?

[Quixotic1]

Hi, I just saw your very appropriate request for some answers.  I'm sorry we didn't get to you.  I am going to go back and read your other posts to make sure I have all the details you have given us and I'll try to answer your questions.

Thank you for yelling out to us.  I'm glad you did that instead of going away.

Quix :))

[Udkas]

Thank you, I appreciate any comments, I am not upset for nobody commenting but just hopeful to gain some info so if my upcoming MRI is clear I can put some more questions to my neurologist.  He seems to think it's coming from higher from his findings and is only doing my lumbar spine to please me, but I have noticed some things are worse my movement (perhaps I have two problems)

[Quixotic1]

First, Welcome from Down Under.  We have several of your countrymen here and I hope you can meet them.

First off I'm sorry again you weren't recognized.  You have told us before that you were depressed, and, I'm sure your are concerned about what all of this means.  I also want to say that it seems that you have a good thinking neurologist in that he knows that you can have lesions (both in the brain and the spinal cord) that are invisible - even on a 3t machine.

I'm going to review some of the other  things you have told us for the sake of people reading along.  13 years ago you had a episode of paresthesias in your hands and feet, bladder problems and visual problems.  You also had some weakness which was worse in your left leg than your right.  You had a Visual Evoked Response (the checkerboard test) that was abnormal (both eyes?) and your optic discs were pale.  You also had hyperreflexia with clonus in the ankles.  There was burning and cramping pain, I assume in your lower extremities.  An MRI on an OLD machine was clear.  You were treated with IV methylprenisolone (Solumedrol) for 5 days and the suspicion was that you has MS.  But, the doctors weren't convinced of that after another set of MRIs was noraml 6 months later.

After that episode you go mostly better, but the leg paresthesias would reappear if you were sick, fatigued or super stressed.  But, I gather you didn't have any real "attacks of symptoms, new or old, until just recently.  Now you are having the same old symptoms, but with paresthesias and numbness including your abdomen and bum.  You also had some facial numbeness (one or both sides??) and vertigo.  The numbness in your perineum (private parts) and problems with your bladder have returned.

Several months ago you saw a different neurologist this time and he did a 3T MRI of the brain and spine.  But, it was completely clear.  You are very depressed at the lack of evidence of your problems, but it sounds like the neurologist believes you.  Anyway, this guy's assessment is that you have Transverse Myelitis and that this newest flare up is a relapse of the orginal one.  The vertigo and facial numbness is being considered as a second problem of migraine aura even though you done't have headaches.

Now, you are in a third flare up and the left leg is numb and heavy BIGTIME.  No more facial numbness or vertigo with this flare up, but you are having muscle twitiches in the thighs.  Your big questions for us when you first posted were 1) Can the MRI be inaccurate? 2)  Could all of this just be migraine? 3) Could this be MS?

Now you are adding that you are having more urinary problems and now sexual dysfunction and the symptoms seem aggravated by movement, so you really wonder if the problem is a back injury with nerve compression.

This is enough to depress anybody as we all will gladly tell you.  I also need to tell you that I am not a neurologist and it seems you have a very good neurologist, so I am not sure I can offer anything more or better than he.

First, I don't think there is anyway in the world that all of this is from migraine disease or from being depressed!!!  It really does sound like you do have Transverse Myelitis which is a demyelinating disorder in the spinal cord (from a lesion which tends to go across the cord, instead of up and down.)  Now TM can be a disorder on its own or it can be a part of another larger disorder like MS.  All of your symptoms except the visual problems you had in the beginning, the vertigo and the facial paresthesias can be explained by a spine lesion.  And TM can have a relapsing course.  

There are a couple of things that I want to remark on.  The fact that you had proven optic neuritis (pale optic discs and abnormal VEP) make me think of a very uncommon disorder called Devic's Disease, NMO or NeuroMyelitis Optica (literally it means Transverse Myelitis plus Optic Neuritis).  This is a disease that mimics MS except that the lesions occur solely in the spine at or near a ssingle level and in the optic nerves.  This seems to fit what you have had (if you account for the vertigo and facial symptoms with another explanation).  Has your neurologist mentioned NMO to you?  NMO can be very rapidly progressive, but I believe that it can have a slower course also.  I am NOT an expert in NMO.  Also NMO is not common in the US, but is more common in persons of Asian ethnicity.

There is an antibody test that is available to aid in the diagnosis of NMO.  It is called NMO-IgG.  It is positive in (I think) about 70% of people with NMO.  The diagnosis of NMO mostly deals with having symptoms of transverse myelitis in which the symptoms are all explainable by a 1) spinal cord lesion that occurs at a specific location in the cord.  It often is very long and may extend 3 or more vertebral segments.  2) the presence of otpic neuritis or evidence of ON such as an abnormal VEP, 3) a brain MRI that does NOT suggest MS (mostly normal) and 4) the presence of NMO-IgG.  The diagnosis requires some of the above, but not all of them.

Can a person have demyelinating lesions that can't be seen by a 3T MRI.  Definitely yes.  The MRI is only as good as the machine AND its software.  Some software is better than others at making the lesions stand out.  Tests with the new 7T machines are demonstrating that they can pick up lesions that are invisible on the 3T machines.  This is proof that some lesions are "invisible" on 3T machines.

I wonder if the headaches are from swelling of the cord - which happens with NMO and would very likely cause a headache.  Just wondering, is your headache made better by lying down or is it better while sitting up?

So, after all of this - sorry to really be so long winded - I would ask if your neurologist has repeated the VEP, if he has considered NMO, and if he has considered a spinal tap.

I gave you a whole lot to think about and I'm sure you have questions.  Ask away, and I'll be on the look out for them.

Negative tests do not mean that something isn't wrong.  Your neurologist knows something is wrong.  TM is a real diagnosis and can be really disabling.  It is not a throwaway diagnosis.  And it can be a part of other things like MS or NMO.

Quix

[Udkas]

Hi Quix,

Thank you so much for all your information and taking the time out to reply.  I really appreciate your thoughts.  Your summary was very well written and easy to understand and gave an accurate detail of the story...

As for feeling depressed, I am feeling a lot better since just reading and lurking about on this site.  I think knowing that there are so many people out there with similar problems etc. makes me feel not so alone.  Also Gabapentin is helping a lot with symptoms. I think when I have the MRI I will have mixed feelings if it is clear. I don't want to have a neurological disease but I do tend to like things in black and white.  

Yes my neurologist is LOVELY.  He listens, does very, very thorough exams and explains why he is thinking what he is thinking, great at answering questions, even about the MRI machines etc... My last appt. was atleast over an hour long!!! but that was his fault as he kept prodding me..lol  He says I have lesions even if they can't be seen. He reckons in his opinion it is TM.

I think that it is and then I question it because I don't have MRI evidence.  If my MRI is clear I will have lots more questions.  My last lumbar puncture was 13 years ago and I was told it was normal but never did see the results.  My EVP was also 13 years ago but  I have not had it done this time but I think if my MRI was clear he was going to repeat the EVP tests to benchmark stuff.  I will ask him about NMO.

My headaches have only just started since this last episode and now they are making me feel sick and neck really stiff.  I think I will take more note if they ease off if I lie down.  I know my last MRI the brain was perfect but I don't think my spine was but it was still classed as normal.  I never got a copy of results. My neuro showed me the pics  and wanted to keep them.  He showed me the suspicous area.

What about bending can that make symptoms worse?  That's why I thought spinal cord compression? BUt I did suggest this to the neuro.. and can you see compression on MRI?  Thanks for your opinion I hate being in limbo but I'm not sure if I want to have TM either.  I didn't think migraines could cause all this but some people suggested it to me and confused me more.

Thank you,
Thank you so much for taking so much time to read and comment on my post.
Cheers,
Udkas.



I think if my MRI is clear this time I will ask about having a lumbar puncture.  I had one 13 years ago but