Told not MS / some sort of neuropathy

[lisamaggio]

Hello Everyone,
Well I was told by my neuro that it was not MS but some sort of neuropathy. She still doesn't have a firm dx but said she will get to the bottom of this one way or another. The spot that was seen on my spine MRI was "atrophing" of my spine near my spinal fusion I had one year ago but it still doesn't explain the incontinence. The atrophing is at the C4-5 level. Incontinence has to come from the lumbar spine. At least she didn't pat my head and send me on my way. She does believe me and does think there is a problem but can't dx yet. Whatever it is it sure mirror's MS. I have all of the sx of MS but something else is causing them.

UGH!! I am so frustrated! I know you all can relate to wanting a "name" to what is wrong. Then I feel I can make a plan of attack. But you can't attack what you don't know. (Does that make sense?) She is going to read my MRI scans from before my fusion surgery to see if there was any atropy then. I guess then she will let me know what to do next.

Well thanks for listening! It is a comfort to know you all understand because unless you have been thru this you just don't get it.

Lisa

[shoshin]

Glads the Health Pages were helpful. I think relapses and remissions are one of those things that sound so clear in abstract explanations, but are really hard to figure out in real life.

You might mention those patterns to your neuro if you haven't and include that in your timeline (with lengths of time if you can). There is at least one kind of PN that has a relapsing-remitting pattern, but I don't think that's what she thinks you have. Most PN is stable or gets worse so far as I know. So this might be useful info for your neuro.

Hope your numbness is still improved.

sho

[lisamaggio]

Hi Sho,

I just read the info in remission/relapses and I understand better so I answered my own question.

Lisa

[lisamaggio]

Hi Sho,

About being in remission - Since the bowel incontinence started last Nov, It has gone away and returned a couple of times. So it wasn't absolutly a constant for a year. How long it stayed away I don't really remember. And the bladder incontinence just started late in the summer.

I'm not really sure which part of my spine is atrophying - the spinal cord or the bone itself. That's a good question to ask my neuro.

I thought I was going to have a really great day when I woke up but as the day went on I started to forget things. For example, my daughter was talking about a TV program we watched last week. I told her I didn't see it and she said yes you did. Don't you remember? I honestly  could not remember what it was about or remember that I  had even watched it. Then I forgot how to get to a place I had been many times. I just couldn't organize my thoughts to think what streets to take. It really freaked me out! When you go into a remission do ALL of your sx go away or do some go away and others get worse? Just maybe my neuro is right and I don't have MS if my sx are not typical.

To WAF,
Ouch!! That was harsh! I have to disagree with you, I think my neuro is very interested. I don't think she is blowing me off. She spent half of a day that she was supposed to be off, on the phone with my insurance company trying to get an MRI approved that they had denied. She calls me with test results rather than making me wait until a scheduled appt. I think the reason she said no to MS was because w/out clinical proof she has to dx me with "possible" MS. She doesn't want to give me a "possible" anything. She wants to give me a "positive" dx. I am not done with testing. She wants to do a EMG (which I don't want to do) and she is scheduling something else but I forgot what it is.
I hope and pray your opinion is wrong.

Lisa

[shoshin]

Oh, and I forgot to say that a year is a bit on the long side to wait for a remission so if you have MS, you're very lucky. I read somewhere (not sure now how current it was though) that 90+ percent of damage in MS that is sustained for six months is permanent. But, like everything else with MS, there are exceptions.

sho

[shoshin]

Wow, you've got quite a lot going on. You can link to your journal by cutting and pasting the URL from the address bar like http://www.medhelp.org/user_journals/show/132818?personal_page_id=832194

I don't know that your symptoms sound typical for MS, at least early MS, but MS seems to be atypical more often than not.

If you have atrophy or lesions in the cervical spinal cord (in the central nervous system) then it can affect anything from there on down. If it's the peripheral nerves as they exit the spinal cord, it would only be at that level. Or is the actual spine (bone) that is atrophying?

That could be a remission. I'm glad you feel better! I think remissions often they take place slowly as the body heals, but I imagine they could probably happen suddenly, too. I am not an expert on this, though. You might check out the health page at http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Relapses--Pseudo-Relapses-and-Remissions/show/372?cid=36

I hope the neuro keeps digging for better answers and that you continue to feel better.

sho

[MsWobbles]

I disagree with the majority here about your neurologist:  Even though she speaks nicely to you about finding the cause of your symptoms, I think your neuro is blowing you off.  Why?  Because I think she eliminated the possibility of MS way too quickly to really have been as concerned about your situation as she says she is.  If she were really interested in getting to the root of your problem, she would at least have kept MS on the table as a consideration, while pursuing other possibilities.  But she would not just say to you categorically that "it is not MS."   MS isn't that easy to  eliminate (as we have seen with people who had negative tests and yet still had MS) and you certainly have had symptoms compatible with MS.

I suggest you hook up with Fluffy'smom's neurologist:  Now THAT one sounds truly interested!!!

Good luck sister Limbolander!!  I'm pulling for you and all the other Limbolanders!!

WAF

[cainer]

YES!!  SOOO GLAD U  R   BETTER!!  HUGS   TICK

[lisamaggio]

When I got up this morning and used the restroom, the numbness was gone!!! All systems below the waist seem to be working normally for the first time in 1 year. Is this a sort of remission?

Lisa

[lisamaggio]

Thank you so much for taking the time to give me your info. I took your lead and created a time line for the past 21/2 years. I am not as computer literate as you are so I don't know how to get the link posted here but it is on my journal page. It felt good to get everything in black & white. Sometimes its hard to remember everything so it's good to have a record of it somewhere.

It seems to me my neuro should order a SSEP test next. I am going to ask her at my next appt.

Thanks again for all of the info.

Lisa

[shoshin]

I'll try to give you the short version. If you want the long version, click on my user name and look at my journal or go to http://www.medhelp.org/user_journals/show/38044?personal_page_id=583725.

9/01 Neuro #1 was convinced I had MS until the MRIs (brain, c- and t- spine) all came back normal. Then he said I had idiopathic peripheral neuropathy. My EMG/NCV at that time was normal so I'm not sure what basis he had for this conclusion other than that the MRIs were negative. I did not have any more MRIs for six years until I got to the neuro who dx'd me.

It's true that my early symptoms were sensory and probably fit the PN pattern better. I was not having obvious relapses and remissions (are you?) My symptoms were fairly bilateral and started primarily in the feet and ascended. After a while, I had numbness and paresthesias in my legs, hands, arms, face, skull, abdomen, etc.

2004 Saw neuro #2 who agreed that I had PN. Did another EMG/NCV and concluded that it was mildly abnormal for sensory neuropathy (still can't explain that except that I think he tried too hard and he wanted to set my mind at rest by giving me a clear-cut physical cause).

After a while I also started to have balance problems (which could potentially be attributed to PN and numbness in my feet) and weakness when walking for a long time or working in the garden. I sometimes got so I couldn't stand up if I didn't sit down and take a rest.

In 2007, I went to see a neuro who specializes in PN in the hopes that he could unearth a cause. They can't really do anything about PN except symptomatic stuff if they don't know what's causing it. One thing he told me is that most of the people who get idiopathic PN are in their fifties and sixties and have painful small fiber neuropathy (none of which applied to me except possibly the small fiber bit). The PN neuro did a lot more tests. There are a lot of neuro things that can cause the same symptoms so he tried many things to narrow it down.

The test that put me on the path to dx was the SSEP (somatosensory evoked potentials). This test measures the nerve signal from a stimulus to the end of the peripheral nervous system/beginning of central nervous system and then to its arrival in the brain. My PNS signal was fine, but the CNS signals were delayed or did not arrive in the brain. After that, the PN neuro said I had a problem with the CNS. He didn't think I had PN anymore because the CNS problem could explain all my problems (although you can have both types of problems).

I've probably left something out, but hopefully this gives you some ideas.

I have never head of an EMG/NCV of the rectum, but perhaps that's just my ignorance. It does sound unpleasant.

sho

[lisamaggio]

Yes, the neuro did say peripheral neuropathy. The cause she said could be from my spine atrophing at the site of my fusion (C4/5, 6/7), so it is putting pressure on the nerves.. She does want to do an EMG/NCV but I'm not sure I want to go thru that. I had one on my arms and legs and didn't like it.. She wants to do it in my rectum, and I do mean "in". There is most likely nothing except biofeedback that can be done for the incontinence so I'm not sure I want to go thru with that. Most likely the nerve damage is permanent. I take imodium whan I know I am going somewhere and need to control it. I also try to control it with diet but those remedy's do nothing for the bladder problem. Less coffee!!!

I've also been told that my sx's are atypical. I am not following any pattern that could lead to a simple dx. What were your sx's? Did you have MRI's that were neg during the time you were told you had PN? What led to your dx of MS? I still think it is MS but the MRI's are saying otherwise. Does the doc still say you have PN and MS or just MS is causing all of you sx's?

Your right that incontinence doesn't only come from the lumbar spine. It can come from your brain as in MS. But it doesn't come from nerve damage in the cervical spine. That's what I meant to say.

Thanks for your info. It is interesting to hear from someone else who is experiencing kind of the same things I am. I am really looking forward to hear what led to your MS dx.

Lisa

[shoshin]

Neuropathy usually seems to refer to peripheral neuropathy, which is a problem with the peripheral nervous system outside the brain and spinal cord (rather than a problem of the central nervous system, like MS). Did you have any tests for this? Usually they do an EMG/NCV, although this only looks at the large fiber nerves. There are also tests for small fiber neuropathy. You could still have this without any positive test I think (at least they told me I did).

Did she say why she thought you had neuropathy? I was actually dx'd with idiopathic (cause unknown) sensory peripheral neuropathy for six years until I went to see a peripheral neuropathy specialist who did more tests and decided I had MS. I wasn't really having obvious relapses and remissions and the pattern of my symptoms was probably more typical for PN. I think my situation is pretty atypical, but I hope the neuro follows up with more testing. Also, if she does decide it's PN, push for testing to find out the cause as the number of people who end up with "cause unknown" really varies depending on where you go.

I am not sure that it is true that incontinence only comes from the lumbar spine. MS doesn't affect the lumbar spine and plenty of people with MS have incontinence.

sho

[cainer]

yes!!  you are lucky to have a dr. that is listening.  hang in there!!   let us know      tick

[Lulu54]

Hi Lisa,
You have what everyone should have ... a neuro you can work with.  Even if it is not MS, you still deserve answers.  Having a name on it makes fighting any battle so much easier.

I am glad to hear she does not think this is MS - I hope you get some firm answers soon.

be well,
Lulu

[ginsa]

I have an un dx'd neurological problem that I can no longer afford to see a Neurologist for. I may never know the answer to what is causing the problems. But when I was told I might have MS I started looking online for more info. I came across LDN ( Low Dose Naltrexone ) and started using it. My Neuro wouldn't rx it, so I had to get it from an alternate source. I decided I had to take my health into my own hands and my results on LDN have been promising. The numbness, tingling and detached feeling in my left side are gone while I'm on it. Also the facial tics and palsy.

I hope you can get a difinitive dx. It's frustrating not knowing, and the search for answers can become too much of a distraction to enjoying life.

[lisamaggio]

Thanks to both of you. I will keep you all posted on the progress of a dx.

Lisa

[Charley123]

I agree with Alex.  Even with a diagnosis the unpredictability of MS is still frustrating.  I was diagnosed with possible MS and am on meds that seem to be helping.  It helps to remember that you are in charge of your body, not the docs, and that you are the one who can decide what treatment is best.   Several members here, have talked about alternative health care that helps with their symptoms.  Personally, I believe that covering all bases is a good thing. This is a good forum to vent and to get help, hugs, Charley

[HVAC]

Sorry for your frustration. I am glad at least the Neurologist is not blowing you off.

Ironically if you get an MS diagnosis except for giving yourself injection to help it from progressing there are no easy answers either.

Keep us posted.

Alex