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BlsdMama

Let's play guess that disease... Sigh

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So.

 

So the lumbar puncture came back negative for oligclonal bands.  The CSF showed nothing unusual.  The blood tests were within the ranges of normal.

IgG serum in the high range of normal but still normal.  The only test result that was high was Albumin.

 

I do NOT understand.  

 

MRI showed white spots in three areas.  First dr. decided it was normal "for my age" and the second doctor (the head neuro at teaching hospital) said he felt it was not normal, especially considering that I am healthy with a healthy lifestyle.

 

But now what?  The leg dragging is about the same or maybe slightly worse.  The balance is way off.  Today is one of the worst days I've had so far.  

 

This is draining and frustrating.  Can someone turn themselves into a hypochondriac?  Serious question.

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So.

 

So the lumbar puncture came back negative for oligclonal bands.  The CSF showed nothing unusual.  The blood tests were within the ranges of normal.

IgG serum in the high range of normal but still normal.  The only test result that was high was Albumin.

 

I do NOT understand.  

 

MRI showed white spots in three areas.  First dr. decided it was normal "for my age" and the second doctor (the head neuro at teaching hospital) said he felt it was not normal, especially considering that I am healthy with a healthy lifestyle.

 

But now what?  The leg dragging is about the same or maybe slightly worse.  The balance is way off.  Today is one of the worst days I've had so far.  

 

This is draining and frustrating.  Can someone turn themselves into a hypochondriac?  Serious question.

I don't have any medical advice, but just wanted to say I'm sorry it is taking so long to get a diagnosis.  :grouphug: I hope you get some answers soon.

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MS is notoriously difficult to diagnose. It is not at all unusual to be on this sort of a roller coaster. I have been on the same roller coaster for over a year. Lumbar puncture came back clear. There was only a minor difference in the brain lesions on MRIs taken two years apart (well, maybe a tiny difference). Physical symptoms got worse. Latest diagnosis (as of December) came back as clinically diagnosed progressive MS. I wouldn't be surprised if even that diagnosis goes back and forth a bit before settling out. The clinical diagnosis was based on several factors, among them: pin prick tests on my legs (I couldn't feel it at all on the outer part of my legs, but could on the inner thigh and calf parts), an opthamologist report citing optic neuritis and loss of peripheral vision in my left eye, observation of my gait, cognitive issues, sporadic muscle twitches, and - of course - the omnipresent fatigue. My next step is to see an opthamologist neurologist and then I will go back to my neurologist for another consult. (FWIW, my neurologist is head of the MS clinic at a big city teaching hospital.)

 

Do you have another appointment with your neuro set up? What did s/he suggest you do next? I'm so sorry you're having to go through this.  :grouphug:

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So sorry you're going through this.  I'll ask a probably really obvious question, because I don't know all your history; have the drs checked for a something physical in the actual leg you're dragging? Is the loss of power because of something local right in the leg, and then the poor balance is caused from you not being able to control your leg?

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NOT HAPPY!!

 

O-bands are only present in a small percentage of people with MS. I don't have time right now to find you the studies.

 

HOWEVER, an elevated albumin level IS a marker of MS, as well as neurosyphilis, a couple encephalitis (es) (how do you plural that word?!!), and something else equally nasty that I can't remember.

 

Your Uni spec Neuro isn't releasing you, is he? He isn't THAT short-minded, is he?!?!?! 

 

Kris

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MS is notoriously difficult to diagnose. It is not at all unusual to be on this sort of a roller coaster. I have been on the same roller coaster for over a year. Lumbar puncture came back clear. There was only a minor difference in the brain lesions on MRIs taken two years apart (well, maybe a tiny difference). Physical symptoms got worse. Latest diagnosis (as of December) came back as clinically diagnosed progressive MS. I wouldn't be surprised if even that diagnosis goes back and forth a bit before settling out. The clinical diagnosis was based on several factors, among them: pin prick tests on my legs (I couldn't feel it at all on the outer part of my legs, but could on the inner thigh and calf parts), an opthamologist report citing optic neuritis and loss of peripheral vision in my left eye, observation of my gait, cognitive issues, sporadic muscle twitches, and - of course - the omnipresent fatigue. My next step is to see an opthamologist neurologist and then I will go back to my neurologist for another consult. (FWIW, my neurologist is head of the MS clinic at a big city teaching hospital.)

 

Do you have another appointment with your neuro set up? What did s/he suggest you do next? I'm so sorry you're having to go through this.  :grouphug:

 

Thank you for writing all that out.  I haven't had a follow up appointment - the results come across via electronic chart.  The test says that only 5% of people who get negative on the MS screening will actually have it.  i doubt I'm in that 5%.

 

I sound like such a whiner.  I will be glad if I don't have MS.  Really.  BUT there is something definitely going on OR I'm crazy.  There are only those two options so I'd really like to slap a label on it and get on with a plan, kwim?  I am so sorry that you are dealing with all this too.  He will call and talk to me and we'll set up another appt.

 

 

 

So sorry you're going through this.  I'll ask a probably really obvious question, because I don't know all your history; have the drs checked for a something physical in the actual leg you're dragging? Is the loss of power because of something local right in the leg, and then the poor balance is caused from you not being able to control your leg?

 

They have.  I went through an EMG.  I can have physical therapy if I want it but they believe I have something not right with my central nervous system.  I have hyperreflexia on the right side, clonus in the right foot, reduced feeling in the right foot, and drop foot, also right foot.  My right toes are also losing their mobility.  But the EMG was clear.

 

 

 

NOT HAPPY!!

 

O-bands are only present in a small percentage of people with MS. I don't have time right now to find you the studies.

 

HOWEVER, an elevated albumin level IS a marker of MS, as well as neurosyphilis, a couple encephalitis (es) (how do you plural that word?!!), and something else equally nasty that I can't remember.

 

Your Uni spec Neuro isn't releasing you, is he? He isn't THAT short-minded, is he?!?!?! 

 

Kris

 

 

I didn't realize elevated albumin was a marker - I actually couldn't find anything much except that low albumin is a marker of faster death in ALS .  That was a relief. ;)

 

He isn't done with me yet - the plan had been take the testing, he was pretty sure it would show MS, then pass me onto the MS specific clinic.  I'm not sure what's next.  He seems pretty on the ball so I suspect I'll have a phone call before the end of the week.

 

I am one of those people that divides my building toys in clear containers and labels them.  It makes me happy,

 

This not knowing thing is stressful. ;) 

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I'm also sorry that you are not getting obvious answers yet. Our bodies, and their symptoms, can be super complicated. Keep looking for answers and don't feel discouraged. It doesn't mean you're imagining things. Medicine isn't perfect.

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I forgot to mention that I had a local neurologist at first. He kept saying I didn't have MS. My primary care doc didn't put much stock in that neuro, so she told me to make an appointment at a MS clinic. I know well the frustration of not having a reason for bizarre symptoms. Hang in there.

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Lyme disease is often misdiagnosed as MS.  You may consider being tested for Lyme by a Lyme Literate Medical Doctor (LLMD).  

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SO relieved about the ruling out of ALS. Hope the MS will be able to be ruled out as well.

 

Two friends (both male) started experiencing foot-drop around age 45. Neither had ALS or MS. Both were due to a degeneration of the nerves in the spine. This article suggests possible spinal column causes (herniated disc, spinal stenosis, slipped disc, bone spur), all of which pinch and inflame nerves, leading to foot drop.

 

BEST of luck in getting to the root of the matter, so you can MOVE FORWARD into better health! Warmest regards, Lori D.

 

 

PS -- And SO sad about having to deal with the MS either for yourself or your child, Ethyl Merz and Mommytobees! :(

Edited by Lori D.
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I have a friend who was diagnosed with MS about 15 years ago. Within the last 5 years she has been told that it is mitochondrial disease instead. Might be something to look into? I'm sorry you are having a hard time getting answers. :grouphug:

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Will agree with someone upthread about Lyme. It most definitely shows up as MS on an MRI. It did with me but since they knew I had Lyme there was no concern about MS. Hope you find some answers soon.

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I was seriously ill for years, and misdiagnosed with a host of diseases.  I went years with an MS diagnosis, and we treated for it, and I saw multiple specialists who all had different thoughts, and ... it all turned out to be ... Lyme Disease and related co-infections.  13 co-infections.  Yes - 13.  I can't tell you how many specialists missed ALL of those diagnoses.  What made me the sickest wasn't Lyme Disease - Lyme Disease in a case like mine is a name for a constellation of diseases.  In my case, babesiosis (more than one strain) was the main cause of illness.  I don't have MS.  I don't have the bajillion other diagnoses I walked around carrying.  I had something treatable, and went years getting sicker and sicker, without treatment, and now I will have results of those misdiagnoses in the form of permanent damage caused by untreated chronic infection *in my brain* and every other organ ...  I have permanent damage, that I live with daily.  I will never, never be the same.

 

Sadly, you really can't "rule out" Lyme Disease, there's no reliable test to give a negative result.  You need an LLMD.  Have you considered finding a Lyme Literate doctor just to get a feel for his/her thoughts?

Edited by Spryte
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You're not a hypochondriac.

 

Something real is going on.

 

There are many conditions it could be that are difficult to diagnose.

 

The fact that it is developing so slowly that it is hard to diagnose is a good sign.  It means that whatever it is, it's progressing slowly.

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You aren't crazy.  You aren't making this up.  There is something wrong.  Don't second guess yourself.  Keep looking.  The answers are out there.  

 

:grouphug:  :grouphug:  :grouphug:

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Lyme disease is often misdiagnosed as MS.  You may consider being tested for Lyme by a Lyme Literate Medical Doctor (LLMD).  

 

Wouldn't hurt to find out, MS is in the top five misdiagnoses for Lyme.

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