Just Landed in Limbo Land

[sayccrn]

Hello, I am a 48 year old and I believe I have just been not so formally diagnosed with CIS. As my 2nd opinion Neuro, took me more seriously than the first. (Which seems to be an ongoing problem for people like us.)

He basically said, 'Yes, your symptoms are out of normal, but they are also out of the normal for MS. Let's wait for a second flare and then we can get more testing that should have been done during your first flare.'

Here's my story in retrospect. It started towards the end of last year. It started small with very slowly increasing symptoms. All sorts of things> Shaking, tremors, slight in hands, then legs, then you could even hear my voice shaking when it got to its peak. (No drugs, no etoh, ect.) By the time I went to my PMD, my tremors were so bad, my doctor looked at me, just looked, no exam and immediately wrote for an MRI and neuro consult. She just thought it was tremors, but that was just the most obvious one by this time. I had already had to quit work as my brain was not sharp anymore and I felt like I was going to kill someone that I was sworn to help. (I am an ICU nurse, or was.)

My brain was just off, really bad, foggy, forgetful, ataxic like my hands. I couldn't remember simple things and after almost potentially causing serious harm by a stupid mistake, I just couldn't go back, scared out of my mind. I am a very smart woman. Graduated Magna Cum Laude, (Would have been Suma, but online chemistry killed that chance! lol)

The day I had the MRI, I thought I was feeling about 80 % better. The grass needed to be cut, big mistake, it wasn't even that hot out and I usually cut it all summer long and no problems. Well, the neighbor saw me go down. It wasn't my heart, it was whatever this is, every symptom was so intense. After I got inside it slowly eased up and I was back to 80%.

The stupid first neuro, claimed it was 'just my fibro' and 'have I spoken with a counselor?' I almost got up and slugged him one! And 'yes you have white matter lesions, but that could be normal aging for a person your age.' Then he dug himself deeper, by saying: 'If you were 35y/o and had HTN we would expect to see these lesions, now if you were 35 and had these without any vascular history and your symptoms, then we'd be concerned.' I said: I'm 47 and have no vascular history at all, why do I have these symptoms then? You are making no sense.'

My doctor was appalled that he treated me this way. So, was I. She sent me to another one, and he was so much better, he actually did a full neuro exam. (benefit of being a nurse, I knew what one looked like.) He said it could be MS, but it's not presenting like typical MS would be. He said too, 'No it's not your fibro, Fibro stays the same and does not get worse over time.' The first 'doc' didn't even bother to get a spinal tap, so all I had was the MRI which showed a lot of white, bright lesions in all different areas, but notably in the occipital and parietal. By the time I went to the second one, I had almost stopped shaking and could formulate words in complete sentences again. So, he couldn't see how bad it was, But I brought my 16y/o daughter and he also asked her about it.

The height of this 'wave' of symptoms was about in May, it had gotten so bad that I HAD to take a nap mid mornings, I am not a nap person! Also, my hands as well as shaking seemed off in color, not really gray and dusky, but not pink either. (No new murmur, normal heart rate, no chest pain/sob, not even any stomach upset.) This lasted for maybe 2 weeks, then slowly got better and then I didn't need any naps anymore. then every other symptom slowly decrescendo'd back down to more a normal level, and today I am okay, no 4 different types of tremors, brain not as foggy, etc.

Oh, along with the symptoms I mentioned, I also had eye pain, sometimes sharp like I was being stabbed in the eye, sometimes dull, like you would feel if you pressed on your lids. bouncing back and forth from eye to eye. No loss of vision. Also, not really numbness, but tingling, hands and feet, and this weird feeling like I had a hair on my hands, left index finger the most and sometimes, right thumb. Also, if I were laying down and I put my arms up, to blow a kiss to my girl, my hand would flop back and I almost actually punched myself a few times. Loss of balance and dizziness, But no actual falling, yet. But at it's worse, I had to hold on to the walls or furniture to feel more stable. If I closed my eyes, it would be worse.

I am not stupid, I know there is something wrong, and with all my research it sure sounds like it to me, but I am only a woman and nurse, no one will listen to me, who knows her body better than anyone else.

So, there that is my story so far..sitting here, waiting for something more to happen. I'm not sure if I am imagining it, but I may be starting to cresendo back up again. My eyes haven't hurt me in a while and today, they started again, and it's been a few weeks since I felt those hairlike sensations on my hands, til today, and I seriously almost fell big time in the shower today, it was hard, but I caught myself.

OH! Another thing. I have never had a yeast infection in my LIFE!! Never!! And since this 'episode, flare' whatever it is. I got my first yeast infection in August and it's still here, not going away, multiple rounds of diflucan and creams and douches and it's here. I even cut out most yeast, and added soooo many new homeopathics, food wise and supplement wise, and it's still not completely gone.

So, my big questions would be:

1) Are my symptoms really that atypical? Does anyone elses go in waves, slowly building up to a peak, then back down?

2) The discoloration in my hands at the peak of it. Has anyone else had that?

3) Does anyone else have the yeast infections BEFORE they got treatment for their MS, (that I hear can cause them)?

4) Am I just supposed to sit here and wait now for another flare to get diagnosed?

5)If I don't have another flare or crescendo of a flare by Feb (my next appt time), if they do a re-do MRI and my first Spinal, could they still tell if it is MS? Won't my lesions not be 'bright' anymore if I am not flaring? Or have new ones? Can they still see the demylenation in the Spinal if there is not an active flare?

Okay, I've bothered you all enough. Thanks so much for any help/guidance you can give me! :-)

[22cyclist]

Hi sayccrn and welcome to MS world! I am sorry you are having so many symptoms. I too was an ICU RN, PICU. I know how difficult it can be to stop working because you feel dangerous to your patients. I will try to answer your questions:

1) Are my symptoms really that atypical? Does anyone elses go in waves, slowly building up to a peak, then back down?

Some of your symptoms are atypical for presentation. The tremors everywhere (most MS patients may present with a simple intention tremor or a voice tremor but not usually the others too. Also the eye symptoms are a bit odd. When a person presents with ON, they have pain in one eye, or if ON is in both eyes they have pain in both at the same time, followed by blurriness in eye, or eyes. So your pain is a bit odd and doesn't fit.

Exacerbations go in waves. However they generally start suddenly, with the exception of ON, and end gradually. They may leave behind symptoms that do not go away, or they may not.

2) The discoloration in my hands at the peak of it. Has anyone else had that?

This is also an odd symptoms that does not really fit the MS mold. If it was not a raynaud's phenomenon, then it is extremely uncommon.

3) Does anyone else have the yeast infections BEFORE they got treatment for their MS, (that I hear can cause them)?

This would be totally unrelated and a complete coincidence. Sometimes people get what are called pseudo-exacerbations after an infection, or during an infection that act like exacerbations but there is no damage being done to the CNS. It is just like when heat is experienced by MSers and they have a reaction to it (tingling, numbness, dizziness, etc). This is also a pseudo-exacerbation.

4) Am I just supposed to sit here and wait now for another flare to get diagnosed?

Yes, unfortunately, or wait for your next appointment whichever comes first.

5)If I don't have another flare or crescendo of a flare by Feb (my next appt time), if they do a re-do MRI and my first Spinal, could they still tell if it is MS? Won't my lesions not be 'bright' anymore if I am not flaring? Or have new ones? Can they still see the demylenation in the Spinal if there is not an active flare?

Yes. Not necessarily. New lesions may be bright, or you may have active lesions and not know it. Active lesions do not always produce symptoms. Any changes in the MRI should support a diagnosis if the lesions look like MS in shape and size, and location. Otherwise you may be looking at another disease. Yes they can still see INFLAMMATION on the spinal tap if there is no active flare. They will estimate demyelination by reading your Myelin Basic Protein in the CSF.

My question to you is: What did the IMPRESSION section of your last MRI say?

I am glad you are feeling better. I hope it stays that way.

Take care
Lisa
Moderation Team

[sayccrn]

Thank you!

Well, I haven't been able to even see the report on the MRI, so I don't know exactly what they said. I do have the disc and have done research and to me, it looks consistent with MS: as my lesions are in the same places as everyone elses.

The tremors were also a slow build up, I think that was also over years. Starting with an intention and when it was really bad this year I had all fours types of tremors, but they didn't last, (it was only all four of them for maybe a month) now I am minimal tremors with still an occasional intention, and occasionally feeling like my legs are shaking when I go down the steps.

As for my eyes, as I said in my post, they had stopped hurting until today, and now I am blurry again. Like I need to clean my glasses, but they are fine. My dizziness is more right now too, not sure if it's because my eyes are blurry or if my eyes are blurry cuz I'm dizzy.

I do have raynaud's, but have never had them looking like they did then. It was kind of scary, even my BFF, who is also an ICU nurse saw it on a video I sent her of my tremors. Once I started feeling better, it went away.

So weird. But as I've been reading here today, I have an awful lot of the same symptoms as a lot of the posters do, so something is going on.

Would you say I should get another MRI and a spinal at my next visit, regardless of a current flare? If they can still see or maybe figure out what I don't have. Anything would be better than being the damsel in distress across the tracks as the train is closing in!

Thanks so much.

[22cyclist]

Yes, I would say you should get the MRI and spinal tap at next visit if that is what they are offering. I would also recommend that you go to wherever you had your last MRI done and pick up the paper copy of the radiology report of your MR. It is always good to have a copy of that. What we see on the MRI and what the radiologist sees are often two different things. What you are looking for on the report is to see if the radiologist says that your lesions are "consistent with MS".

Let us know how it goes, OK?

Take care
Lisa
Moderation Team

[sayccrn]

MRI results

hello, I have my interpretation from my mri. which I realize now was solely for my complaint of tremors, and not anything else I was experiencing. So please add this to your interpretation of their interpretation.

Oh, and for knowledge: I am not overweight, or have HTN, as a matter of fact, my bp typically runs on the low side. And now that I've returned to baseline, I have only slight intention tremors left, unless I get too tired or overheated.

Here it is: "Punctate areas of increased T2 and inversion recovery signal noted throughout the deep central and periventricular white matter noted on the left greater than right." (btw: my right side was worse in everything.)

(Now here is a side note, which I do not think means anything, other than I am not formed normally, from birth, but I will put it in here anyway.) "The visualized portions of the orbits, face, upper aerodigestive tract and skull basw show distinct abnormality." (To look at me physically, you can only see my jaw is crooked, and I do have tmj, which gives me no signs since my braces. And I broke my nose pretty bad when I was 16.)

"With respect to patients tremors, there is no distinct abnormality of the pars compacta of the substantia nigra or cerebellum."

"Impression: changes of aging mild microanglopathis gliosis. No findings to correlate to any movement disorder."

With respect to 'normal aging' I am 48 not 68, no artheosclerosis history, not even high bp, plus, I am better now. if it were 'normal' aging, would I have gotten better? And when that first doctor tried to tell me it was 'normal aging, I got him all flustered, cuz he could not answer my questions. Something doesn't add up to me.

Please tell me what you think.

A few new symptoms, I have noticed too. my right Achilles tendon, has been killing me. I have not sprained it am not a runner, my balance is still off a bit from time to time too. Still manage to catch myself but I've had a few very close calls. and last night, I was sooo tired and I was getting what I can only describe as little bursts of fireworks types sensation in my arms and legs. It started before bed then as I was drifting off it was worse, so much so, I even dreamt them as actual fireworks exploding, minutely.

Thanks so much for any advice.

[22cyclist]

Hi sayccrn: I will try to go through your MRI.

"Punctate areas of increased T2 and inversion recovery signal noted throughout the deep central and periventricular white matter noted on the left greater than right." (btw: my right side was worse in everything.)

So, you have very small dot like areas (MS lesions are oval in shape and are larger) of increased T2 and inversion recovery signal in the deep central (an area not usually seen in MS) and the periventricular white matter (an area seen in MS)noted greater on the left than right. In most cases MS is symmetrical for the most part.

"Impression: changes of aging mild microanglopathis gliosis. No findings to correlate to any movement disorder."

Even though he diagnosed microanglopathis gliosis, you still may have that due to hereditary reasons. It doesn't have to be an immediate generational issue. This issue is really no big deal anyway. Incidental finding on MRI.

So even though they were looking for reasons for the movement disorder, they thoroughly looked at your brain and saw no MS lesions. MS lesions are a certain shape and size. They hang out in certain locations, but they must meet the shape and size requirement. They can't be small punctate lesions because these may be just a vessel head on that the MRI picked up.

Your symptoms right now do not add up to MS symptoms. They could be caused be any number of things. Try not to worry about MS for now. Just see what your neuro says, and perhaps he can treat your symptoms.

Take care
Lisa
Moderation Team

[sayccrn]

Thank you!

[hunterd]

So, my big questions would be:

1) Are my symptoms really that atypical? Does anyone elses go in waves, slowly building up to a peak, then back down?

2) The discoloration in my hands at the peak of it. Has anyone else had that?

3) Does anyone else have the yeast infections BEFORE they got treatment for their MS, (that I hear can cause them)?

4) Am I just supposed to sit here and wait now for another flare to get diagnosed?

5)If I don't have another flare or crescendo of a flare by Feb (my next appt time), if they do a re-do MRI and my first Spinal, could they still tell if it is MS? Won't my lesions not be 'bright' anymore if I am not flaring? Or have new ones? Can they still see the demylenation in the Spinal if there is not an active flare?


Your symptoms are not a typical, but they are typical to more than MS alone.
What color are your hands? It could be raynauds disease.
I did not have any infections before or after my diagnosis.
I can tell you that AMS diagnosis does not come quickly.
A spinal tap can tell you whether or not you you show the indications of having MS whether or not you are in the midst of a flare.

I probably just repeated what Lisa told you, but I did not read through all the replies.