Limboland

[Sidesteps]

I think this is more or less a blog. I'm not sure I'm ready to put my feelings out there yet for the world to see.

I woke late last night with my right hand moving. It was a large enough tremor that it woke me. It freaked me out and I instantly worried "What if this isn't MS?" "What is wrong with me?!!" I dozed back to sleep with a lot of self talk and then later woke again with a numb left big toe and strange feeling in my right foot. I was half awake so I
vaguely recall feelings of pins and needles in my right foot. Much of my old symptoms are still here... they are just less prevalent. I think the only symptoms that have resolved completely is the visual haze and eye pain.

My MS specialist was at a conference last week when I called to get my VEP results. I still have not heard. My initial appt. he sort of left me with "well, your MRI is clean so that is a very good sign. If you had optic neuritis then it means you have a 30 to 50% chance of never having another attack for 15 years. We will put you on a schedule to have MRI's every 6 months for a year then annually for sometime." He did not discuss with me if I should start feeling sick again or how to address current symptoms. (I did not think to really ask about current symptoms because I felt better then.)

Since, I feel I am in a milder relapse and am struggling with pretty significant issues when my hormones are flared. I had switched general practioner's last Summer due to insurance changes, I haven't been impressed with her at all so I am avoiding going back into seeing her but I am worried today and I'm not sure what the next step will be for me. I asked her a month or more ago about testing my thyroid. She nixed it. I went back in after noticing the double vision and the doctor on call did the thyroid for me. I feel lost.

I don't want to get so hung up on MS that I could be missing something important. What IF this something else?!! Anyone else go through these feelings. I'm scared. I think I am going to make an appointment with my former doctor (now that my insurance will pay for him.) I am going to get copies of ALL my tests and make an extended appt. to have him review it all. I hate this. I'd almost rather have a diagnosis so I know what I'm fighting then feel this way. The "what ifs" are troubling....course, I could hear today that my ON is positive and this MS specialist might actually seem to take me seriously. At the moment, I'm not feeling like anyone is listening.

Has anyone else woken up with hand tremors?

P.S. I have had an EEG, EMG, VEP and a ton of blood work done (Lyme, Vitamin levels, Thyroid, Lupus, Arthritis, Sarcoid.) I'm hoping they covered their bases. I'm not sure whats left besides the SEP and OCT or what else they can do for me.

[Sidesteps]

BTW: I wasn't clear --- at my worst, this last fall, I didn't feel good for nearly a month started feeling better 6 weeks.

I just had another relapse for two weeks.

[Sidesteps]

Hi Rendean, we have not "met."  :) Nice to meet you.

Thank you. I did look at the health pages and I've done a TON of research and I'm hoping that the doctor's did their due diligence with regard to my EMG and EEG to rule out other serious ones (at least that is what my Neuro reassured me of.)

I don't have customary muscle weakness or atrophy in my extremities and anything related to my weakness has been "clumsy"  or generalized fatigue when I was having an attacks. Like dropping things or mistyping - stuff like that.

I had so many symtpoms it seriously was like a full system meltdown but the symptoms started nearly a year ago... they just got worse.

Just before I got worse, I had a vaccine and ran a very slight temperature.  I went on vacation and all hell broke loose within my body; stabbing pains in my abdomen, chest and extremities. At one point on vacation, I thought I might be having a heart attack because the pain was near my heart but I exeperienced this throughout my abdominal area and knew it couldn't be the case.

I had a spot on the right side of my abdomen that felt like someone was squeasing it. (It is now gone.) I checked it ALL the time though, it just felt tight. I had difficult balancing on the trip but didn't think much of it. I started to become fatigued and took naps more than I normally would.

THEN, we came home and I started feeling worse - couldn't maintain body temperature, cold spots *right side of my body*, burning spot *left shoulder*, tremor in my left hand, twitches, myoclonus went WAAAY up, haziness, eye pain, overall fatigue, had to rest after taking a shower twitched terribly when I did, had a hard time seeing the computer screen, couldn't finish my sentences, vision issues, incontinence, didn't pass the Rhomberg's test, the finger to nose test, my right leg felt like it was heavy and slow, things just felt off and strangely my blood pressure went up.

I didn't feel good for about two weeks. No matter what, I seem to have a set back, it seems, near my hormonal time. lol I did feel "sick" for about two weeks again just recently that was unrelated. The lingering symptoms are visual disturbances - left eye; twitching, scotoma, double vision and dimming in the visual field. Right eye; periodic eye pain, looks fatigued, heavy. I have systematic twitching mostly focused on the left side but ocurrs on both sides too. Left side tremor's. Left leg, right arm myoclonus and abnominal myoclonus - sometimes in right hand. Fatigue. Aching deep inside left bicep, right fore-arm and leg. Numb, pins and needles falling asleep at night. Vibration feelings in scalp or throughout my body. Cold spots on arm, typically right side but one spot on left arm.

I thought at some point I had MG or a form of Bells Palsy. At my worst, by the end of the day my eyes were so fatigued and hurt so badly I could not watch TV or look at a computer. I just went to bed to rest my eyes. That was when I had a lot of the ON symptoms --- haziness, pain on movement (I still have that at times but it's my right eye not my left.) My left eye is the one with the double vision, muted vision but what has thrown me off more than anything is that I noticed and can feel a heaviness near my right eye. It felt numb too. It looks droopy or tired. Actually, when I don't feel well I look "sick."

I'm going to write all this down...thanks for "listening" to me.

I found my journal too. One thing I've noticed is that it seems like some of my muscles or ligaments in my left arm are 'catching" or tight or maybe it's negative myoclonus? The muscle seems to move when stressed. I am wondering if that is spasticity or maybe muscle weakness.

LOL - yes, all my tests are negative for anything?!?! My general Neuro even insinuated that even my muscle twitches didn't show up on my EEG or EMG.  I think they think they have pretty well tested me for ALS, Parkinsons, Seizures, Migranes, Tumors, Stokes, Muscle Diseases, Lupus, Lyme, Sarcoid, Thyroid disorders, Vitamin Deficiencies, etc.

And,  I clearly need to journal. I'm teasing myself with writing this "book." ;) I better stop now. Have a great day!

[rendean]

BTW, we have Health Pages on a variety of subjects that contain a wealth of information. They are located next to yellow icon in the upper right hand corner of the page. The specific link for MS mimics is :

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Mimics---Part-I/show/375?cid=36

Please keep us updated.

Ren

[rendean]

Hi Sidesteps I don't believe we've met before,so welcome to our forum.

I had a negative VEP,SSEP, two or three non-enhancing lesions, that were"too round to be MS" as well as not being in the perfect spot for MacDonald Criteria. I had all the blood work as well , all negative except for Vit B.

They thought for years that I had Sjogren's syndrome, another autoimmune disease in the lupus family that is a great mimic for MS.  After 5 years and 5 docs a lip biopsy for Sjogrens was negative leaving only MS left as a possible answer.

You are wise to remember that other things may mimic MS. I like your idea of compiling a folder a getting a new set of eyes to look at it.

Ren

[Sidesteps]

Thank you, I think my path will be to pull all my tests, compile a folder and schedule and appt. with my original physicians office and see what direction he would like to go in. Get a totally different set of eyes to take a look at me. I think that would be good for me as well.

I also am going to make an eye appt. In the very least, we need to figure out what's wrong with my vision! The double vision is unmistakable --- Bob explained it pretty well, I have a 1/2 to 1/3 vertical ghost image that is easily seen on light typing, dark background or LED lights --- I think it's giving me headaches and causing some weird strain on my other eye.

When I started this journey before I got REALLY sick --- I thought my symptoms were related to taking Cipro. All my symptoms were more peripheal in nature then I had the "full system meltdown" and it took a completely different path. The doctor ruled out Cipro being the cause.

We have had some other things within my family. My Mom was supsected to have lupus or lymphoma last year after some blood tests came back abnormal. It turned out she is ANA positive and matches 9 of the 11 criteria but the doctor ruled out Lupus leaving her in the "it's an auto-immune disease but it's hard to say where you will fall. Wait and see" category.

We had very very similiar symptoms and still do except I am not ANA positive. A new view will be good... so might a new attitude... you know, I like to be mysterious but this might be extreme. :)

[sllowe]

Sidesteps,

I'm glad you layed all of this out - it helps us too, and know it feels good to get it off your chest.

Your thoughts are good I feel in regards to all that's been ruled out where MS would be considered, then there absolutely maybe a differential dx in your future. The doc holds the key to your future steps. Heck, the right doc may not even be this neuro. May be a whole nother specialist altogether.

I hope your what if thoughts don't keep you up at night and we can help you hang in there as these things get chalked off your list.

-shell

[kateska]

Hi Sidesteps,
I just want to say that my heart goes out to you.  This limboland thing is awful, especially when you feel like you're doing EVERYTHING you can to find answers and you just can't come up with them.  Keep with it.  An answer will eventually come.  

[HVAC]

As a Doctor told me when I was going through it, something is going on with you and it is real, whether it is MS or not something is real.

Alex

[Sidesteps]

Hmm, well, I found out today that my VEP was normal.

I'm not sure what to think now.

[HVAC]

I hear your frustration. Peace of mind is good. It just sometimes is slow in limbo. I know it is hard.  I saw my first Neurologist in 1965, then in 1968, then in 1978. Then in 2007 my PCP sent me to a Neurologist which led two two years of Neurologists and tests.

Alex

[Sidesteps]

I think it's more peace of mind -

[HVAC]

Every six months is standard for Neurologists following you. My first MRI showed clear signs of MS at least 4 Neurologist thought so. My VEP and BAER were abnormal. I had MRIs every six months for two years which indicated MS. My blood work showed nothing else. All my neurological exams were way off. Finally I had a LP which was way abnormal so I got a diagnosis. There are many neurological disorders, some benign, and many diseases which mimic MS. Some people get a quick diagnosis most people it take time. Neurologists only work quickly in things like brain injury and stroke. Other things if they are not sure they watch over time.

There really is no hurry for a diagnosis. In fact little is different for me two years after diagnosis. I thought it would be less frustrating if I knew what to call this but really for me its the same. I still only see my MS Specialist every six months even if I have a new symptom.

Alex

[COBOB]

If you have paresthesias in extremities, an SSEP may be useful.  If you had a clean MRI with no evidence of atrophy, an OCT might not be worth the cost.  The theory behind OCT is it should indicate atrophy before they can see loss of brain volume or black holes on the MRI.  It really doesn't add much to the diagnostic dataset.

I guess we get back to the basics.  If everything else has been ruled out, and you have two attacks in different neurologic domains separated by more than 30 days and lasting more than 24 hours, then the doctor should be considering MS as a potential diagnosis. There are a lot of "IFs" that need to be met to get to a "THEN MULTIPLE SCLEROSIS."

Bob