Limbo land is a weird place to be...

[M E L]

Hello everyone,
So I've been in limbo land for 7 years.

My first episode landed me in the hospital with a gait disturbance. At the time, they only did a CT scan and an EEG to make sure it wasn't some sort of seizure activity. They decided it might be a sinus infection so I was sent home with antibiotics (even though I had zero symptoms of an infection...)

My second episode began the same way with the gait disturbance. About a day after that began, I started getting that dreaded brain fog feeling. I was able to see 2 neurologists while having symptoms. The first one decided it was "psychogenic" in nature and didn't order an MRI since my symptoms weren't typical of someone with MS (I don't know what his problem was...but he was a terrible neuro). The second one ordered the MRI and they found evidence of a lesion...but only 1. My EVP's came back normal and so did my spinal tap and when we repeated the MRI 6 months later, the lesion was no longer detectable. All my symptoms subsided in November 2012.

So, here I am experiencing my third episode. I have since relocated so I have to reestablish with a new neurologist, but I was able to see an internist. We did all the push/pull tests and there was a pretty noticeable amount of weakness in my right leg. I've also been experiencing arm heaviness and that brain fog. The gait thing came back too, but only for a week this time. (Currently on day 15 of new episode). Lots of right leg tingles and numbness this time around. MRI scheduled for Jan 3rd.

At this point, whether it turns out to be MS or not, I just want answers.

Here are the symptoms I've experienced in the last 7 years

Gait issue - basically, I can't walk straight. I drift to the right every time. If I start in a hallway against the left wall, I will end up on the right wall in a matter of steps. Anyone else experience this?

Brain fog - pretty self explanatory. I just feel like my head is in a cloud and is processing everything very slowly.

Limb weakness

Leg numbness - especially right upper thigh which is having mini muscle spasms right now, and shin numbness

Dark spot in eye - this only happened once... I woke up and it was like someone pulled a shade over this eye. I could still see, but everything was very dark. It was scary and I hope I never get that again.

Well, that's all as far as the possible MS junk goes. We'll have to see what the scans say.

[Seasha]

Hi MEL and welcome to MSWorld, a safe place for understanding and gaining lots of information, even though we are faced with unknowns. We also have a chat time for those in limbo called "Patiently-Waiting" It's on Wednesdays at 8pm (ET), so you might want to check this out!

I can certainly understand how you want answers as many of us have - I was in limbo for 10 years and know how frustrating it can be! UGH

I wish you luck with your MRI and hope you can find a neuro, preferably one who specializes in MS! Don't forget to bring an outline of your symptom history and make a list of specific questions.

Let us know how it goes.
Take care!

[Jennagain]

Yes limbo land is a really weird place to be, especially after such a long time. I have been here 8 years and have had various answers, but none of them ever stick.

I have had two "attacks" of a neuro nature, both of which included weakness and spasticity of my left leg. First one was bad and also included tremors, major bladder problems and balance issues. Resolved 95% after several months.

Fast forward eight years and I had another attack in Sept which included same feeling in left leg, weakness and clumsiness in arms and hands, balance issues, pins and needles in leg and head and cognitive problems. I have made a great improvement again, but not completely resolved.

It truly is bizarre to have transient symptoms which affect your function, but no name for it. People asked me why I was having trouble walking and I couldn't tell them!

I used to think I definatley had MS, but now not so sure. Just hang around here because it seems to be the only thing that fits. Previous doctors have given me a variety of hypotheses which have included: thyroid disorder, possible MS, Probable MS, spinal cerebellar degeneration, stress, myasthenia gravis and even "your symptoms are normal".

It has been very frustrating because even the doctor's disagree and contradict one another. One said there were two lesions, one said there were no lesions and then one said there were four or five. One said it was definitely not MS and one said it very likely was, only to turn around and say no it wasn't! They have even disagreed on results of neuro exam. One said it was "not too bad" and one said it was not good and very indicative of MS. Talk about adding to your stress!!

Have made peace with the fact I may live in this limbo land forever. Wont mind too much as long as attacks only come about every 8 years. Now if they are much more frequent and I start to accumulate disability I wont be too happy, but I figure if I am truly disabled they will be forced to give me a label and my limbo land days will be over!

[wizardsmom6]

I am a right leaner also

Hi, I was diagnosed in September. After my first MS flare up in October, I started leaning to the right and walking to the right. It's weird because I don't feel like I am leaning but people tell me I do and I can see in the mirror that I do. The physical therapist told me to lean to the left but when I do I feel really off balance even though I am straight. I definitly walk towards the right which leads to balance issues. Oh, the weird neurological symptoms there are. Good luck!