[jammyh]

Hi. New to this forum stuff so hope you can keep me straight. Just want some ideas if poss as to what I could be dealing with. 8 mths ago I started feeling off balance - shifting to the left. Had ears checked - all clear. Then my left leg suddenly became flacid and would not support me. Rest recovered strength but I cannot sustain it. Over time, other leg has since gone as well and I can am now totally housebound. I have an ataxic (I think) gait and need to hold onto walls for support round the home. I cannot walk outside without aids, and then only very short distances before both legs stop working. It is exhausting. I have problems with my left eye now as well as dry eyes and get repeated eye infections. Nero did mri of brain and c spine (no contrast as she said they are pointless)- clear. I had a nerve conduction study and emg 7 mths ago - done by a student on my right leg which did not cause problems at that time. I was told it made no difference where the study was done. He did my right ankle and right shoulder only.. Neuro physio suspended treatments until she has a diagnosis to work with as 6 months on I had deteriorated rather than improved. I am told I show a positive babinski reflex and pronator drift (whatever they are). The Neuro says it is not neurological because my mri was clear and just keeps telling me it is my body reacting to having had cancer 15 yrs ago. My doc is not happy and referred me to another neuro out of my area, but the waiting list is months. Does anyone have any ideas as to what is going on and/or what I can do to get back on my feet - literally. I just want to get back to work, or even out of the house would be good.

Might be worth mentioning, I have no pain thank goodness, but I do get very breathless.
hank you for any advice or suggestions.

[Lara]

Hi jammyh,
Welcome to the NeuroTalk Support Groups.

It sounds as if a second opinion is in order. It's a pity you will have to wait so long to see the 2nd Neurologist.

The proximal weakness and breathlessness could be caused by many things.
Same with positive Babinski and pronator drift.

There is a
Neuromuscular Forum

You could also try doing a full forum search for specific words or groups of words...
e.g. Positive Babinski or Proximal Weakness.

Forum Search Feature

You'll find they'll come up on a number of different forums.
You can search both Threads and Posts.

If you need any help navigating the forums, please just post again and someone will be sure to help you.

All the best to you with your health and in getting correctly diagnosed.

[Darlene]

jammyh,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[jammyh]

So, its 3 o'clock in the morning and I am sitting outside trying to cool my very hot and bothered feet down - and here in the UK its not exactly warm so the rest of me is pretty darned cold.

Nothing better to do than to sit and wonder what on earth is going on with my legs - they used to work so well for me. I have always suffered in the summer with rls, but since I lost the ability to walk, the rls and pins and needles is 100times worse and it is no longer a warm weather only problem.

Sorry guys, I just needed to rant. I just cannot see how the loss of use of my legs, my balance being completely off (I am now sporting a black eye from misjudging where I was in relation to the door frame), the exacerbation of the rls and chronic dry eyes is somehow my body reacting to having won a battle with cancer 15 yrs ago. What a cop out from a neuro who did not even bother to do a full initial workup.

Is an emg absolutely definitive, i.e. if clear right at the initial onset of early symptoms mean there is not anything neurological going on? I don't understand these tests and still don't know why it was carried out on my right ankle and shoulder when all my problems are with the left side. The neuro is absolutely adamant everything can be ruled out based on this test alone.

Am I really going mad? Is this all in my head? I have always been so busy, so happy and so full of life then wham - no working legs and steadily increasingly weak upper arms. Oh what joy.

Sorry - rant over. Hope you all have a good day (or night depending on where in the world you are).

[Lara]

Hi jammyh,
I'm sorry you've had such a bad night and I'm sorry you're feeling so down about all the physical changes that are happening to you right now without any definitive answers.

Rant all you want, it's OK.

I can't answer some of your questions but I still think that getting a 2nd opinion is sometimes a good idea.

take care of yourself.

P.S. Maybe reposting your message on
General Health Conditions & Rare Disorders Forum
as well as Neuromuscular, might get more viewers.

You could also ask the members on the
Multiple Sclerosis Forum
about the Positive Babinski and pronator drift.
Positive Babinski reflex can occur in numerous disorders, but the members on the
MS Forum may be able to explain it to you better than I can.

Another thought... have you ever had your Vitamin B12 levels checked?

[jenng]

Hi Jammyh,

Very sorry to hear of your troubles. I can offer my opinion...

Absolutely I would seek a 2nd opinion from a different neurologist. The EMG should be checked on the affected side.

From the dry eyes, ataxia, and pins and needles sensation, I would think a rheumatologist should take a look at you and get some bloodwork. Have you ever heard about Sjogren's syndrome? Take a look at it and see if your symptoms fit.

Good luck in your journey, & please be careful!

[jammyh]

Hi again. Thanks for your suggestions. I have no idea how to repost so will start new thread in ms forum as you suggested.

I looked up Sjogren's syndrome but apart from the dry eyes, nothing else really fits. I have no pain and no apparent inflammation. Not sure whether I have dry mouth or not as I always have a cup of tea or coffee with me.

As for B12 - I see my an endo every 6 months so know my thyroid, adrenals etc are all balanced well with replacement meds. Once a year he also does a full range of blood tests including iron and other vitimins etc. Extra were done this time also because the other thing I did not mention was that I have lost a lot of weight unintentionally and am now very underweight for my height (5'5" and 7st1lb). I have no idea why because I am a real chocolate addict!

I have been waiting for 6 months for an orthotics appointment to have knee braces made.This is because when I try walk, I cannot control my knees and they snap backwards to extreme hyper-extension with every dragged step. However, today was the day of my appointment and, having been waiting so long I completely forgot. I rang straight away but was told I will go back to the bottom of the list for a new appointment. I am so silly...

[Kitt]

Sorry to hear of your problems. Keep us informed as to how you come out with knee braces and what kind. Curious as to why your knees hyperextend. Thanks much!