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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


I have posted this also in the MS forum as the symptoms I am feeling are so similar. I looking for some advice please...

Ok here goes...

I have had various health issues over the past 18 months, light headedness, gastro intestinal problems, throat issues.

I had an MRI done 2 years ago due to light headedness – Result was all clear.

I then felt light headed again 15 months later and then 6 months ago I had a Brain CT scan followed by a Brain MRI all again turned out clear. I had read about MS and asked my Neurologist if I have MS and he said in 95% of MRI’s MS shows if your symptomatic and I was possibly showing some symptoms. After the MRI he was happy it was not MS. I also had a huge range of blood tests CBC,s Immunity tests etc. all of which were clear. He ordered a MRI of my Cervical spine and that showed a bulging disc at C4/5 the report says:

[B][I]Bony alignment and marrow signal are normal C4/5 and C5/6 disc spaces are narrowed.
Broad based disc protrusion is seen alog posterior ad left posterolateral margin of C4/5 disc. Left C4/5 neural foramen appears severely narrowed. Suggest correlation with symptoms and clinical findings. Central canal only shows mild narrowing. right C4/5 neural foramen is midly narrowed.
Medial end of right C56 neural foramen is mildly narrowed. Small annular tear seen at posterior margin C5/6 disc.
Small central disc protrusion noted at C6/7 disc[/I][/B]

The concerning thing was the small finger is not affected by C4/5 issues

A month later I kept waking in the night with the left side of my hand feeling totally numb. As the weeks progressed this got worse, then went away for a few weeks then returned again with intensity. The feeling then started creeping up my arms and then across to my right hand and arm. I started getting tingling and prickly feelings in my fingers and arms. When I would go to bed I also started to get tingling in my feet. I also started to get a feeling of a lump in my throat but no lump was seen or detected by an ENT Dr. he put it down to a phenomenon called “Neuralgia”

I had yet another disruption of the bowlels with pain and constipation and so I went back to an Ortho Dr and Neurologist. Because this numbness seemed episodal my Neuro got concerned and said this was all pointing to MS and so ordered more tests again which were:

1) Brainstem evoked Potential
2) Visual evoked potential
3) Somatosensory evoked potential
5) Brain MRI with and without Contrast
6) Cervical Spinal Cord MRI with and without Contrast
7) NCT
8) EMG

Again they all came back normal but the NCT and EMG showed some nerve entrapment and the Neuros report on the NCT/EMG said the following:

Prolonged distal motor latencies of left median and left ulnar nerves may suggest proximal root lesions. Mixed nerve study shows that the latency of median nerve is prolonged compared to that of ulnar nerve. This suggests slowing of conduction over the wrist. Therefore, it provides electrophysiological evidence of left sided carpal tunnel syndrome.

He says the chances of Carpal are about 50% but I dont think it is as I have my arms and legs affected!

The Neurologist again had a meeting with the Senior Radiologist and they both came back and said this is NOT MS as if I was this symptomatic with MS it would be very distinctive on the MRI images and that my Brain and Cervical Spine MRI showed ZERO evidence of any MS, additionally the fact that the Brain Stem tests are normal corroborates the diagnosis – I was told the brain Stem tests are pretty conclusive.

1 week on and my right leg is weakening – it feels like I have exercised my calf muscle and has that weak feeling that you get after you have worked it in the gym. All my muscles feel twitchy and sometimes certain muscles are slightly trembly. Sometimes if I sit on the sofa my right leg feels like it is going to sleep. I am terrified as to what the hell is going on with my body. I am suffering severe feelings of nausea.

I wonder if anyone could give me any thoughts about this please – I am in quite a state as I fear this is MS or ALS

Cheers

Axa
I don't know what to say but I wanted you to know that you are not alone, I have very similar symptoms as you and I don't know what it is, all my tests have come back clear, my last MRI showed lesions but they chalked it up to migraines. I have been told by two nuero's they think I could have MS but when I went to the specialist he said he didn't think so since I had a brain tumor(since removed). It's been five years and things are proggresivley getting worse, my hands and arms just started giving out on me, my legs have been in pain for quite a while and I am losing feeling in them more and more as time goes by, I can't feel one leg on another anymore and you know how when you don't shave your legs for a while you can feel the stubble on the other leg and it's scratchy I no longer feel that. I can tell that they are cold but when I put one foot on the other can't feel the coldness. They go numb all the time, there is twitching even in my eyes. I wish you the best on figuring this out. I just wanted you to know I know how frustrating and scary this can be. I don't understand why for some of us it takes so long to get the diagnosis that we need to move on with our lives. My friends have accused me of wanting to have some horrible disease. I don't want that, I want none of this, I want to be better! If not then I want some answers for why my body is failing me. I need that knowledge. I have two kids. I will not give up my quest and niether should you. Good luck. I will say a prayer for you to find the answers you need.





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