Hi all, my name is Andy and I am new to this forum - Nice to meet you all.
I am currently worrying myself silly over
ALS and wonder if someone could give me some advice.
This will be a LONG thread so I apologise but want to let it all out
Here goes...
I have had various health issues over the past 18 months, light headedness, gastro intestinal problems, throat issues, you name I have had it
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 (March 2009) and so I had a Brain CT scan followed by a another 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 particularly if your male and I was possibly showing some symptoms. but after the MRI he was happy it was not MS. I also had a huge range of blood tests CBC,s Immunity, Urine Anti-Nuclear antibodies like Lupus Auto Immune tests all of which were clear.
Around the same time I started waking up in the night with the side of my left hand feeling numb/tingly. My little pinky finger and the one next to it I could not move at all like a temporary paralysis. However once I stared at my hand within 5 seconds or so the fingers could move and the feeling returned to normal. As the weeks progressed this got worse, then went away for a few weeks then returned again with intensity. My arms then started to feel a bit tingly with weird sensations. 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 was referred to an Ortho Doctor and he ordered an MRI of my Cervical spine and that showed a bulging disc at C4/5 the report says:
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
He told me the reason why the hand does this when I sleep only and then corrects itself when I look at it awake is because when I sleep my muscles totally relax and the nerve is impinged in a position and then when I wake my muscles act as a splint and thus the normal feeling returns. The concerning thing was the small finger is not affected by C4/5 issues its affected by C8. he also ordered an EMT/NCT and the findings were.
Dated March 2009
Nerve Conduction Study showed.
1. Normal conduction velocities over both median/ulnar sensory nerves to D4 and both median/radial sensory nerves to D1. SNAPS were adequate.
2. Normal conduction velocities over both median and left ulnar motor nerves with normal distal latencies. CMAPS were adequate.
3. Normal H-reflexes bilaterally, with pick up over FCR
Needles Examination showed increased insertional activity with abnormal spontaneous potentials over the left C5 paraspinalis. recruitment patterns were polyphasic over the left biceps. The rest of the muscles tested were within normal limits.
Impression
There are elctrophysiologic evidence of chronic left C5 radiculopathy, in acute exacerbation.
He said in laymen terms I have a trapped nerve over the C5 area and the MRI of the Cervical Spine corroborates it all.
In Aug I had a disruption of the bowlels with pain and constipation and so I went to a Gastro Doctor. He did a stomach/throat Endoscopy and a Colonoscopy and all were clear. I told him my health concerns and so he ordered a HUGE amount of blood tests like IgA, IgG, IgM, IgE, CBC, Liver Function Tests, Creatine, C Reactive Protein, detailed Urine analysis and all were normal.
My hand issue started to become episodal and mentioned this to my neuro with the additional tingly feelings in hands and feet 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
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:
Findings 18 Sept 2009
Sensory Study shows prolonged distal latencies of bilateral median nerves. Motor study shows prolonged distal motor latencies of left median and left ulnar nerves. Mixed palm-to-wrist peak latencies shows prolonged latency of median nerve
Conclusions
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 said dont think it is as I have my arms and legs affected!
I was aware of
ALS and I asked him is there a chance I have
ALS as the result this time is different from March 2009? He said NO as
ALS shows itself on EMG/NCT's in different ways with different readings and
ALS was not even on his mind at all.
he then said regarding the MRI's he had a meeting with the Senior Radiologist and they both agree 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 Demyelination, additionally the fact that the Brain Stem tests are normal corroborates the diagnosis – I was told the brain Stem tests are pretty reliable.
I started to worry as I know
ALS can mimic MS and that it will normally NOT show on an MRI because during this period my right leg started to feel weak. Not so much weak but like sensitive nerve feelings. It was mainly in my calf but I also noticed my little toe constantly twitching. I also started to get a lot of twitching in my calf and then my knee started to feel sensitive too like a nerve impingement feeling. My Neuro said on a past MRI of my Lumber I have some mild disc herniation and this could be the cause and not to worry about
ALS as
ALS twitches are different and come much later on and look like waves under the muscle as opposed to just a twitch.
4 days ago I was sitting on a chair with my leg resting on the rest and it felt painful - Not as in "ouch" pain but as in a real nerve sensitive pain it went from the bottom of my calf and went to the bottom of my foot - it felt so sensitive I had to lift my calf off. I got worried this was weakness instead of sensitivity so I keep jumping off chairs etc to see if my leg is weak but its not.
I panicked and went to see ANOTHER Neuro - I told him everything and I filmed an awesome twitch that I got in my right calf when I half tensed the muscle,. I told him about my leg and my hand etc and how I am getting so many twitches. When he saw the film he said it was nothing to worry about and he did some tests on me that were basic like reflexes, touching my nose and then his finger, gripping his hands and getting me to lift my legs while he pushed down on my knees. He told me all this was normal and
ALS would show itself in some ways through reflexes etc and to go home and stop worrying as I do not have
ALS.
Now I feel my right leg is weakening but I still pass the stairs and chair test - I even measure my muscle every day. My calf feels like I have exercised it 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. I felt the other day like all my muscles everywhere were vibrating! Now my right Bicep has started to feel the same way as my calf like its been exercised and I had such a twitch in it earlier for about 5 seconds I had to move my arm to stop it! My left eyelid has also started to twitch a lot
I have also started to yawn a LOT not because I am tired but I just cant stop the yawn. When I yawn I get a feeling of nausea with it that lasts for a few seconds then dissipates?? I read excess yawning can be a central nervous disorder - so thought Oh my GOD this is
ALS. I am so scared and Its making me cry. I have 2 beautiful young daughters and I want to see them grow up - I am only 40 and I am so distraught not knowing if I have this or not - All I know is that something is seriously wrong with me
Could someone help me out with some advice as this is the place to ask.
Now as I type this my right little toe is constantly twitching as well as my calf :9
Sorry for this to be so long but Bless you all for reading my story
Andy
x
Please please help me do i have als? 
