ALS or MS?

[Angela1118]

I am new on here. I am awaiting an answer from the Doctors to exactly what I have. They have been doing tests and blood work since February, 2012. In the beginning, my Neurologist was almost certain it was MS. I have had the brain CT, MRI and a multitude of blood tests that were all negative. I received Solu-medrol-sp?, in the hospital through an IV, and it made me feel great for 4 days. I recently finished Prednisone, tab form at home and it did nothing, but maybe help the pain in my back and swelling a bit,(when I was on the highest dose), but it really didn't help.  I have recently had a spinal CT, which showed much damage, they thought it was degenerative damage from severe arthritis in all three regions, narrowing in my column and a bulging disk, in the thoracic region. My symptoms seem to be progressing since Feb, without stopping. I was choking during the night maybe once a week and now it's three times during the night, that I awaken gasping and I'm fighting to take a breath. I also am choking more during the day, when swallowing. I have also noticed my throat feels like it gets stuck, when I swallow and it's painful. My speech is changing as well. I have muscles in my feet that no longer work as well. I can no longer curl my toes or bend them on my right foot. The feeling I had in my right foot before it stopped working is now in both of my calf muscles for a week now. I't hard to walk and it's very painful. I am on Neurontin, but it doesn't seem to stop all the spasms and twitching everywhere. My question is I have a lot of edema in my legs, feet and hands, why? I believe this is ALS, but I they haven't said so yet. Sorry for the length, thank you.    

[Gio77Italy]

Epilepsy? no I don't think it has anything to do with your problem...

you should have kept a copy of your blood works. did they do CBC on you when they found your Oxygen level was low? You might have developed anemia even temporarily which could give you the chest/respiration symptoms.

There's also something similar in MS it's called "MS hug" but I'm not sure about its symptoms don't think it's your case.

For me it started in September with headache and water leaking from the nose. paralysis of half of the face for some days, then partial paralysis in ascending progression legs-arms-slow heartbeat. eventually regressed but still not completely. It is very similar to the Guillain-Barré but hasn't been confirmed by a Doc. yet. Don't think there's any way to verify that with lab tests.

Well now I don't want to rush to conclusions but the fact that you've been vaccined last year is quite a coincidence. do you know what you were vaccined for? seasonal flu only?

I had a quick look on the use of Steroids in auto-immune syndromes like G-B and I found controversial info, one says that it made it worse another study says that it was a lot better.

http://www.ncbi.nlm.nih.gov/pubmed/8210234

A few days ago I thought to look up on Youtube "flu+neurological" and I learned a few more things...

there's some who blame vaccine to trigger G-B syndrome and find the mercury inside the vaccine to be the explanation but that's ridiculous it is known since the 70s that during pandemics there is higher incidence of G-B it is the virus itself not (only) the vaccine ...

Any ways there isn't really much on the internet about adverse reactions to the H1N1 vaccine, I've found a Canadian page from the 2009 vaccine it lists some of the possible side-effects:

Uncommon (may occur with up to 1 in 100 doses):
• Dizziness
• Generally feeling unwell
• Unusual weakness
• Vomiting, stomach pain, uncomfortable feeling in the stomach or belching after eating
• Inability to sleep
• Tingling or numbness of the hands or feet
• Shortness of breath
• Pain in the chest
• Itching, rash
• Pain in the back or neck, stiffness in the muscles, muscle spasms, pain in extremity such as leg or hand

Any ways don't rush to conclusions and if you suspect it might have been the vaccine only talk about it with people you can trust!

[Angela1118]

I was told that everything as far as my blood work has been normal. they did a total blood work up??? When I think back to 2011 maybe Aug? I had vaccinations in order to; enter into the Nursing program at my college, and I wonder if that wasn't some type of trigger for whatever is going on. Each time I had went to either the ER or the hospital after an attack, my Oxygen level was low. That's why I believe my dizziness, thinking and memory have been affected by low O2. My tongue is heavy and speech is very slow as well. The last time, I went, I began feeling whatever this is, starting, (on top of the normal symptoms that don't go away) it begins with extreme fatigue, more than the normal, then twitching in my right eye and lid then my mouth and nose go numb. Next I begin to feel like my chest is weak and weakness in my back. Then I feel like you would if you were trying to breathe with someone squeezing you or someone sitting on your chest. Next my hands begin to tingle and then muscle twitches everywhere, stronger than, the normal muscle twitches. Some of them get hard and hold like that for a few seconds, my left thigh mostly. These last anywhere from 5min to an hr. I have not had one of these for 3 weeks now. I began having these attacks in Feb on top of the progressing symptoms, (choking on mucus or saliva during my sleep, (I have started sleeping more upright and this has helped) choking when I drink and eat, fatigue. Muscle weakness, muscle spasms and muscle twitches everywhere. The most painful is my back and neck now, next are my calf muscles. I asked if it could be seizures but I keep control and never lose consciousness. I have wondered about epilepsy. The IV steroids did the best, in making me feel normal, they were an immune suppressor. What type of symptoms did you have? I keep getting excited when I feel kinda good after waking up, thinking today is the day it will go away and it never does. It freaks me out to rub the front of my lower leg and top of my feet. It sends like a tingling shock, (like hitting your funny bone) into my toes and sometimes I can make them move that way. My spine feels like, someone is putting an epidural in my back, this is constant. Very weird. Thank you

[Gio77Italy]

You're welcome!

Adderall is some pretty nasty stuff I reckon it's not on sale here in Europe in most countries.

Incontinence appears not to be one of its side effects so it must have been something indirectly linked with it or something you haven't noticed.

When you say low O2 is giving you dizziness you refer to the nocturnal "choking" and dyspnea? dyspnea when lying horizontally is called Orthopnea. I just ran into this maybe it can help you

http://www.ncbi.nlm.nih.gov/books/NBK213/

If you think you have low oxygenation of the brain during the day in absence of respiration symptoms that would be pretty strange. to remove all doubt you could buy a Pulse Oximeter keep it with you all the time, that can tell if the problem is from respiration. otherwise it could be vascular like neck artery or neurological.

Spinal tap and spinal MRI could reveal something but probably not EMG.

My problems also started a few months ago, not that I was doing great before, just like you, but this was totally different. I believe it started sometime between September and December but I fully realized only in January-February.

It is known statistically that auto-immune syndromes are sometimes triggered by infections. All these people who popped up on the forum recently with similar symptoms all started for them between 2011-2012, sometimes 2009. it might not be a coincidence.

Speaking of that, coincidentally just previous to this I answered to a man who's had difficulty swallowing and Neuropathy for the past few months I guess

http://www.medhelp.org/posts/Multiple-Sclerosis/I-have-5-O-Bands/show/1757119?personal_page_id=2660542


Some auto-immune syndromes that are triggered by infections are treated successfully with Plasmapheresis. Are you sure there was nothing out of range in your Complete Blood Count, ESR? when did you take the test?

well in any case let me know how it goes if you want and good luck with the Docs!

[Angela1118]

This began in 2005, with the left side of my face, hand and foot tingle and twitching. I went to a Neuro Dr and he believed it was caused by TIA's. My symptoms went away and I forgot about it. I did have other symptoms like muscle spasms in my back, neck and under my breasts after that, but ignored them as well. I also recall that, in my forearms it felt as if, there was something crawling under my skin and it would come and go. The next major symptom was in 2007 when I was pregnant. I had muscle twitching and spasms in my legs in bed at night, my Gyno thought it was RLS and I ignored that, and it went away. I began having emotional outbursts in 2009 but, I believed this was do to a relationship breakup and going back to college for Nursing. I assumed that stress and anxiety was causing them. I  did see a decline in my cognitive skills and memory, and I began taking Adderal, bad move! I believe it sped up whatever this is. In 2011 I began having major spasms in my feet and  then constant twitching in my toes. Everything just became worse. In Feb after the attack I had, it moved to both sides of my body and I have stopped taking the Adderal and it did slow things, but they have progressed. My symptoms haven't stopped this time. I have had all my levels checked and all of them, but the Cholesterol were normal. My Cholesterol was a little high. They checked for Lyme disease, ANA test?, and other diseases. My kidneys, heart and liver are all dandy. My Nurse Practitioner, (whom I totally think is awesome!) explained that all the tests, were to; rule out all other diseases. My Neuro doc did the R test and told me that, he thought I had nerve damage. I believe that I can tell when my O2 is low now, because I do feel dizzy, drunk like and I have memory issues during it. I think that has been going on since 2009. I also had some urinary incontinence, for the last couple of years, which that has gone away since I stopped the Adderal!! I think this is why they were thinking it was MS???. I know that my body has changed mostly in the last 5 months. I believe I have the spinal tap, spinal MRI and EMG to go as far as tests???. I do have a cousin who has PLS and we are cousins because our mothers are sisters and they married two brothers. We share a great deal of genes. I also have a cousin who has MS. Thank you.    

[Gio77Italy]

there are many conditions that mimic MS or ALS and are often misdiagnosed.

There have been many people recently showing unexplained and sudden neurological symptoms.

the edema could be caused by peripheral neuropathy. I believe it's either that or something affecting the kidneys.

there was a man on another forum with swollen hands and feet in conjunction with neuropathy and other symptoms which I believe started after an infection maybe viral. he was also losing hair a bit and slight loss of vision.

which blood tests did you take? are you sure there is nothing out of range? when did the symptoms begin and was it all of a sudden?

is there anything affecting your mental status? confusion, lack of short term memory?

anything going on with your vision? slight loss of vision or visual field? try to self-test with a simple Neurological test, the Romberg's test, look it up on youtube to see how it's done.

I also had some auto-immune syndrome that seems to be regressing now, for some weeks at night my heart beat would slow down and I'd wake up from it, not breathing very well and panicking a bit too. I hadn't even realized it had slowed down I checked the heart beat rate after reading something on the internet.

I figure it happens more during the night because normally the Autonomic nervous system is slowed down at night, it depends on the daylight.

If that is your case try not to panic check your heart beat until it stays over 60 bpm you shouldn't worry.