Very worried that I have ALS: please help

johnnyliverpool1: I guess I wasn't clear, sorry. The reason I said I doubt WestNile is actually coming from the neurologist himself. He said that it would be rare to contract that in Ontario and for symptoms to appear at start of Winter when there are no mosquitos. Also the internal med Dr. said that he doubts I have Guillain Barre because my symptoms and the progression are not the same.

I am just very scared. I am in constant discomfort and legs feel like lead is attached to each when I bend them and try to walk, especially upstairs. I have also had tightening in my throat (like I am being choked) for past 2 months that is yet of unknown cause, but interferes with swallowing. Was just venting my fears, not trying to irritate people, sorry. Don't know if this is related to ALS but I have dents on legs that I didn't have before.

Anja, yes dr. took lots of blood, 10 vials worth. Checked for everything including arthritis and other inflammatory/autoimmune things. All was normal. Waiting for results of Lyme disease test. Thyroid normal as well. I am finding it difficult to remain calm with how I am feeling. I look at my daughters and run into the bathroom and cry. Yes I know that is not normal behaviour. Hugs to you too, Jill

Joy Im not going to offer any medical advise because i dont have any . What i do have are some medical tests that prove i have a neurological problem but no name for it.
What I can say too is that i have literally wasted 3 years of my life obsessing about whats wrong and assumimg it must be AlS. I am obviously still obsessing which is why Im on this forum. Symptoms with no name are a nightmare. Hope you find the strength to be patient and believe the doctors and do as I say not as I did.
god bless

Jill: a good cry is normal under the circumstances! I experience same stuff as you do! BUT: I do my best to focus on today, understand what i mean? And enjoy all small things in life that are beautiful! Do my best to stay in the moment. I know what you're going through, been there and still in the process... i hope you will have a diagnoses soon, no matter what it will be, anything is better then not knowing what is wrong, take care XOXOXO

Gotta Love my Johnny!

Oscar, thanks for being honest. We need more people to realize how the mind can be all powerful.

Just wanted to give an update. I had a nerve conduction test followed by a clinical exam by a neurologist who then did the EMG. She only did my left leg and arm, and said if it would show anything she would do the right side. Dr. said that i have no clinical weakness, no symptoms of ALS, and EMG was normal. I am very happy with those results. She did say that my eyelid looks droopy and that I should be tested for Myasthenia Gravis. Had blood taken for that and will have EMg for that soon. Still no doctor can explain why my calves feel tight, arms fatigue easily, and throat has a constant choking feeling. Except for a slightly elevated blood calcium level, everything has come back negative.

Thank you all your support, and I wish you all the best.

Joy,

I'm glad you have accepted the NO, to ALS.

Did your doctor explain low calcium levels to you? When calcium levels fall below 2.2 - 2.6, muscles tighten up, painful muscle cramps and "pins and needles" can occur. I was too lazy to look back through the pages to see your symptoms.

As for Myasthenia Gravis; you may not know this, but it is covered by the M D A. Its 1 of the 40 diseases covered by them. So, if and when you get a diagnosis, keep them in mind.

Good Luck,

Thank-you, Toto's Dorothy.
My original symptoms were muscle cramps (still getting them in arms) and tingling in leg, but my calcium was never low. It has always been in that range you mentioned. I was told that my calcium level is 2.48 which is in the range you mentioned but the Dr. at hospital told me that 2.48 is slightly elevated. Who knows maybe that hospital uses a different range for normal.

Don't quite know what you mean that Myasthenia gravis is covered by the MDA? Did you mean financially, that they pay for treatment? I am very fortunate that I live in Canada and we have a phenomenal health care system that pays for almost everything, all doctor's visits, specialists, procedures, tests, treatment, operations, etc.... They don't pay for oral drugs, but if you have your own private insurance that will cover your medication. But I will look into that if I need to. Thank-you

Joy,

I guess it shows how observant I am. I did not realize you were from Canada. MG is 1 of 40 different diseases that are covered by MDA. If you are diagnosed or even before, you would be able to go to an MDA clinic. If you need any type of equipment, you are also entitled to rummage through their loan closet. Also, the doctors there probably are a little more well versed in the disease. But now I realize that you are blessed to have excellent health care coverage. But just remember, they are there if you are diagnosed with MG. They may be able to explain the treatment plans that are available.

Good Luck,

Oops, sorry. Off to mod land. Sorry guys, I know not what I typeth!