Confused and going insane!

[ellisa]

New, scared and confused also
Hi, Let me start by first apologizing if I am not sending this correctly (Sorry).

I Found myself here trying to find answers to what has been going on with me for the past 5 almost 6 months now. I guess I should start by explaining a little about myself before I start rambling on about what has been happening to me. I am a 36 year old female from New Orleans, Louisiana, married and have one daughter age 5. I am currently under the care of a neurologist who I feel is dragging his feet or maybe I feel this way because I am scared and do not know how to prepare my family or myself for the future when I do not know what the future may have in store for us. I have undergone extensive blood work all were negative. Had MRI with and without contrast of brain and c-spine only revealing herniated discs at C4 and C5, 24 hour urine test negative, and I have also been tested for Lyme disease along with Wilson’s disease need-less-to-say both were negative. So due to process of elimination where or what should I do next. My gradual decline is terrifying me and yet there or still no answers.
I suppose a brief synopsis of my symptoms would be appropriate, because I suspect and I believe my MD. Also, suspects ALS but is not finished using me as his personal pin cushion. Okay it all started the middle of July 06 when Right arm and hand were entirely numb, cold to touch, swollen and turning colors. Went to General Practitioner thought it could possibly be pinched nerve in arm, went back 1 week later and referred to Rheumatologist , thought auto-immune disease like Lupus, Scleroderma etc.... all test neg.
I then started with tremors in right arm along with numbness in left foot in toes, difficulty walking, and slurred speech along with trouble swallowing. Referred to Neurologist that was 5 months ago and a noticed general decline. I cannot drive anymore, weakness in leg, foot, arm and hands with increased numbness in right hand and fingers. In the past 2 weeks have noticed my breathing becoming a struggle along with burning in my left foot and right fingers along with cramping under my right and left rib cage. My speech is okay but have problems pronouncing some words. Eating and drinking lately has become a very careful task because certain foods and liquids seem to get caught have way down. Have not worked since Aug. 06 due to limited ability and or difficulty in walking (Become exhausted very easily). I have many more symptoms/problems but no need to bore. I guess my question is where do I go from here open to any suggestions. I am really scared and confused! Any ideas on what this could be would also be helpful. I am going insane with the not knowing.

Thank you in advance and God Bless,
Ellisa

 

[Al]

Hi Ellisa. Sorry about your problems but a lot of your symptoms don't sound like early onset ALS. You have a couple that might be but the numbness and swelling and turning colors sound more like a spider bite or scorpion to me. Has your Neuro suggested an EMG or NVC test yet? Try not to worry (hard I know) until you get more tests. AL.

 

[ellisa]

Hi Al,

Thank you for the reply. But the swelling and color changes did not last long maybe one to two days. Have appointment tomorrow going to suggest those two test. Mt.Pockets has told me has well to ask for them also. What exactly are the early signs of ALS. Oh Have been bit by spider in spring of 05 in Leg and let me tell you not a pretty site, it left a hole in leg due to infection. Now a scorpion you have got me there! (lol)

Thank you again

Ellisa

-have an appointment tomorrow with neuro-

 

[Al]

Let us know how you make out. I was told when first diagnosed that the most common signs were dropping things , tripping or stumbling and general weakness. I didn't have that at the time so the Neuro didn't think I had ALS. Fooled him didn't I?

 

[ellisa]

Most certainly will do. This site is wonderful it has really help relieve some of my anxiety. Keep up the good work.

thanks again Ellisa

 

[ms.illini]

hi Ellisa, Iam 37 and your story reminds me of 4 years ago and could be about me! Keep your chin up and foucas on today.

 

[ellisa]

ms.illini,

Thank you for your support. Went to neuro appointment today and need-less-to-say more blood work not quite sure what was order something to do with the muscles. Also have an nerve conduction test for Dec. 18th.
But still can not get Doctor to give me the slightest hint of what he thinks it may be just more test and waiting.

Ellisa

 

[liz]

Aaaargh!

Ellisa -

I think not knowing is definitely worse than knowing even if what there is to know is bad. I strongly suspected beforehand that I had ALS and actually felt better when it was confirmed because then I knew for sure what I was dealing with.

Liz

 

[Al]

He probably doesn't want to freak you out with a bunch of "It might be this" or that, so you just have to wait and try not to freak out and don't get carried away doing research. You will find some sites that will scare you and some that will try to take your money. Be careful. AL.

 

[Paty]

Ellisa this is a wonderful place

Ellisa I am my husband's caregiver he was diagnosed with A.L.S., on October 2005, but started with symptoms on March.

He took a lot of test and all came out negative, so what was left was a positive A.L.S. Dx. I thank God I came up with these forums and these wonderful people, specially GrampAL, who gave me a welcome message and has given me support.
I am from Baja California, Mexico.

May God bless you and I will be praying thay you don't come with an A.L.S. Dx.

Paty

P.D. I've made some friends and we e.mail each other for support.

 

[ellisa]

Thank You all so much

Thank you all for the great support and information. But I have to agree that it the not knowing and waiting that is the most scariest and frustrating part for me. If I knew what life had in store for my family in me then we could prepare and deal with appropriately, But how do you prepare when you do not know what your life is going to be like the next day? The hardest part of waiting for me is what to tell my 5 year old daughter when she ask her mommy to take her to the park, play hide and seek, or just to take her to McDonald's, I CAN"T TAKE HER! She just wants her old mom back will she ever return I DO NOT KNOW. I have stopped trying to find answers to these question and have started preparing myself mentally for what may be. I am so grateful I have found this forum at least I know there are people out there who can relate to what I am feeling. Thank you all so much!


Al-Have stopped looking for research like a crazy woman on the Internet. The only place I go now is this website for the answers to my questions and concerns. Because some sites will scare you death. Thank you Thank you Thank you.


God Bless
Ellisa

 

[Al]

Hi Ellisa. We don't claim to be the smartest people here but we are some of the most caring on the net. We will try to help you as much as we can and try to steer you in the right direction when you ask questions. We're not doctors but we live it every day so have a pretty good idea of what is going on and a lot of us have done quite a bit of research and scared ourselves half to death so you don't have to. Have a good day. AL.

 

[ellisa]

Al,

The Support and caring her is wonderful. I Do have a Question to ask.

Tried on a Pair of shoes yesterday that last winter were to small (size 71/2 wear 8 to 81/2) well low and behold tried them on yesterday to go to Doctor they actually fit almost to big. It is like I lost weight in my feet. I also find that my wedding ring and watch are becoming to big. Have you ever heard of this happening like hands, wrist and finger are shrinking. I know this sounds wild but just wandering. Told MD yesterday Looked concerned but no answer. Thank you again to responding to my rambling I really appreciate it.


Ellisa

 

[liz]

Ellisa -

I had myself so worked up by the web research I did before my first neuro appointment that the doc took one look at me and put me on Xanax. As if that wasn't enough, three days after my final diagnosed I had a huge panic attack and ended up being sedated in an ER for four hours until I could stop hyperventilating.:| This process definitely does not bring out the best in us. I'm still feeling pretty edgy just waiting for my first appointment at the ALS Clinic. Can't help but worry if there's even more bad news coming. What a roller coaster ride.

I see Al recommends Merlot but I've got a preference for cheap Amercan whiskey, a glass or two of which in the evening works better than the Xanax. Better still is snuggling up with my seven year old and watching the Simpsons on TV. We just have to find what relaxes us and make it a priority.

Liz

 

[ellisa]

Liz,

Well Merlot and cheap American whiskey I don't drink but may have to start (lol). The Doctor put my on Limbitrol yesterday to help me sleep at night.