Status
Not open for further replies.

Rainbow5

Member
Joined
Sep 25, 2013
Messages
12
Reason
Learn about ALS
Country
US
State
Dc
City
Washington
Hi all,

Thank you for reading this - it means a great deal to know that folks are out there willing to provide support.

This is not my first time in life with health issues. I have successfully experienced, with purposeful resiliance -epilepsy (since 12, well controlled) a fall down the stairs, broken back, aspiration pneumonia, breast cancer (double mastectomy), two children with serious chronic health problems (the biggest challenge of them all)...

I'm happy to report, and extremely thankful (!) that I am currently able to work full time, take care of my kids and my wonderful, wonderful dog (single Mom) and to enjoy "the little things"...

But...

I am now going through a full workup for MS. And the other "stuff" did not make me "mad" - I was anxious, scared, and swore that none of the "stuff" would ever get the best of me. I still struggle with my one child's serious chronic health issue (anorexia) - it is terrifying.

Why now do I/my kids need to go through another "thing"? That is of course a rhetorical question, and I guess that I am just venting but sure feel the need to do so.

My sibling has MS; he was diagnosed 5 years ago. He has had bad periods, and yucky medicines, but overall has been very lucky in terms of his symptoms.

I am finally getting tested... I have resisted it thinking that it would not make a difference. But after tripping, falling, pain, and now serious walking and balance issues, I went to my internist who sent me to a neurologist (I have seen neurologists all my darn life with the seizure disorder) to do a workup.

Saw her last week; she is a calm, nice, practical woman and I am glad to have met her. She was very forthright. She said, after having me do all of the "tests" that my symptoms are not normal at all. I have had years of what I have called "my leg pain" - diagnoseded with 'restless leg', fibro., etc. but this is now of a different intensity and quality. I have fallen/tripped multiple times. I am "wobbly" for lack of a better term, feel like I am going to fall, cannot walk without lurching... am in pain more often than not (it used to be that I would have periods without any problems); cannot walk up or down stairs without extreme efforts - avoid curbs, etc.

I was a runner, fit, could bench press my own weight.. and now am unwell.

She has ordered bloodwork up for a number of things (maybe it is something like a vitamin deficiency), an MRI of my brain, cerv., thoracic, lumbar with contrast and an EMG.

So Im not blind to what may or may not be coming. But just MAD.

I don't know what else to say; I don't like to complain. I don't want to tell my family because of my brother.

I did say something to both kids (teens) - as I learned a lesson in the past. When I found out I had breast cancer, I did not tell them until I needed a full mastectomy. And they felt betrayed/that I had kept a secret. so I just said, "You know I have had my "leg pain", and that I have asked you to help me with things a lot more lately so I saw a doctor and I am going to have some tests". They asked "for what", and I said, it could be something very easy to deal with, like nothing (!) or it could be something that we will just deal with, as we have done in the past. My daughter, who worried that I would die from the breast cancer, said "Will this make you die?" and I said no, I truly don't think so - we will figure this out.

Enough writing - if you have read this thank you...I just don't really want to deal with this - not to whine, just to say "Darn it all!".
 
I've been tested for MS recently too. They found 10 lesions in my brain but they aren't able to figure out if they're from MS or something else (stroke, etc). I'm 38 years old.

My sister-in-law was diagnosed with MS 8 years ago. She's now 29 and has almost completely lost the ability to walk. She's still using a cane, but has severe foot drop in both her feet. Anymore progression and she will be in a wheelchair. Even with the MS, she works full time and just adopted a baby. She lives a full, happy life. I hope that you don't have MS, but I hope that you don't have ALS even more. At least MS is manageable. Good luck to you.
 
Hi -

That must be scary about finding lesions. Glad that your sister has been functioning well, and that is super exciting about the baby.

What are next steps for you?
 
(I forgot to add that I have super brisk reflexes and Hoffman's sign and something else that I forgot).


But after tripping, falling, pain, and now serious walking and balance issues, I went to my internist who sent me to a neurologist (I have seen neurologists all my darn life with the seizure disorder) to do a workup.

Saw her last week; she is a calm, nice, practical woman and I am glad to have met her. She was very forthright. She said, after having me do all of the "tests" that my symptoms are not normal at all. I have had years of what I have called "my leg pain" - diagnoseded with 'restless leg', fibro., etc. but this is now of a different intensity and quality. I have fallen/tripped multiple times. I am "wobbly" for lack of a better term, feel like I am going to fall, cannot walk without lurching... am in pain more often than not (it used to be that I would have periods without any problems); cannot walk up or down stairs without extreme efforts - avoid curbs, etc.

I was a runner, fit, could bench press my own weight.. and now am unwell.
 
Sorry to hear of your leg weakness/problems. I also have brisk reflexes and was told I have a positive Hoffmans in my right hand. Honestly, brisk reflexes and Hoffmans do not necessarily mean anything. Some people are brisk by nature. My hand/arm is where my weakness and problems are. I have several hundred muscle twitches that happen every day since last May, which started in that arm. I saw an als doctor at the University of Utah als clinic who ruled it out because I still have strength in it and no atrophy. I understand the concern and worry but please try to not specifically worry about als. There are so many different disorders and conditions that can cause limb weakness.
 
I'm not as worried about the reflexes; I am, on the other hand, concerned about the weakness, falling, and trouble walking. And the increased "wobbiliness" - don't know what else to call my legs. When I walk, I feel very unsteady and walking straight is hard. I cannot balance at all on either leg, although one feels stronger than the other; weird.
 
And of course, constant, constant pain.
 
Status
Not open for further replies.
Back
Top