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alex321

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Hi my name is Laura, and I've been having symptoms for a while that seem to be getting worse very quickly. I think it started with my index finger. For months now it seemed to be weak. When I would grip something really tight and let go it would just lay there limp. I didn't really pay any attention to it, figuring that I might have injured it somehow

More recently I noticed that my left arm and leg seemed to be getting weaker. I had the feeling like I was off balance and that my right side was compensating for the left side. My legs also started becoming very sensitive. and light and bouncy. I get regular twitching that is very strong, mostly in my legs but I can feel it all over my body. i also seem to be losing muscle and strength.

My muscle weakness was starting to scare me so I went to the hospital and had a neurologist look at me. He said I was hyper-reflexive, which I guess would explain the weird feeling in my legs. He also scraped the bottoms of my feet and my feet didn't do anything. He said that was abnormal.

I've had MRI's that came becak normal. I've been tested for almost anything you can think of, all which came back normal so I'm very scared that all of my symptoms are pointing towards ALS.
 

liz

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Welcome

Hi Laura -

Have you had EMG and nerve conduction tests? If the neurologist suspects any kind of MND, these would be ordered. Good luck.

Liz
 

alex321

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Liz, no they haven't yet. I'm going to try to make an appointment at an ALS clinic.

Do my symptoms seem like ALS to you? I know it's a difficult question to answer but any insight would be appreciated.
 

liz

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Laura -

I can't tell if you have ALS or something else. It's no use speculating and you can drive yourself nuts trying to. If you are having severe anxiety going through this process, there's no shame in taking some meds for that. It can take the edge off the tension and help you think more clearly so you can understand what the docs are telling you. It can also help to bring someone along to these appointments for reassurance and as a second set of ears.

Liz
 

Jamiet

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alex,

How old are you?

I would get to a specalist clinic, they are the experts
 

alex321

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I'm 29.

I think I'm going to try a speciality clinic but I'm nervous because I heard that they don't take my type of insuranse.
 

brooksea

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I would think if you can get a referral from your neuro to be tested at an ALS Clinic, the MDA would pay for it if your insurance won't. Call and see.
 

liz

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Hi Laura -

A lot of folks have limits with their insurance which prevent them from seeking specialty care without first going through a regular neurologist for preliminary testing then, if indicated, a referral to a specialist. If that is your situation, you could try to find a well-regarded neurologist covered within your plan. Maybe your local MDA branch could recommend someone. It is good that you're thinking this through.

Liz
 

alex321

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Thanks everyone. I'm going through a really tough time with all of this, and I appreciate the replies.
 

liz

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Hang in there, Laura. This will all get sorted out one way or another. You've probably still got a bunch of "rule outs" before ALS is the only diagnosis left. ALS is rare enough that odds are always good that "it" is something else. Keep hoping.
 

Just J

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Much appreciated information

Hello All. I found this forum after doing research today on symptoms that my husband is having. We've been through 2 yrs of hell and no diagnosis (I'll try to be brief). About 2 yrs ago he began having major numbness in his feet. By Aug 2006 his mobility got so bad that he had to give up his favorite passion, golf. Yes -- we were going to doctors since Jan 2006 Orthopedist and Neurologists. He has been tested for Lyme's disease and MS. He had surgery in Jan 07 to releive pressure on C4, C5 (fusion) and again on Oct 03 to re-do surgery and include C6 in the fusion. Result NO RELIEF of symptoms. We are in the Baltimore area and are dealing with Johns Hopkins Doctors so felt like we were in good hands. Long story short...after 2 surgeries there has been no relief. His primary symptoms are complete numbness in both legs, stiff legs (he cannot bend at the knees). He has to pick his legs up to get in bed. Has constant muscular cramps in legs and constant fasciculations in legs. Has major instability in walking and difficulty goiong up and down steps and standing in the shower. He has no muscle weakness in his upper body or hands so we assumed that ALS was not a possibility but after reading some posts I am not convinced. BTW - my husband is 58.

He is going to try to get back in to see another doctor. I saw the recommendation to see an MDA Neurologist...any other suggestions? It is much appreciated.
 

ltr

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Hi Just 1 - sounds like you and your husband are going through the same hell that many of us here are in. I am really sorry about that. In my opinion, an MDA neurologist is no better than any other neuro. It's all hit or miss. Some of us have gone to Upstate medical, an mda center, and had the absolute worst care possible. Now I am going to another mda clinic where I finally got a diagnosis of myopathy, but the care is horrible. My local neuro has been handling my case and is very caring, keeping in touch with yet a different specialist. Johns Hopkins is supposed to be one of the best and I actually just made an appointment there for Jan 4 in hope that they could give me some more input, since my symptoms don't match my diagnosis and my treatment isn't really working. It's always disappointing to hear that a facility we put our faith in is even having a hard time with someones diagnosis. I hope your husband pushes for a diagnosis, visits more clinics until he gets one. He may be missing out on treatment. Did he have a muscle or nerve biopsy? Many clinics rely on a bad emg before they will do a muscle biopsy, but this is bad medicine seeing as my biopsy was positive before my emg was. Good luck and keep working for a diagnosis.
 

Just J

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ltr thank you for your input. We think he had EMG (he's had so many tests MRIs its hard to keep straight). Anyway, he thinks he's had 2 EMGs that showed nothing. But not Muscle biopsy. I will add that to my notes. Since last week I am making a journal b/c we have finally gotten sick and tired of not getting answers and have come to realize that we really do need to be our own advocates. I only informed him last week that his symptons could be a MND. He is processing all of this and having been an athlete his whole entire life it will be hard for him to hear a diagnosis that can not be fixed with surgery. I believe that is the most frustrating DX of all -- NO DX. Good, bad, or ugly...we just want to know what's wrong so we know what we have to do.
 

vmd

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Laura:

As you know by reading the many posters here, the diagnosis turns into a process. I will keep you and your husband and rest of the family in my prayers.
 
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