opinions from people who know.. kinda scared

[karla r]

Hi, just wanting to know if my doctor is on the right track, or if I should maybe look for a new doctor. I guess cause I am a little scared. Here is what happened. I noticed numbness and problems with my leg, first the right. Originally, they said after tests. I had had a minor stroke. September of 2013. My leg kept getting weaker. Brace for drop foot, walker cause I started falling a lot. Then the other leg, and my hands started with numbness and tingling, and weakness. They did MRI, not a stroke. They did nerve studies, with electo and with needles. Neuropathy, caused by diabetes, was the diagnosis in May 2014. I worked really hard to try to regain strength, and steady my gait, so I wouldn't fall so much. But I kept losing muscle strength. My legs got noticeably thinner. I went back, because I just seemed to be getting weaker and weaker. So, they did more MRIs. Head, no stroke again. Spine, no pinched nerves, nothing that would explain the problems. Joints, no torn ligaments, ect. Changed some meds, no effect. Now, I can barely walk. I can barely get up from a chair, sometimes I can't without help. I can no longer even assist in getting myself up from the floor when I fall, not enough strength left in my legs or arms. My doctor noticed that I have badly wasted muscles in my legs and arms. They did new nerve studies. My neurologist said that they are abnormal, and nothing in the MRIs explain the muscle wasting. So she did some stuff to test reflexes. She said I had hyper reflex. She then ordered an evaluation for a power wheelchair. Then she said I needed a muscle biopsy. Then she said I believe, given your history, the results from all the tests so far, the clinical signs I have found, that you may have ALS. She wants the biopsy done asap, and back to see her in a month for a firm diagnosis. Does this sound like anything any of you have experienced?

 

[karla r]

I should explain by tingling, I mean it is this weird fluttering feeling, and that spot kinda flutters. The doc observed it and said it was muscle trembling?

 

[Barbie]

I suggest you make an appointment at an ALS clinic and get a second opinion for your own piece of mind. An EMG with your exam is usually required to diagnose

you can find a nearby als clinic by going on the ALSA website.

 

[Atsugi]

It might not be ALS. Then again...

Unfortunately, you have cause to be concerned. Your doctor should be a neurologist who is familiar with ALS.
Then get a second opinion, as well.

 

[karla r]

The nerve test thingy was an emg. I just couldn't recall what she called it.

 

[karla r]

OK. How do I find a clinic? And do I need her diagnosis first? I am not sure whether she is a specialist or not, she does studies for MD? The info on that is posted in her office?

 

[karla r]

And, how fast, if it is ALS, does it progress? In less than 2 years, I have gone from a really strong woman with strong dancers legs, to barely able to walk, and, I'm terrified.

 

[karla r]

I just thought my neuropathy wsd a little worse, or it was a nerve problem, and we would get it fixed, and some pt to gain my strength back, and it was all going to be OK.

 

[Atsugi]

Indeed, it might not be ALS. It might not be fatal at all. But I won't kid you; whatever it is, you need a good handle on it. Is your doctor an MD? Ask her if it would be best to refer you to a neurologist.

Of course, you're scared and need some professional advice. Bring a notebook with you when you see doctors. Get copies of your test results. Ask your doctor if you can be seen sooner than a month.

If it is ALS, ALS progresses at different paces. Some folks have been known to live decades. My own wife died less than a year after her first footdrop. Some folks take years just to get diagnosed.

But don't give up hope. There are many curable diseases things that mimic ALS. I know it's tough waiting for a diagnosis. I wish for you a better diagnosis.

--Mike

 

[lgelb]

Karla, The only SC ALS program I see is in Charleston (MUSC). NC and your other neighboring states have more. Here is a map. It is always best to get a second opinion anyway. Before you undergo the muscle biopsy, I would ask what muscle she wants to biopsy and why. I might also get a second opinion on how likely it is that the biopsy will provide new important information. Based on what you have said, you sound like someone with a nerve disorder, not myopathy (muscle disease). But there are other possibilities, too, and that is why I would go to MUSC or the best program nearer to you. You might also contact the ALSA SC chapter:Care Services ManagerTanieka Ward
[email protected]


or the MDA:
Health Care Services Coordinator Courtney Brown


[email protected]



843 556-3654







since if you are ready for a power chair, whatever you have, you are going to need support.

 

[skipper66]

Get in to see a qualified neurologist a.s.a.p. Hopefully, you have something that just mimics ALS symptoms. Wishing you good luck. We are here if you need us but I hope that you don't. Kim

 

[karla r]

The doctor who said she thought it was ALS is a neurologist. I do not know if she specializes in ALS, but she does treat and conducts studies with medications for MD, muscular dystrophy. My orthopedic, primary doc, and the hand specialist all referred me to her , first when they thought it was neuropathy, then for maybe a worsening of neuropathy when none of the MRIs or blood work showed a cause.

 

[karla r]

Sh, the neurologist is the one who did my emg. The ones with the needles and with the electrodes, and the thing that looks like a taser kinda? That shocks you...

 

[Mediasmart]

There is a form of ALS called progressive muscular atrophy (PMA). I started that way. 1/2 the time it progresses to ALS when the UMN become affected. EMGs aren't like they are with UMN involvement kicks in. It takes a really good and experienced clinic to weed this out and diagnose, specially if there is some general neuropathy going on. Get thee to a good clinic pronto.

 

[karla r]

Thank you for the map. The muscle biopsy is from my thigh, and the neurologist said it was to help rule out other causes from the muscle loss. The emg showed loss of nerve reaction in the legs, and arms. They thought the arms were maybe ular nerve problems, but she said it did not show that to be the case, and said I did not need yo return to the hand specialist.