Old 02-13-2010, 10:39 AM #1 (permalink)
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Default Possible ALS? (having trouble posting)

My symptoms of weakness began about 4 years ago. It started in my lower legs and would make it hard for me to walk for about a week, then it would go away. A few months later it comes back and the weakness is worse. By now, the weakness gets so bad, I have a wheelchair and a walker. I have to have help bathing, cooking, cleaning. During my episodes I have to stay in bed and each time. My muscles ache or cramp, and just feel overworked, though I've done nothing. I've had twitching for 2 months, in my abdomen, face, and limbs.

Now I have been told ALS, PLS, and other MND symptoms do NOT come and go like this but I did have a nurse tell me it's possible. She is the one who got me thinking ALS but I don't think I "fit" and I'm hoping to get answers soon.

I've had a few other health issues since 2005. Severe dizziness that is not vertigo, headaches that last for weeks, numbness, and tingling in my face, hands and feet. A few weeks ago I started having burning pains in my upper back but they refuse to check me for a herniated disc. They said it's rare to have one that high on the back? I have seen a cardiologist, ENT, and a neurologist and so far....no answers. They think I may have two conditions at once....or something rare. All of my symptoms fit Lyme disease but I have yet to be tested for this. My MRI in 2005 was normal and they said it was not MS but I am being retested in a few weeks. I'm also going to ask for the Lyme test, EMG test, and I think they also want to do the spinal tap.

This has left me disabled, unable to work, and penniless. I don't have money to keep being tested for everything and I'm at my wits end after 4 years with no answers. My next appointment is Wednesday with my neurologist but I can't keep "waiting and seeing" for something else to happen. Since I don't have money, I can't rush these tests and I have tried all the financial assistance groups I can find in my state.

My last blood test showed low platelets but nothing to be concerned about, and they are having trouble drawing blood now. It took 20 minutes to get 4 vials. My head CT last week was normal. My last MRI of brain and spine in 2005 was normal. I had another MRI for a herniated disc in 2008 and it was normal. Thyroid is normal as well. I've been checked for diabetes and anemia numerous times. Sure I can wait and see in a few weeks but the waiting doesn't make me feel too good at the moment and I'm just needing any suggestions or advice you can give.

My questions are

1) Can the weakness come and go, or get worse one week and a little better the next? My weakness lasts 2 weeks at the most and then can disappear for months. (though my other symptoms are always present)

2) Does this even sound like a NMD? Even without the dizziness and headaches?
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Old 02-13-2010, 11:33 AM #2 (permalink)
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Default Re: Possible ALS? (having trouble posting)

I'm very sorry to hear about your health issues. Definitely something is going wrong. Unfortunately I can not offer any suggestions about what it might be. As far as ALS, it really never gets better and worse the way you have experienced. Sometimes there may be a little variation from day to day but it never gets significantly better. So I would rule that out.

Maybe your Lyme idea is a good one. MS is known to come and go. When I was being diagnosed they looked for that too, and I had the clean MRI. But several doctors have told me that the MRI is not 100% certain for diagnosing MS. They look for little speckles, but there have been cases where people do have MS but have no speckles. But again, I know almost nothing about this, and would have to defer to the doctors.

It is only a small issue, but for drawing blood, if you drink a lot of water beforehand it may increase your blood volume and make it flow more easily.

Again I can only offer support as you are going through this, and hope that you will get some answers soon.
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Old 02-13-2010, 12:12 PM #3 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Thanks halfin for your reply. After years of dealing with stumped doctors it's hard to deal with, which is why I ended up here. I don't know from one day to the next how I'll feel or what other symptom will pop up...and it's ruining my quality of life. I feel for anyone dealing with a horrible disease. Having to deal with my own condition has taught me great compassion and empathy for others in this situation.

I hope my diagnosis comes soon. My last "episode" was so scary and I was rushed to the ER twice in 4 days. I'm afraid of how bad the next one will be.

Thanks again for your support and I hope you have a nice weekend and a happy Valentines day.
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Old 02-13-2010, 02:47 PM #4 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Hopfu 1,

I am not a dr but it does not sound like ALS.

How are your reflexes? Did the nuero mention anything about a hoffman sign, babinski sign or any other upper motor nueron signs.
Is it just a regular nuero that you are seeing? IF so you really need to see a good nuermuscular specialist.

Is the weakness just in your legs, when it comes on? Do you have any real atrophy?

It's good that you are getting another Brain MRI.......
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Old 02-13-2010, 04:06 PM #5 (permalink)
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Default Re: Possible ALS? (having trouble posting)

My reflexes are normal and the last time I had a babinski, in late 2008, it was normal. I've never heard of a Hoffman sign.

I'm seeing a regular neurologist but he's the best in my area. The weakness began in my legs, and the past few months has started in my forearms. I do not notice any atrophy but I've been so inactive for so long that I have lost muscle tone. I don't think I have "wasting" of the muscle but I'm not sure what that even looks like.
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Old 02-13-2010, 04:32 PM #6 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Hopeful 1,

My parents actually moved to Gainesville GA after my dad retired, so I'm pretty familiar with where you're located. IMHO, I'd ask for a referral to a neuromuscular neurologist in Atlanta. Its a bit of a drive, but I used to make the drive to Gainesville regularly from the airport in Atlanta, and its within a reasonable distance.

Good luck to you, I hope you get some answers, & try not to get discouraged as the process can be a long one.
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Old 02-13-2010, 04:56 PM #7 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Of course, like almost everyone else here, I am not a doctor, and your symptoms don't sound anything like ALS to me. The weakness caused by ALS comes and doesn't go away.
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Old 02-13-2010, 06:44 PM #8 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Have you tried the MDA, they might be able to help you pay for your tests.
If your reflexes are normal it is more convincing that is not ALS or PLS.
You would know if you had wasting of the muscle.

Last edited by crystalkk : 02-13-2010 at 06:46 PM Reason: added something
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Old 02-13-2010, 07:46 PM #9 (permalink)
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Smile Re: Possible ALS? (having trouble posting)

Hopeful 1,

I didn't mean to imply that I thought what you described sounds like ALS to me... I was just saying that if solid answers aren't readily forthcoming, that its worth the drive to get an opinion by a doctor who's expertise is in the neuromuscular field.


Good luck to you!
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Old 02-13-2010, 08:01 PM #10 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Hi there, I have read what you wrote down about your health issues, I hope you get a DX soon. It sounds like it could be lyme Disease to me but, then again MS has the same symptoms. Your best bet is to get some blood work done and an EMG but, they always don't have to show anything for something to be wrong. It sounds serious especially laying in the bed and can't take a shower alone. Please keep us updated. Add me to your friends so I can find out . Worried about you in Detroit. Doug. GOD Bless you.
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Old 02-14-2010, 04:41 AM #11 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Thanks rose, trfogey, and dougindet. I have been worrying myself over this for days. I think the nurse was way off base for freaking me out like this. I couldn't eat for days after she told me that.

I will see if my neuro will refer me to a neuromuscular doc but I really don't know how I can afford that. I'm using my grocery money and power bill money to see my neuro this week. I am trying again to get emergency medicaid but they keep telling me I have to be pregnant or olderly to get approved. This is all so scary. I hate waiting.

Doug, God bless you too and I sent you an add request
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Old 02-14-2010, 05:29 AM #12 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Quote:
Originally Posted by hopefu1 View Post
My symptoms of weakness began about 4 years ago. It started in my lower legs and would make it hard for me to walk for about a week, then it would go away. A few months later it comes back and the weakness is worse. By now, the weakness gets so bad, I have a wheelchair and a walker. I have to have help bathing, cooking, cleaning. During my episodes I have to stay in bed and each time. My muscles ache or cramp, and just feel overworked, though I've done nothing. I've had twitching for 2 months, in my abdomen, face, and limbs.

Now I have been told ALS, PLS, and other MND symptoms do NOT come and go like this but I did have a nurse tell me it's possible. She is the one who got me thinking ALS but I don't think I "fit" and I'm hoping to get answers soon.

I've had a few other health issues since 2005. Severe dizziness that is not vertigo, headaches that last for weeks, numbness, and tingling in my face, hands and feet. A few weeks ago I started having burning pains in my upper back but they refuse to check me for a herniated disc. They said it's rare to have one that high on the back? I have seen a cardiologist, ENT, and a neurologist and so far....no answers. They think I may have two conditions at once....or something rare. All of my symptoms fit Lyme disease but I have yet to be tested for this. My MRI in 2005 was normal and they said it was not MS but I am being retested in a few weeks. I'm also going to ask for the Lyme test, EMG test, and I think they also want to do the spinal tap.

This has left me disabled, unable to work, and penniless. I don't have money to keep being tested for everything and I'm at my wits end after 4 years with no answers. My next appointment is Wednesday with my neurologist but I can't keep "waiting and seeing" for something else to happen. Since I don't have money, I can't rush these tests and I have tried all the financial assistance groups I can find in my state.

My last blood test showed low platelets but nothing to be concerned about, and they are having trouble drawing blood now. It took 20 minutes to get 4 vials. My head CT last week was normal. My last MRI of brain and spine in 2005 was normal. I had another MRI for a herniated disc in 2008 and it was normal. Thyroid is normal as well. I've been checked for diabetes and anemia numerous times. Sure I can wait and see in a few weeks but the waiting doesn't make me feel too good at the moment and I'm just needing any suggestions or advice you can give.

My questions are

1) Can the weakness come and go, or get worse one week and a little better the next? My weakness lasts 2 weeks at the most and then can disappear for months. (though my other symptoms are always present)

2) Does this even sound like a NMD? Even without the dizziness and headaches?
Hi sorry to read about your health problems and pleased to hear you are trying to rule out Lyme disease. However with the controversy over diagnosis and treatment over lyme Disease it is difficult to properly exclude. Research shows blood tests to miss up to 50% of cases.

You might like to read the story of Dr Martz ALS then Lyme diagnosis, But Dr. David Martz knew whatever he had was worse than the flu.

have a look at my blog Looking at Lyme Disease LOOKING AT LYME DISEASE and especially check out the various charities for Lyme disease but especially ILADS - International Lyme And Associated Diseases Society

Good luck with finding something that helps you find out the cause of your illness.
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Old 02-14-2010, 05:50 AM #13 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Hi I am sorry to hear of your health problems. The controversy over diagnosis and treatment of Lyme disease leaves most physicians believing blood tests are 100% reliable. Research shows blood tests for Lyme Disease can miss 50% of cases details can be found on ILADS website under their presentations to IDSA review panel.

If you haven't already read Dr Martz story do google Dr Martz and you will find Canadian Lyme Disease Association have his story. He was in 2003 diagnosed with ALS and given 6 months to live. He subsequent found it to be Lyme Disease and on aggressive long term antibiotic treatment has recovered his health. He went on to open a clinic specialising in ALS and Lyme Disease and presented his research studies at the ILADS conference 2009. He will be presenting at ILADS London conference in June 2010 details to be announced.

I just posted links on my blog Looking at Lyme disease.

Good luck in finding the cause of your ill health.
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Old 02-14-2010, 02:02 PM #14 (permalink)
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Default Re: Possible ALS? (having trouble posting)

Are you a diabetic and are your readings in normal range or out of control?
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Old 02-15-2010, 09:38 AM #15 (permalink)
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Default Re: Possible ALS? (having trouble posting)

I replied to your other post. Please find a way to get to the neuromuscular clinic at Emory. Even the best local neuro can't be as good diagnostically as those at Emory.
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