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Old 11-07-2010, 02:34 PM   #1
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Please help me..

Hi,

I am new to this site so please be patient with me. The first thing that happened to me was in mid August when my left arm completely stiffened up and began to shake uncontrollably. About 20 minutes later, both legs (predominiately the right) stiffened and shook uncontrollably to a point where I could not walk without assistance and even then it was hard because my legs felt heavy. Since that episode which lasted for about 4 days, I have had similar attacks that didn't last as long, however, have noticed that after an episode my calf muscles seem to enlarge and knot up.I have been having pins in needles in hands, feet, face etc..for quite some time as well as extreme fatigue. Prior to this incident, I had fallen 3 times for no apparent reason. I try to go for walks but after about 10 minutes, I start to limp and my legs get extremely itchy. My hands seem to be getting weaker and have started experiencing pain in my ankles and upper part of foot which seems to be worse first thing in the morning. I also experience pain in the calf muslces of my legs. I have twitching that comes and goes in the lower eyelid of my left eye and at times it feels like my tongue is being pulled

I take B12 needles on a monthly basis (have been for 4 years) however, my folic acid and Vitamin D has also taken a nose dive.

I have seen a Neurologist and had a MRI done, however, the MRI came back negative. I got the results from my family Dr and am waiting for a follow up appt with my Neurologist. In his letter to my family Dr., he stated that he wanted to rule out MS and merely stated that there was some sort of functional disorder going on..I am confused and worried. Been off work since Mid August.

The Dr. that seen me in Emergency with my first attack questioned MS or ALS?

Please help me or tell me what I should be requesting next..

Thank you

 
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Old 11-07-2010, 02:59 PM   #2
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Re: Please help me..

I am not qualified to tell you anything other than to pursue a Neurologist, keep track of what is happening and when. Folks on this board will offer more and better advice - could be that neither of the issues mentioned in the ER are in play. We generally do know when "something is up" but exactly what that is will require the process of elimination. That can take time and from all the reading and time Ive spent here - the resulting uncertainty seems to be among the hardest issues to deal with. For those waiting long periods for information - its really tough. I bet within 24 hours you will have several thoughtful responses from some very experienced people. There are people who DO know how you are feeling. Best wishes to you.

Tubajim

 
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pollie67 (11-07-2010)
Old 11-07-2010, 03:11 PM   #3
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Re: Please help me..

Thank you so much for responding to me. It is so hard and discouraging but I am hopeful. What bothers me most is that many Dr's try to push your symptoms away by saying that it is either stress or anxiety. I have suffered panic attacks for many years and know without a doubt that what I am experiencing now is something totally different.

 
Old 11-07-2010, 08:56 PM   #4
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Re: Please help me..

ALS is something that can be tested. MS is generally not dismissed up front because the diagnosis is arrived at by eliminating that which you do not have. Anxiety can mimic MS symptoms. You might want to keep working on your anxiety issues.

Keep asking the questions you need to ask and do not give up!
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Old 11-08-2010, 04:16 AM   #5
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Re: Please help me..

Thank you for writing me I was diagnosed with an anxiety disorder over 10 yrs ago and I have been taking medication for it. If I honesty thought it was anxiety, I would be relieved but I know my body well enough to know that what is happening goes way beyond anxiety.

Woke up this morning and like most mornings in the past few weeks, my feet hurt tremendously when I first stand and it hurts to walk. My muscles are hurting and after being up an hour, I am ready to sleep again..the fatigue is overwhelming.

 
Old 11-08-2010, 06:04 AM   #6
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Re: Please help me..

If you feel it is different, then I would say to seek out the answers you need. Keep a journal of your travails, noting each symptom onset and duration. You might also note what the weather was like at the time too (temperature, atmospheric pressure, humidity). A journal does help assist a neurologist. I think it is also helpful as it allows us to discover our triggers- those things which can cause symptom onset.

If your instinct tells you this is different, I would certainly trust your instinct. Remember, too, that there are over 400 diseases which can mimic MS. Many of these can be eliminated based on early testing, but the MS diagnosis is an arduous task. Stay positive and maintain your patience.
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pollie67 (02-19-2011)
Old 11-08-2010, 05:56 PM   #7
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Re: Please help me..

Pollie,
Im sorry you are feeling like this, its terrifying im sure. Like Jayhawk said, ALS can be diagnosed..there are tests for it. You said you saw a Neurologist, do you know what he specialized in? You really need a Neuro who can help you, not one who specializes in Migranes, which many do...

Talk to the doctors office, find out if the Neuro has significant Neurolgoical disorders in his practice. Ask how many MS patients or ALS patients he has, and if its very low, find another. You sometimes have to advocate for yourself..

Please let us know how you are and what you find out...
Nikki
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pollie67 (02-19-2011)
Old 11-09-2010, 11:28 AM   #8
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Re: Please help me..

I can't really help but I wanted to tell you to keep at that neurologist. Keep making him THINK. If he continues to be baffled, call him on it and challenge him to help to get another opinion.

 
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pollie67 (02-19-2011)
Old 02-19-2011, 08:52 AM   #9
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Re: Please help me..

As each day goes by, I get more and more frustrated. Seen another Neurologist yesterday and he said that like a computer, the hardware is working properly but the software isn't. Because the MRI of the brain is fine, he refuses to do other tests saying that although my neurological problems are real he doesn't think there is a physical problem. He didn't ask about any family history. My brother has spinal stenosis and disk degeneration, there is a history of Frederics ataxia in the family and yet no one will do a scan on my back or neck even though sitting in an upright position cause extreme pain in my tailbone and lower back and when I go to walk I tremble. I have a positive romberg and was noted to have myoclonus by another Dr. but once again, I have been dismissed by this neurologist. My feet feel like they are on fire and hurt so bad when I first walk in the morning. Any suggestions???? Please help

 
Old 02-19-2011, 08:58 AM   #10
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Re: Please help me..

Another thing that has happened...I had 5 lumps and swelling under my arm. My Dr. gave me antibiotics but did not do any blood work or scans. It has been 3 weeks since I have taken the antibiotics and the swelling remains. Don't know if all of this could be somehow related to all the other neurological problems I have been experiencing. It is scary considering my sister had breast cancer 3 times and my mom had breast cancer. Why is it so hard to get answers??

 
Old 02-19-2011, 09:16 AM   #11
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Re: Please help me..

Pollie, Sorry to hear of your continuing travails. What kind of neurologist have you seen? As to the lumps under your arms, is the swelling lymph nodes? Are you having any infections ongoing? Recent injuries? When my lymph nodes have swollen, it has been tied to an infection. An oncologist should be consulted if you have a family history of cancer.

Perhaps you need to find a new neurologist to start the process over. Fresh eyes can often bring resolutions. If the new neuro gives you the same diagnosis as the one you were provided, then that is what you need to move forward in your battle.

Are you limited to medical care in Nova Scotia only? Check with the MS Society or Association and see about a referral. Hold the neuro to running through the revised McDonald Criteria if you suspect MS. The answers are coming.
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Old 02-19-2011, 09:32 AM   #12
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Re: Please help me..

Quote:
Originally Posted by MSJayhawk View Post
Pollie, Sorry to hear of your continuing travails. What kind of neurologist have you seen? As to the lumps under your arms, is the swelling lymph nodes? Are you having any infections ongoing? Recent injuries? When my lymph nodes have swollen, it has been tied to an infection. An oncologist should be consulted if you have a family history of cancer.

Perhaps you need to find a new neurologist to start the process over. Fresh eyes can often bring resolutions. If the new neuro gives you the same diagnosis as the one you were provided, then that is what you need to move forward in your battle.

Are you limited to medical care in Nova Scotia only? Check with the MS Society or Association and see about a referral. Hold the neuro to running through the revised McDonald Criteria if you suspect MS. The answers are coming.

 
Old 02-19-2011, 09:42 AM   #13
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Re: Please help me..

Quote:
Originally Posted by MSJayhawk View Post
Pollie, Sorry to hear of your continuing travails. What kind of neurologist have you seen? As to the lumps under your arms, is the swelling lymph nodes? Are you having any infections ongoing? Recent injuries? When my lymph nodes have swollen, it has been tied to an infection. An oncologist should be consulted if you have a family history of cancer.

Perhaps you need to find a new neurologist to start the process over. Fresh eyes can often bring resolutions. If the new neuro gives you the same diagnosis as the one you were provided, then that is what you need to move forward in your battle.

Are you limited to medical care in Nova Scotia only? Check with the MS Society or Association and see about a referral. Hold the neuro to running through the revised McDonald Criteria if you suspect MS. The answers are coming.

 
Old 02-19-2011, 09:52 AM   #14
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Unhappy Re: Please help me..

Thank you so much for replying to me. I am assuming the lumps were an infection. The Dr. didn't do any tests otherwise. The lumps have gone down but I still remain quite swollen

I seen an Environmental specialist who diagnosed me with Chronic Fatigue and Multiple Chemical Sensitivities. However, he was quite concerned with the myoclonus which is not related to the CFS. The problem is that the tremors/spasms usually get worse when I am required to use strength or walk after sitting in an upfront position. I feel like my hands and feet are on fire at times..such intense heat. They have taken my Driver's license because the tremors get so bad at times. So frustrated

I am scheduled to see another Neurologist and I am hoping he will give me some clarity or at least do some tests. Any suggestions as to what I should be asking him?

 
Old 02-19-2011, 10:16 AM   #15
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Re: Please help me..

The neuro should be specializing in MS. CFS is difficult to diagnose too. My cousin endured it for many years. He finally grew out of it enough to get back on track and live his life again.

Read about the revised McDonald Criteria and bring a copy with you. Hold the neuro accountable to run all of the criteria. The national MS Society has a PDF you can ******** and print. The Cleveland Clinic and other web sites also have PDF and Word formats you can ********.

Lymph nodes can take time to shrink depending on what was deposited and how long it takes for your body to eliminate. Have you had a mammography? It would seem that your family has a genetic factor that places you at higher risk and you should be tested.

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