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Confused and Scared
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Questions137 posted:
I have so manmy questions, I don't know where to start. I have had MS symptoms for some time now, but never pinpointed them until recently. I have a pinched nerve in my neck (C5&6) as well as a compressed spine (C7&8). I contributed my erratic symptoms to these diagnosis; however, doctorS have mentioned MS several times. I have had MRI's, nerve blocks, EMG's, etc. My vision that was 20/20 two years ago has become blury and changing needs of new glasses. I have lost feeling in my left side only for it to return and jump to my right side. I have also had nightmares (since childhhod) of not being able to walk. I am fatigued towards the end of every day. I get headaches, tingling and numbness in extremities, as well as a major loss of concentration. The recent MRI shows 5 or 6 undiagnosed spots on my brain. I went for blood tests again yesterday but have not been able to figure out what the blood test will show. Does anyone know?
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hackwriter responded:
Hi,

If these blood tests are being run as part of the diagnosis process, they are to rule out other causes that share similar symptoms as MS, such as Lyme disease. There are many, many diseases with like symptoms, and this is just one reason why MS is hard to diagnose. There is no blood test that will show the presence of MS, however.

If you are curious about the various reasons why your neuro would run blood tests, a call to their office should clear things up for you. It's a good idea to ask lots of questions, especially when things are so new and overwhelming. Your doctor is working for you, after all, so he/she shouldn't mind being asked.

Do let us know what you learn, and do feel free to share your thoughts and feelings.

Kim
 
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Questions137 responded:
Can anyone offer some input?
 
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Questions137 replied to hackwriter's response:
Thank you Kim. The other day when I was at his office, I was very upset (crying) about the pains in my body and that he had not communicated with the Neurosurgeon I was previously seeing for my pinched nerve and compressed spine. I felt he was not doing his job. Perhaps my emotional state did not help matters. I did not ask many questions, other than what my MRI showed. He verified that there are 6 spots on my brain, and stated that I would need to have another MRI done in October to see if the spots change in any way.

As a nurse, I have been trying to put the pieces together with all the things that have been changing in my body over the last few years; (vision, sharp pains, spastic movements, loss of balance, concentration, weakness and fatigue, etc.) Yesterday, I made som really stupid mistakes at work. I don't know what else to think. I guess I want a diagnosis (good or bad) as soon as possible, so I know what to expect (or not). I have always been an optimistic person, but somehow I feel that my symptoms which have been growing over the last few years are leading to an MS diagnosis. It would make complete sense.

I will keep you posted as I know more. Thank you so much for your response.
 
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findacure1 responded:
Hello Questions137,
I have had MS for a few years now. I am sure I could have been diagnosed sooner if I new what to ask the Doctors but who knows? I went to several Dr.s in the Cincinnati area and the really only definite way to get an absolute verdict is by a spinal tap. Yeah........it sucks. But at least then you will know! All the things you are going through that you listed, tingling, numbness, fatigue, feeling like it's 11pm when it's 2pm.etc.. Stress and heat ...........wipes my rear end out. It sucks, it's scary...........But it will feel better knowing. It's not the best thing in the world, but it is far from the worst. Go ask your Dr. for a spinal tap. Let me know how it goes. Good Luck, God Bless. Warmest regards, Steve Sigourney. stevesigourney@yahoo.com
 
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sm5840 replied to Questions137's response:
In Dec, I had a balance issue and ended up in the hospital for 3days. In Feb, after several blood tests, MRI: head and cervical area, a extreme balance test, CT scans...etc;the excuse was to "rule" out several different illness's or issues, a spinal tap was performed and the dx of MS was made. There are other symptoms and signs of MS, but as several others have written, many illnesses have the same type of symptoms.
I was told, after the Spinal Tap, that I had MS. I questioned why go thru the expense of all the other tests if a Spinal Tap would have told me what I needed to know. Ruling out other things seemed to be more important to the doctors.
When it comes to the MRI...I was told that I had white spots that were leaning their decisions towards MS, but I had to have all the other tests too. Frustration was my constant companion.
You are not alone. Good luck in trying to get some answers!
 
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Questions137 responded:
I received the lab results done last week and the doctor has said it has ruled out Cancer markers, but not MS. He has said to just wait until October for a second MRI to see if the spots change or if any new ones appear. Is this common practice for diagnosing MS???? I am in a constant stage of fear despite my trying to be optimistic and not see too far into all the symptoms I am having. But what else could it be?

My husband told me last night that I have muscle spasms in my sleep and that my body jerks. He thought at first that I was just having bad dreams, but now he is rethinking it all. He never mentioned it before, as he did not want to frighten me or embarass me, God love him.

Has anytone else had muscle spasms and jerking?

Thats for being here, by the way.
 
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hackwriter replied to Questions137's response:
Spasms, rigidity, and cramping are common MS symptoms. Your doctor can prescribe muscle relaxers for that. I take Baclofen and Zanaflex, it helps a lot.

As far as your doc taking another MRI in October to check for changes as part of your diagnostic process, I don't know what to say about that. As sm5840 wrote above, the spinal tap is often the deciding test. It was for me, too.

Docs are supposed to follow the McDonald criteria to diagnose MS, which basically means at least three lesions in brain or spine, a spinal tap positive for o-bands, and at least two separate flare-ups.

You've got to have a talk with your doctor and find out why he's so focused on changes in your lesion load. That's only part of the picture.

Kim
 
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Questions137 replied to hackwriter's response:
Hi Kim,
I went back to my doctor, again this past week. He has ordered a Spinal Tap for early (6:00 a.m.) Monday morning. I am very nervous and apprehensive, but want to know what the heck is going on with me. This constant weakness in my muscles and loss of balance and concentration are having an effect on my work. I have not been able to get a good nights sleep since this whole thing started leaning towards MS. How long does it take to get the results back from a spinal tap? I was so shocked the doc ordered it, I forgot to ask when we would know the results. There goes my brain again.

Truly sleepless in Seattle,
Bobbie
 
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mmthlvr replied to Questions137's response:
1st don't let the spinal tap wig you out, you have enough on your mind. I had 2 & never had any problems. Make sure you get up & start drinking lots of water, I also drank coffee. Drink untill it's coming out your ears. Next, make sure you have water handy after the tap because you may have a headache when you first sit up. Mine went away in a few minutes after drinking the water.
Last but not least, rest the rest of the day. By the way, mine was negative but my lesions & symptoms gave me my diag last June. It took less then a week to get my results.

I too had radical sleep jerks, not the normal falling asleep kind. I had the numbness, tingling, weird sensations & suddenly having trouble doing a job I had done for over 10 years. My husband always finds the good out of everything though. I will sometimes kiss him goodbye 2-3 times before I leave for work since my short term memory sucks:).
Good luck Monday & don't forget the water!!!! Let us know how it goes.
Hugs,
Tammy
 
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Questions137 replied to mmthlvr's response:
Hi Tammy,

The spinal tap went much better than I wigged myself out to think. LOL. The worst part was the anxiety leading up to it, waiting for the pain to start, only to find that the sensation of extreme pressure was the worst part. The doctore used an XRay machine so he was able to know exactly where the needle was going in; thereby alleviating multiple insertions. It took no more than 30 minutes. I rested all day yesterday, drank plenty of water, (thank you ;) ) and was lucky enough not to experience any major spinal headaches. The doctor showed me what my spinal fluid looked like. It reminded me of clear fingernail polish...same consistency too. I asked if it being clear meant I was clear of any MS diagnosis and he said Unfortunately, No. I will try to stay optimistic until I know of my diagnosis later this week.

Although caffiene can dehydrate the body, it was my reprieve after the spinal tap. ;)

I will keep you updated as I know more this week. Thanks for being here.
 
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mmthlvr replied to Questions137's response:
I'm glad it went well. I wish I would have had it done the xray machine the 1st time. When I had my first spinal I wnet through 3 dr's & they spent over an hour trying to get in. 2nd time with machine & I was out in a flash.

I think the worry & anxiety is worse then the test. Please make sure you let me know what the results are, remember MS is not the end of the world.
Hugs,
Tammy
 
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rikilynn1982 replied to Questions137's response:
the color of the spinal fluid is not an indicator of MS, but it being clear is a good sign that there is no other infection going on. To diagnose MS using spinal fluid they spread it on a special type of paper and look for oligoclonal bands which indicate MS. Hope you get some answers and I'm glad you didn't have any problems post LP.


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