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Old 11-12-2012, 12:00 PM   #1
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MS? Looking for some insight and help.

Hello

I am new here and I will try and make this short as I can but 4 months ago I was running a 5k and didn't feel well that morning to go run it but I did anyways, I had been feeling fatigued lately. About half way through running my left foot became completely numb and it moved up my leg. Weird, that has never happened to me before.
Things got better and about a month later I started to get hit with waves of fatigue and very bad headaches in the back of my head and in my neck and my left eye area ached a little . Then I started to get weird sensations in my left foot and leg... very tingly, buzzing like sensations.
I went to see my PCP and he made me appt to see a neurologist and they did a MRI of my brain and of the cervical spine. My brain MRI came back fine and the one of my cervical spine looked ok except for some bone spurs and possibly some narrowing of the spinal cord. They said, maybe problem there... but they aren't convinced that is my problem.

After that, I got some better again, but just over these past two weeks I have been hit really hard with fatigued, pain in my neck and my back kidney area... almost like I have been punched or squeezed. The tingly, buzzing sensations in my left foot and leg are intense at times and I now I can't walk very well. I can't even take a shower, the water hitting my legs feels horrible! I feel very weak on my left side. I seem to be in a fog, can't think anymore and not sure if it's from anxiety or what?

I see a hematologist tomorrow and for reasons I don't know why? And I am getting MRI's done of the Thoracic and lumbar spine on Thurs.
I guess if my MRI's come back clean they will do a lumbar puncture and a nerve conductor test.
,
All I know at this point is that I don't feel like the same person I used to be just 4 months ago. I feel like I am becoming paralyzed and my mental state is fading. I am a mom to 3 kids. 2 of them are young... only 9 and 11. I am 45 years old and praying for some answers. I can barely take care of myself sometimes.

Thank you for anyone that reads this and that can reply. My thoughts are with so many that are struggling just as I am.

Patti

 
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Old 11-12-2012, 12:30 PM   #2
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Re: MS? Looking for some insight and help.

Another welcome to you and thanks for the new thread.

As you are near Wichita, you are close to neurologists and MS Specialists. If you are presenting with symptoms such as you have written, ALS and a large number of other diseases are ruled in or out early on. Tests for ALS are specific and due to its aggressive nature, patients are quickly diagnosed and begin treatment ASAP. Early in my MS walk I asked the same question because Dr. Funk and Wagnall lumped them together (the age before Dr. Internet ). My neuro told me that ALS was screened as a priority.

My youngest was 3 and oldest 11 when I was diagnosed. My youngest only knows me as disabled and my oldest quickly assumed some of the chores to help me. They are now 13 and 22 and both in college. I chaperone the youngest on campus. being burdened with MS does not change your familial position. Just being in your children's lives serves as an important anchor regardless of your physical ability. I cannot participate in everything they do, but I am still Dad. You will remain "Mom" until you add the additional title of "Grandma". MS does not end your life. You can still have a long and blessed life.
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Old 11-12-2012, 12:45 PM   #3
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Re: MS? Looking for some insight and help.

Hi again MSJayhawk and thank you for your response to my new thread. I guess none of my Dr's have even said the word ALS to me, but they have said on several occasions they are trying to rule out MS. Do they not say ALS because they know they will send people home in pure panic? Maybe, because I would probably be one of those, but I just have to put that out of my mind... I can't go there because it doesn't help me at all. My PCP did tell me that sometimes MS is hard to diagnose if it is early on.
I know they are looking farther down my spine to see if they can find anything there and the Lumbar puncture and nerve conductor test might give some insight too.

Thank you and I am sure you are a great dad and my kids have been very helpful... and you are right, I am mom no matter what and will always be there for them. I missed out on some activities already... Roller Skating, and the Pumpkin Patch Corn Maze this year. But, they knew I wanted to go and they don't hold it against me... I hold it against myself.

So cool you went to KU! My oldest son is a senior this year and would love to go to KU... we are such big fans, but I hate to say that we are also KSU fans too because we have so many friends that have attended or their kids are attended these fines colleges and so I love them both!

Thank you for your help and helping me try to ease my mind.

Patti

 
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Old 11-12-2012, 12:46 PM   #4
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Smile Re: MS? Looking for some insight and help.

Quote:
Originally Posted by PKinKS View Post
Hello

I am new here and I will try and make this short as I can but 4 months ago I was running a 5k and didn't feel well that morning to go run it but I did anyways, I had been feeling fatigued lately. About half way through running my left foot became completely numb and it moved up my leg. Weird, that has never happened to me before.
Things got better and about a month later I started to get hit with waves of fatigue and very bad headaches in the back of my head and in my neck and my left eye area ached a little . Then I started to get weird sensations in my left foot and leg... very tingly, buzzing like sensations.
I went to see my PCP and he made me appt to see a neurologist and they did a MRI of my brain and of the cervical spine. My brain MRI came back fine and the one of my cervical spine looked ok except for some bone spurs and possibly some narrowing of the spinal cord. They said, maybe problem there... but they aren't convinced that is my problem.

After that, I got some better again, but just over these past two weeks I have been hit really hard with fatigued, pain in my neck and my back kidney area... almost like I have been punched or squeezed. The tingly, buzzing sensations in my left foot and leg are intense at times and I now I can't walk very well. I can't even take a shower, the water hitting my legs feels horrible! I feel very weak on my left side. I seem to be in a fog, can't think anymore and not sure if it's from anxiety or what?

I see a hematologist tomorrow and for reasons I don't know why? And I am getting MRI's done of the Thoracic and lumbar spine on Thurs.
I guess if my MRI's come back clean they will do a lumbar puncture and a nerve conductor test.
,
All I know at this point is that I don't feel like the same person I used to be just 4 months ago. I feel like I am becoming paralyzed and my mental state is fading. I am a mom to 3 kids. 2 of them are young... only 9 and 11. I am 45 years old and praying for some answers. I can barely take care of myself sometimes.

Thank you for anyone that reads this and that can reply. My thoughts are with so many that are struggling just as I am.

Patti
Hello I had alot of your symptoms and then Shingles broke out..after my test they Ruled Fibromyalgia ..It is terrible I also have one leg from foot to hip intense pins and needles that came and go now 3 yrs later it never went away.I am 43 and devastated.I had to apply for SSDI and after 2 yrs just had a hearing .Fighting for benefits really makes it more stressful.I have moderate narrowing,but my doc's said it would not cause my symptoms..so sorry Take care and good luck

 
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Old 11-12-2012, 01:01 PM   #5
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Re: MS? Looking for some insight and help.

Your PCP is correct that early on the diagnosis can be difficult, BUT it is not impossible. ALS has specific testing so that patients do not have to be put through the wringer waiting for answers. Some people will panic even when they are told things they simply do not wish to hear. With MS, post-diagnosis can often be followed by grief and self-pity. Pity parties should be avoided.

You should know that an MRI can come back "normal" early in MS. To provide the best reading, please have an MS Specialist read your MRI. An LP is usually one of the final tools. Please note that neither the MRI or the LP are specific tests for MS. There are no specific tests for MS. Rather, the diagnosis is a process of eliminating all of the diseases which can present like MS. After all possibilities are eliminated, MS is the remaining disease. Also note that the LP can appear normal (negative) for 15% of MSers who have had an LP (after 35 years with MS, I still have a negative LP). The LP is not necessary, but it is recommended. You should also look at the VEP (visual evoked potential) which is a highly sensitive test and can provide the neuro with evidence if you have a neurological problem.

KU or KSU are both good and both have their areas of specialty. Unfortunately, we cannot afford for our boys to go to KU because they no longer offer the flat tuition they once did. Still, they do have good programs.
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Old 11-12-2012, 01:02 PM   #6
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Re: MS? Looking for some insight and help.

Hi fibrowendy - Oh man, all of that just sounds horrible and I can't imagine getting shingles on top of that. I have never had shingles but people that I do know tell me it's horrible. I do have one friend that has Fibromyalgia, and I may ask her some questions about how her symptoms started. May I ask how they were able to diagnose you with Fibromyalgia?
So sorry and prayers to you that you can get on SSDI soon. I have heard the process is very long and I wish it wasn't. Please hang in there and keep us updated.

Patti

 
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Old 11-19-2012, 07:52 AM   #7
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Re: MS? Looking for some insight and help.

Hello MSJayhawk, I am getting a lumbar puncture done today and feeling pretty nervous about it but my neurologist wouldn't see me again until I had it done. so that took care of that I guess?
I had some pretty rough days this past week. Fatigue was horrible and I my left leg would not work, the tingling sensation was intense and then I started to have back low back pain and my left arm all the way to my thumb felt like it was burning. I never knew that I could get be that tired. And the anxiety was at a all time high because all I can think is what the hell is happening to me? This crazy unbalanced, dizzy, tingling, pain and fatigue is too much!

But, just over the past two days I have finally started coming around and feeling some better. It is whatever was attacking me is starting to leave and all I can do is pray that it stays away. I don't want to feel like that ever again!!
I'm not sure what kind of results I will get from the lumbar puncture but obviously my neuro wants it done and even though I really don't want to get it done in a way I am ready to just get it over with.

Also, even though I am feeling better, my left leg still feels weak and a little tingly... but any relief is very welcome.

That is so cool that you have been in Kansas for so long and went to KU and live on the family homestead. I have been in Kansas since 199, moved here from Colorado and I wouldn't want to live anyplace else which a lot of people think I am crazy but Kansas has a way of growing on you!!

Thank you for listening to me!!

Patti

 
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Old 11-19-2012, 12:29 PM   #8
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Re: MS? Looking for some insight and help.

Sorry for the delayed reply as I was busy helping a Chinese student here with her English.

If you follow the instructions for post LP recovery, you should do fine. If you do get a post LP headache, you should get a blood patch as soon as you can. Stay caffeinated and remain lying down or reclined and off your feet. Much of your trepidation is a matter of the thought of the LP.

Unless there is something major, you will be unlikely to have a result until your appointment. Just remember, whatever the LP result, it is not an MS Specific test. If your doctor is sitting on the fence and basing a diagnosis on the result, I would encourage you to find another MS Specialist or at the very least, a second opinion.

Having been on over 49 countries around the world, Kansas is home, but I can make my home pretty much any where. There are some nice spots in Colorado which would be lovely. I am glad that you have adjusted to Kansas.
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Old 11-20-2012, 03:14 AM   #9
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Re: MS? Looking for some insight and help.

I'm not sure what kind of results I will get from the lumbar puncture but obviously my neuro wants it done and even though I really don't want to get it done in a way I am ready to just get it over with.

Pkinks,
How did the lumbar puncture go? The reason this was ordered is to rule out other things which mimic MS. Brain infections, certain diseases which show up in the spinal fluid, these can only be found thru a LP... its not a specific test for MS; however, MS doesnt have a specific test, so the doctors must rule out everything else first.

I hope it went well and that you can rest now and continue to feel better.
Try to have a happy holiday and put it out of your mind for the time being...

Nikki
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Old 11-20-2012, 12:52 PM   #10
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Re: MS? Looking for some insight and help.

Hi Nikki and MSJayhawk - the lumbar puncture went fine. I had to get poked twice, but oh well. It took a long time for the fluid to come out so we were there for a very long time. I have a back ache and a neck ache today and a sick daughter home today.
I guess it will take some time to get the results back with the fluid? It also sounds like even if my CSF is positive, I have a clean MRI so other than my symptoms I won't have much to go off of. I am getting another MRI next week of the Thoracic spine. I just had one done but they didn't use contrast, my neuro says it has to have contrast. I'm not sure what they are looking for in my Thoracic spine?
I'm just so tired, getting depressed too. Trying so hard to be patient. My kids and husband just don't even know what to do with me anymore.

Patti

 
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Old 11-20-2012, 01:03 PM   #11
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Re: MS? Looking for some insight and help.

I am glad you made it through. My CSF has remained "normal" throughout my MS. I had an LP in 1982 and again in 2002. Neither was positive.

Have they run a VEP on you? When the scanned me in 2002 they could find no active lesions, but the VEP indicated otherwise. When they re-scanned to include my thoracic spine, they found active lesions on the T-spine.

Because the MRI images can change, if there is no diagnosis forthcoming, then another MRI would likely follow in 2-6 months. Remember, your doctor is pulling straws out of the pile of hay looking for the proverbial needle. If all the straws are pulled away, the needle is visible. You may have MS, but you really will not know until all of the possibilities are eliminated. If your neuro is lacking in the MS experience department, I would encourage a second opinion. Perhaps he can contact my neuro, Dr. Sharon Lynch at KUMC for a consult.

Depression is an unfortunate bedfellow of limbo land. You need to be aware and know that sometimes intervention is needed. Hopefully a resolution will arrive soon and you can get out of limbo land and start living your life.

I hope your daughter is better.
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Old 11-20-2012, 01:16 PM   #12
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Re: MS? Looking for some insight and help.

What is VEP? They talked about doing some kind of nerve conductor test. I will for sure take down your neuro's name and may make an appt with her? I am open to a 2nd opinion. They told me that Dr Odenheimer is a good MS doctor, but who knows? this is a first for me, so I don't know?

Patti

 
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Old 11-20-2012, 01:21 PM   #13
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Re: MS? Looking for some insight and help.

The VEP is the Visual Evoked Potential. They "glue" electrodes to your scalp and you watch a moving pattern one eye at a time while focusing on the dot at the center of the monitor. The test is painless and quite sensitive. It is also non-invasive.

I would stick with your doctor throughout the diagnostic process. If he cannot ascertain what your problem is, then ask for a second opinion. Dr. Lynch has a long wait time at KUMC, but a consult or a referral might get you in without a long wait.
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Old 11-20-2012, 02:07 PM   #14
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Re: MS? Looking for some insight and help.

What is VEP? They talked about doing some kind of nerve conductor test. I will for sure take down your neuro's name and may make an appt with her? I am open to a 2nd opinion. They told me that Dr Odenheimer is a good MS doctor, but who knows? this is a first for me, so I don't know?

Patti

 
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Old 11-20-2012, 02:09 PM   #15
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Re: MS? Looking for some insight and help.

Sorry, I didn't mean to post that twice. Opps

 
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