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.
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.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
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.
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
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.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
The Following User Says Thank You to MSJayhawk For This Useful Post: PKinKS (11-20-2012)
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.
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!!
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.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
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
__________________
RRMS- dx 05
The Following User Says Thank You to MSNik For This Useful Post: PKinKS (11-20-2012)
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
The following user gives a hug of support to PKinKS: Whimpurr (11-24-2012)
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.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
The Following User Says Thank You to MSJayhawk For This Useful Post: PKinKS (11-20-2012)
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?
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.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
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?
"What is VEP? They talked about doing some kind of nerve conductor test."
Hi. Jayhawk answered your question about the VEP. I wanted to address the next part "some kind of nerve conductor test". I also had this done. When a limb is numb it could be caused by a local issue and problem with the local nerves. My right foot and hand were numb so they did the nerve conduction study on my hand to rule out carpal tunnel. They basicly touch your nerves with an electric impulse hooked to a machine that will make your nerves react. They measure the amount of time that takes (real medical jargon here-ha). Based on those results they can tell if it is local or from some other cause, neurological.
The test was not pleasant, the smaller nerves in my fingers didn't matter but when they go to the bigger nerves that make the whole hand react, and the main one that makes the whole arm react, those were like hitting your funny bone in the exact wrong spot. So not terrible, just irritating and made my arm feel even more "funny" or numb than before which went away within a few minutes.
Not sure if you are a knowledge junky but I like to know details so thats my experience. Because my hand and foot went numb at the same time and got worse together I only had the hand done, which was normal, and was told there was no reason to do the foot.
I pray you find answers and peace fast
Last edited by raden; 11-20-2012 at 02:27 PM.
Reason: typo
alot of the things that were tested up front were to rule out other problems. blood tests for vitamin, thyroid, hormone levels. those were all done with one set of blood work. i had the nerve conduction test to rule out local issue for numb limbs, i see it that you rule out everything local or individual problems that could cause some of these symptoms. i also had alot of eye pain so I did do the VEP test. it doesn't hurt, did not have to have a dr referrel and only cost $140 without insurance (although he discounted 50% because I paid that day- so $70). The test does help determine if there is a neurological problem even if one isn't seen on mri yet.
i can't remember if you said you are seeing an MS specialist. that is highly preached on this board, and for good reason, i found, because my first radiology report from my 1st mri stated normal, clean. in fact the ms neuro said he did not agree and i had several spots and one lesion...
i have not had any treatment for symptoms, but didn't ask either. i just wanted to be a clean blank slate and prayed to pinpoint the problem fast. if you have already seen a neuro you have come a long way... you can do this! i hope you find answers soon.
If you are early in your MS, it can be hard to diagnose and for some it is hard due to how their body handles the MS.
At the various stages of MS, the diagnosis is difficult because the process is one of elimination. Some MSers have been treated for symptoms for years without a diagnosis. I met an older woman who had had MS for at least 35 years. Her doctors had missed things over the years and she had ignored other symptoms. Once her kids had grown and departed the home did she finally start getting the pieces put together. Had her doctors put all their notes and exams together, they might have seen the problem. Many doctors might never see an MSer and can simply lack the insight to suspect MS or to refer a patient to an MS Specialist. Small, seemingly unimportant issues can be easily dismissed and when those problems "disappear" and the patient returns to "normal" the doctor and patient may simply forget about it.
Now, to get DMD's prescribed to you for MS, I do not think any doctor would do that without being accused of malpractice. There are many meds available for treating the various symptoms, but absent a diagnosis or evidence of a known cause, I do not think a doctor would prescribe a med; if they did, I would doubt their veracity.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Thank you for encouarging words spharden and MSJayhawk. All the people around me don't understand me at all. I act like I am lazy, but I actually just so very tired. I was tryi g to peel potatoes last night and kept stopping the peeler. I'm like.... What is this? I also woke up this morning with headache behind my left eye. I tried to put my contacts in and realized this isn't going to work. My left eye just feels weird today. I'm also in bed, not sure if its because I am depressed, fatigue, anxiety? But I can't think straight anyways. I know I may not have any answers for a while and MS might not even be what is happening up me, but it sure is nice chatting with people that can relate.
Can anyone explain to me about twinges in the leg? My leg will start twinging and nothing I can do to stop it.
Happy Thanksgiving tomorrow. As I lay here in bed I want yo say thank you for my life, for my kids, my home, and food to eat, yo the doctors they are trying to help me and to my husband (bless his heart, if he can take much more of me) and thank you for the angels Gid sends us when we need a friend....even when it's someone we don't know. ��
Patti
The following user gives a hug of support to PKinKS: Whimpurr (11-24-2012)
Another welcome to you and thanks for the new thread.
). My neuro told me that ALS was screened as a priority.
Re: MS? Looking for some insight and help. 
