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    Old 07-27-2012, 05:28 AM   #1
    MaddieC
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    Question Looking for advice

    I have been having burning sensations in legs, numbness/tingling in arms & legs, muscle twitches, charlie horses in thighs, muscle weakness, shooting pains in arms, legs, fingers for 8 months now. It all started last Nov when I got very ill. Was told had a viral infection turned into flu. Three days later could barely walk (took almost 2 months to regain normal walking) legs were numb, felt strained and weak (also in both arms from elbow to shoulder). Every time I catch a cold since it flares up & a different part of me gets affected with same symptoms. Have had 2 EMG's, hip & spine xrays, brain mri, spinal tap, and a ton of blood work done which has all come back normal. My doctor has me on 300mg gabapentin which I take 2 in the morning & 2 at night. It has helped make me be more of a funtionable person but just masks the problem. Neurologist said there is nothing neurologically wrong with me. Any suggestions or anyone going through similar symptoms that has any advise would be greatly appreciated.

     
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    Old 07-27-2012, 11:30 AM   #2
    nola
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    Re: Looking for advise

    MaddieC, I'm so sorry you are dealing with this. Your symptoms mirror mine almost exactly except for I did not have a virus or anything detectable that caused my symptoms and if I get a cold my symptoms do not increase. Are you continuing to do any blood work? I know you've had a lot done, like me, but I plan to actually redo some of the ones I had done because errors do exist with these tests and it would be good to compare them.

    Your post reminded me that the only thing that happened to me before my symptoms started up badly was that I'd had a bad tooth infection. At the time, I couldn't afford to have a root canal and didn't want to have it pulled, I waited too long and it became infected, then I felt really sick from it and got it pulled.

    I hope you can find some answers soon. Have you seen any other specialists besides your neurologist?

     
    Old 07-27-2012, 01:36 PM   #3
    MaddieC
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    Re: Looking for advise

    I have been seeing my family doctor (who prescribed the gap.) who did some of the prelim tests, 2 neurologists (first one wanted nothing to do with me). I see my family doctor in 2 weeks and am going to tell him I want refered to the Cleveland Clinic. My present neurologist wants to see me back in 3 months. I am curious about a couple things that did come back positive but my neuro didn't seem very concerned over & am hoping I do get retested for. One was a lupus test which was positive but only a 6 (0-5 is neg) but since something else in the blood that would confirm it came back fine. Other was (I can't remember which, but is something I want to go over w/ fam dr) either my b14 or b16 was really low & she wanted to see me get that back up. But didn't tell me how. It has been such a frustrating ordeal. Have heard alot of people tell me they've known someone with similar symptoms and went to Cleveland Clinic that finally got diagnosed but don't want hopes up too high, been let down to many times. But it's so nice to hear i am not alone. I almost started crying reading your reply. My heart goes out to you and I hope you get answers too!!

     
    Old 07-27-2012, 01:47 PM   #4
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    Re: Looking for advise

    MaddieC, I hope you'll get the help you need and especially a reliable diagnosis at the Cleveland Clinic. Does B16 have to do with your immune system? I think I remember reading about that. It would make sense if you have a lowered immune response. How's your B12? Everyone with neuro issues, and nerve issues in general, should take a little extra B12. You can't overdose on it and it helps a little at least.

    Good luck with all the rest of your retesting. That would worry me too about the lupus. I've had similar things happen with some of my tests where it showed I could have a blood infection but then other numbers from other factors ruled it out. It gets confusing and in the end we have to hope we know what our doctors are doing!

    Please check back in and let us know how you're doing and how everything is going. So many of us go through the same thing here and it's great to be able to talk to others who are experiencing similar issues.

     
    Old 07-28-2012, 03:57 AM   #5
    MaddieC
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    Re: Looking for advise

    My B12 was normal. I rented a couple books from the library on B14 & 16 because I don't know what either of them do for the body. Will let you know what each are when I start them.
    Thank you and I hope you find some answers soon too! I will keep you updated!!

     
    Old 07-28-2012, 03:59 AM   #6
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    Re: Looking for advise

    My B12 was normal. I rented a couple books from the library on B14 & 16 because I don't know what either of them do for the body. Will let you know what each are when I start them.
    Thank you and I hope you find some answers soon too! I will keep you updated!!

     
    Old 07-30-2012, 09:57 AM   #7
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    Re: Looking for advise

    It almost sounds like you started with a form of Gullian Bare disease. It can cause a person to lose function of their arms and legs. Now it sounds like you are dealing with neuropathy. The burning sensation, cramps, shooting pains and numbness and tingling all stack up like it. If you have SFN it will not show on an EMG.

    I myself started with pain at the bottoms of my feet, then numbness. The stabbing pains and burning came along later as I did not progress as quickly as you have.

    Yes the gabapentin just masks the pain and such but with SFN that's about as good as it gets. I am on Lyrica which is in the same family and a narcotic pain killer.

    A skin biopsy will show SFN if you have it, the only other option is a sural nerve biopsy but it is sorta invasive.

    I wish you luck getting to the Cleveland clinic.

     
    Old 07-30-2012, 08:05 PM   #8
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    Re: Looking for advise

    @ Tingles, thank you.
    I was tested for gullian barre but my protein levels in spinal fluid was normal. All the symptoms matched up so I was hopeful just for the sake of getting a diagnosis. My neuro had talked about doing a sural nerve biopsy but said it wouldn't do any good because I would be left with a numb spot at the area they took from and since she could find nothing neurologically wrong with me it wouldn't be worth it. She basically told me that I may have an undiscovered disease to which there is no known treatment or cure for and just deal with it, come back in 3 months.
    I have heard & did do some research on SFN and am definitely going to bring it up at my appointment in a couple weeks.

    Physical therapy has been suggested also for my muscle weakness. Have you had any and has it helped if so?

     
    Old 07-30-2012, 08:07 PM   #9
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    Re: Looking for advise

    I am so glad I stumbled upon this forum

    Last edited by MaddieC; 07-30-2012 at 08:15 PM.

     
    Old 07-31-2012, 03:09 PM   #10
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    Re: Looking for advise

    Hi there Maddie
    I was diagnosed with Peripheral Neuropathy a few years ago after they found out I had a B12 vitamin deficiency. I was tested in hospital by a Neurologist. I have semi-numb feet which burn a lot and I feel like I have small stones in my shoes when I walk. I have been reading up recently about Nerve Support formulas from various health food companies - dont know if they are any good but may be worth a try?
    Carol

     
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    Old 08-01-2012, 10:54 AM   #11
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    Re: Looking for advise

    Well, a sural nerve biopsy can show mylation and demylation of the nerves, helping to the diagnosis of SFN. I understand there is a skin biopsy that is less invasive now a days.

    As for physical therapy I can best recommend a Tai Chi class. Five years ago I was not able to finish a one hour class due to pain and weakness but now I do three hours twice a week in a class and then practice outside the class. It has been the best therapy recommend by my doctors.

    Weights and an exercise bicycle are also helpful for me.

    I wish you the best in receiving a diagnosis and cannot stress enough the benefits of Tai Chi.

    Thanks,

    Tingles

     
    Old 08-01-2012, 08:49 PM   #12
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    Re: Looking for advise

    Tingles, that's great that you find relief with exercise. I do as well. I think that if I didn't exercise, my pain and other symptoms would be worse. I love to fence (German longsword) and I haven't been able to do it for awhile. I just started building back up to it with solo practice at home before I rejoin my group and it has made me feel so much better.

    MaddieC, do you do any type of exercise, if you stick with it, it can really help.

    Quote:
    Originally Posted by tingles View Post
    Well, a sural nerve biopsy can show mylation and demylation of the nerves, helping to the diagnosis of SFN. I understand there is a skin biopsy that is less invasive now a days.

    As for physical therapy I can best recommend a Tai Chi class. Five years ago I was not able to finish a one hour class due to pain and weakness but now I do three hours twice a week in a class and then practice outside the class. It has been the best therapy recommend by my doctors.

    Weights and an exercise bicycle are also helpful for me.

    I wish you the best in receiving a diagnosis and cannot stress enough the benefits of Tai Chi.

    Thanks,

    Tingles

     
    Old 08-13-2012, 05:03 AM   #13
    MaddieC
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    Re: Looking for advise

    Thanks everyone. I do try to be as active as I was before this but it has been difficult. I have a very active 3 year old so I try my best to keep up with her and kinda use her as my "weights" if you will.

    This past friday I had a terrible flair up. I started feeling like I was coming down with a cold. Then my muscled started aching so bad I could hardly take it. My thighs began cramping & burning, shooting pains down my legs. And my arms from elbow to shoulder felt strained and across my upper back. Seven hours later I was finally comfortable enough to try to get some sleep. Now it has left my lower arms burning, top of hands tingling, and back of legs burning. I see my doctor today.

     
    Old 08-13-2012, 10:38 AM   #14
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    Re: Looking for advice

    I'm sorry to hear about your flare up, MaddieC, I had one too from Friday - Sunday very similar to what you described. I hope you feel better soon and have a nice doc visit.

     
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    Old 08-13-2012, 10:54 AM   #15
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    Re: Looking for advise

    Hang in there and realize that you are not alone in going through this. We all have our good days and bad days. On a good day you may just feel like recovering or get out and do things. On a bad day it is just easier to curl up and cry.

     
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