MS or something else?!?

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Cincinnati1973
New Member


Date Joined Jun 2012
Total Posts : 3
   Posted 6/5/2012 9:05 PM (GMT -6)   
Hello all....I have a question for those who have been diagnosed with MS.  I'm male, 39 years old and live in Ohio.  For the past 6 weeks or so, I have been dealing with some strange symptoms that are totally new to me.  I have been relatively healthy (only hospital stay was getting tonscils removed in my early 20's).  The list includes: constant burning sensation in lower back that at times will radiate up to my neck, stinging or tingling sensation in both my arms and legs and an occasional sharp pain in a joint such as a shoulder or wrist.  I would swear that the stinging/tingling feelings are moving around my body, depending what I happen to be doing at the time.  Fatigue is also apparent, but I keep explaining that to myself because I haven't had a break from these symptoms for some time now and it's wearing on me.  I also seem to a a very slight shakiness to my hands lately....once again, I try to explain it away because of what I'm experiencing.  I have no insurance with my employer but finally broke down and went to the ER this past weekend.  After explaining my symptoms to the doc, he tells me this sounds like MS to him.  He wouldn't run any tests, other than check my glucose for diabetes, which was normal, but simply gave me a referral to the neuroligical department at UC medical.  He tells me there is no guarantee they will give me the MRI, but it's all I have hope for at this point.  Any input would be appreciated, thanks!

Tranquilrain
Regular Member


Date Joined May 2012
Total Posts : 48
   Posted 6/6/2012 4:11 PM (GMT -6)   
I would have to agree with the ER Dr. A lot of the symptoms you stated, I have. If I were you, I would find out asap, the Neuro. would want to rule that out first so, I'm thinking 9/10 chances, an MRI or an Lumber Puncture. I got DX with just an MRI, I also live in Ohio. I was told that more people have MS here in this state, than any other state?! I don't know if that is true or not, but I did here it from a DR.'s report from Kent State, where my "brother", (childhood best friend) is going for nursing. He shared the article with me. I would get checked out just to rule it out.

Cincinnati1973
New Member


Date Joined Jun 2012
Total Posts : 3
   Posted 6/26/2012 8:44 PM (GMT -6)   
Can anyone tell me how long their symptoms typically last....days, weeks, months? The symptoms I described above have now been with me for about 2 months and counting. Hopefully a call will come in soon from UC...keeping my fingers crossed!!

Thanks

Meg444
New Member


Date Joined Jun 2012
Total Posts : 2
   Posted 6/30/2012 4:25 PM (GMT -6)   
I just had my MRI done on Wednesday. It has been unbelievably hard to get anyone to take me serious. I have been battling with these doctors since August and still do not have a diagnosis. They said I should have the results of the MRI in 24 hours but on Thursday no one called.. on Friday I called my neuro and he was out of town for the rest of this coming week and didn't have the results from the radiologist yet. So I called the Imaging Center and they said I could come pick up a copy of the report with a picture ID but when I got there they refused to release it to me stating the doc hadn't signed off on it yet and wanted to review it more. My neuro thinks I am nuts and wont take me serious. I am not an anxious person at all. But my symptoms have been a constant burning in my left ear, slight tremors in my hands.. especially after I workout they get severe. I stay tired, as a matter of fact.. I slept all day today. I am a runner so this fatigue is not normal for me. I get muscle spasms out of the blue, in my back and especially my feet. There are other symptoms too like the sharp pains that are random. MY arm is now hurting from the contrast they used and I can't straighten it.. it seems a little puffy. What were some of ya'lls symptoms before DX? I will post what my results are for the MRI as soon as the doctors "allow" me to have them. My doctor told me before the MRI that most likely it will come out fine, that I am fine.. and that we can treat the ear as simple isolated nerve damage with Topamax. I insisted on the MRI.

I have had episodes of almost passing out, I cannot tolerate being on boats at all now because I get extremely ill due to vertigo or some such. My eye twitches a lot, I have restless legs and sleep with stacks of pillows between my knees. My hands and arms go numb sometimes, had to have new glasses because vision is failing. Due to nerve damage in left ear I have lost 5 percent hearing, right ear I had surgery on because my ear drum deteriorated due to infections so I have a 40 percent loss in that ear.. Most due to nerve damage as I now have a new eardrum and recovered some hearing so loss is down to 25 percent now. I am only 35. I have four children and I have noticed some of these symptoms since a young age.. others are just developing.. but they come and go.. They will last about two or three months and make life miserable and then just fade away and I feel fine for a while. I had flu like symptoms in January twice very severe and entire body pain where I was crying.. went to the doc and he treated me with steroids even though it was NOT the flu according to him. I had strep throat twice in February, the first was diagnosed the second time came back negative but still treated as such. They were actually baffled. My immune system is weak. I get sick way too much and yet.. as much money as I have given to the docs.. still nothing. Blood work is fine, vitamin D deficiency so I corrected that. B12 is good. I eat healthy and I work out regular. I am just confused. I suppose I just need to learn to live with it until something happens. Like I said, not anxious at all. Just want an answer. To the original poster of this forum.. keep going to the doctor until they take you serious. It may take you a while.. and you have to be your own advocate. Keep us updated.

Post Edited (Meg444) : 6/30/2012 5:12:33 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3127
   Posted 6/30/2012 11:14 PM (GMT -6)   
Hang in there. I hope you get answers soon. Have you ever considered Lyme disease? With MS, the immune system is actually over active. It's an auto-immune disorder. I am extremely healthy other than MS. I rarely get colds or the flu. I am a 5th grade teacher and I am exposed to pathogens constantly. I do feel that if you suspect MS, you need to see an MS specialist. I was diagnosed by a general neuro but received a second opinion and medical care from a neurologist who specializes in MS.

Do check into Lyme disease. That can wreak havoc on your immune system and share many of the same symptoms. Best of luck to you. Let us know how that MRI comes out.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2042
   Posted 7/1/2012 8:12 AM (GMT -6)   
Hi Cincinnati, I am usually on the lyme board and check in here often as I am often curious as to why so many are misdiagnosed with MS when they have lyme or vice versa. I am ask that question quite often and would love to understand both diseases better.

Please do get checked for lyme. It is the fastest growing infectious disease in the country. I too had the symptoms you have and have lesions on my brain from lyme. Neuro, infectious disease, GP, hospital ER - none were very informed or helpful when it came to lyme so please RESEARCH, RESEARCH, RESEARCH.

Hope you feel better soon.
Co-Moderator
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: neurontin, cymbalta Prior meds: roxy, bactrim, doryx, amantadine, amox, minocycline, tetracy. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes, grapefruit seed ext.

Cincinnati1973
New Member


Date Joined Jun 2012
Total Posts : 3
   Posted 7/1/2012 8:33 PM (GMT -6)   
Thanks to all for the recent responses.  I still would like to know from those who have confirmed their MS....is how long do your symptoms typically last?  The newest "things" going on in my world is the feeling that my head is wobbling around.  It seems to happen when I'm sitting still or when I lay down for bed at night.  As stupid as this sounds...I'm still not sure if my head is moving or just feels like it is.  The tremble in my left hand seems to have gotten a bit worse as well....pinky finger now sometimes shakes side to side.  I missed the call from UC this past Wednesday and they haven't called back, grrrrrr.  Looks like I'm going to have to chase them down tomorrow at work. 
 
Michael

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3127
   Posted 7/1/2012 8:59 PM (GMT -6)   
Hi Michael,

Sorry. I didn't mean to ignore you. Most of my symptoms seem to be permanent. I have chronic vertigo and balance issues. Those were my presenting symptoms. I also have numbness in both feet. I have that since I flared in April '07. I did develop optic neuritis. Those symptoms from that lasted 5 months. All my other symptoms seemed to be permanent.

Many symptoms that one would develop from having MS are permanent. They call those "residual symptoms". It really depends upon how much brain/spinal cord tissue has been damaged.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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