does this sound like MS? - Multiple Sclerosis Message Board

conni hutton · 01-04-2008, 10:18 AM

my first time posting so please bare with me. Im longing for answers and Ive been through alot of testing for the past 8 mtns the last 3 months my reg. physician thinks I could have ms. went to neuro she says we are trying to rule it out. meanwhile, im frustrated as alot of you are searching for answers. the list of test and results so far. mri "brian" showed spots with contrast did not show up as a lesion just spots the evoked test on eyes "ms protocol" results were "abnormal" on legs it was normal. I had a spinal tap so far it came back with high protein levels but neuro says not significant. even though on here if seen otherwise?? still waiting on the rest of spinal tap results has to come back from the mayo clinic.
my symptoms: on an off tingling in hands and feet at one time I had tingling in all my toes. some tingling in left leg on and off. tingling down one side of leftside arm only happened a couple of times. Ihave weakness in my hands dont have the strength anymore to open anything. I have contined burning in upper back on left side up the spine and sometimes in the shoulder area. sometimes there is some burning that goes on the right side of upper back at bra line this burning in the upper back never goes below the bra strap line. These symptoms along with blurred vision which I did have to go and get glasses have been happening for around 9 mths. Im on neurontin 300mg it does not take away these smyptoms. Ive lost alot of weight. I have also noticed one of my ribs on left side is not much larger and sticks out further than my right rib. have any of you expereince anything like these I know that the symptoms of ms are different in all of us but, I would still like your opinions. THanks ahead of time.

MSNik · 01-04-2008, 02:25 PM

Hi Conni. First of all, dont panic, okay? Although your symptoms are driving you crazy (it sounds) none of them are life threatening. To some extent, it does sound like MS, although some of the symtoms do not ring true with MS at all- such as "Ive lost alot of weight. I have also noticed one of my ribs on left side is not much larger and sticks out further than my right rib." Not MS related...
The MRI is probably the most significant test you have had done. And, just because nothing was showing up when you had it, doesnt mean that the lesions wont show up in the next 6 months or so. Did the Neuro talk about repeating it in the future? He should be....MRIs detect what is active or there, NOW, but things change in an instant. THey dont go away, but they do show up....
The LP or spinal is also important, to rule out infections and possibly to check for LYme disease...is that being done? It needs to be...Lyme has many symptoms which mimic MS, but they are truly different diseases...
its obviously going to take some time to get answers, and much as I hate to say it, youre going to have to be patient with this. Continue seeing your Neuro and stay with the testing....it might take a real problem before they are willing to go further with this, such as a honest to G-D relapse...right now, you are experiencing symtoms which may or may not be MS related...until something really developes on film (MRI) or by testing (LP) youre going to have to be patient..
Feel better and TRY not to stress. It only aggravates the condition, no matter what it is.
Nikki

conni hutton · 01-05-2008, 07:47 AM

thanks so much for reply your the first person to anwser and I so appreciate it. I got my results back yesterday on my spinal tap and it came back neg. but,my neuro reguested me to make an appointment. so not sure what that means. hopefully to discuss whats next. I understand about the frustration issue and I know it takes awhile to determine if these symptoms are ms related. I just know that this burning issue I have in my upper back mostley on the left is killing me. some days are worse than others. I have had blood work that did not show lyme disease. not sure if there is other test that show that or not? I just want a diagnosis? I hope my neuro has some ideas on what the spots are or could be? she did say she wanted to do another mri in 6mths on the brain. not sure yet about another spinal tap but, I guess there will be. so far, it just came back with the protein level high. maybe we will discuss all of these results and she will have some idea whats happening to me. not sure what the abnormal results from the eye test means either.
im just ready to be told what ever it is and hopefully get on the right meds or treatment what ever it is to resolve some of my symptoms.
I just want to think you so much for replying. It feels really good to know that someone read my post and responded!
thanks, I hope to chat with you again.
conni

MSNik · 01-05-2008, 07:53 AM

Conni, youre welcome. No need to thank me. Support here, is freely given!

You probably wont have to have another Spinal Tap. THey usually dont repeat those...high protein levels are actually not unusual at all. Dont sweat that....most people get high levels, simply from a virus or something..it doesnt have to mean anything.

Now, Lyme is a different story. You want to be absoutely 100% sure of where the blood work was done. Read up on IgeneX. Youll understand more about it, or check out the LYme board here on healthboards and read some posts...Lyme is one of the single most MISdiagnosed diseases around. So many people think a negative blood test is a negative result, but over half the blood tests done, show either false negatives or false positives unless they are done by a reputable Lyme agency.. (IgeneX).

Dont stress making the next appoitment or even worrying about what will take place. ITs really important that the doctor monitor both physical changes as well as radiographic ones. (MRIs). Its likely that you will have the MRI repeated, which is the smartest thing to do....as I told you before, MRIs change weekly/ daily even. Give the doc a chance to explain his or her game plan and let us know what happens, okay??

Here if you need us..
Hugs
Nikki

Johnstay · 01-21-2008, 10:06 PM

Quote:

Originally Posted by MSNik

The MRI is probably the most significant test you have had done. And, just because nothing was showing up when you had it, doesnt mean that the lesions wont show up in the next 6 months or so. Did the Neuro talk about repeating it in the future? He should be....MRIs detect what is active or there, NOW, but things change in an instant. THey dont go away, but they do show up....
Nikki

I had to ask what you meant by this quote. I just recently spent 1 week at Mayo Clinic in Arizona, concerned that I might have MS. I got an MRI and the Neurologist said that it looked clear, No lesions. I asked him "Is it possible that they are just not active now or that they will form later?" "He said "No, once you have any symptoms, the lesions are already there and will show up" Basically indicating that the lesions are the cause of the symptoms.

So now after reading your quote, unless I am not understanding .....even though my MRI was completely clear and the Neurologists opinion was that I didnt have MS, I could actually have MS just because the lesions were inactive thereby they didnt show up?