how long to diagnose?

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how long to diagnose?

Postby sbee87 » Mon Jul 19, 2010 4:38 pm

Hello. I have referred to this site many times for questions I had and to look over posts from people on the site to make me feel like less of a crazy person for what I have been feeling for the past 7 months. I am 23 years old and have been having numbness, nausea, lightheadedness, abdominal cramps, rib pain, itchy feelings, and weird muscle spasms since January 2010. I have a history of random numbness since I was about 16 or so and always thought it was bad circulation. I have searched other symptoms I have had and have looked at other autoimmune diseases to try to make sense of what is going on and to see if this could be anything else. People are trying to tell me it is just "stress" but after 6 months of this I know for sure it is not just stress. Has anyone else experienced a similar experience? I have been seeing a neurologist and they found one lesion on my right frontal lobe in February and I have another MRI scheduled in August. They are holding off for the spinal tap. I was just wondering if this whole process sounds normal or if anyone had to wait the same amount of time or even longer for a diagnosis because in the mean time I am still going numb, etc. Any thoughts or comments are greatly appreciated because up until now this is the only "reaching out" I have done. Thanks so much.
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Postby L » Mon Jul 19, 2010 6:13 pm

Numbness and muscle spasms are the symptoms that you and I have in common. I'm unfamiliar with nausea being an MS symptom myself but I'll be corrected if I'm wrong.

As for the lumbar puncture, make sure they are experienced! I had an amateur getting some practice. It took a long time, was very painful and led to a horrific relapse. Other peop0le here say that with an experienced doctor it's painless..

Do your symptoms come and go? I'm not sure if it sounds that much like MS. I'm no expert though.
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Postby sbee87 » Mon Jul 19, 2010 6:26 pm

I would never have thought that nausea was a symptom, but my doctor asked about nausea and when I said yes I saw him put a check on my chart. Yes my symptoms come and go, but one symptom is always present... I have not been "symptom" free since January. Whether I am seeing spots, or going numb/feeling heavy, feeling extremely lightheaded, weird pressure, or SOMETHING is always going on and not feeling right.

Thank you for the advice about the lumbar puncture. Depending on what my results are for my MRI in August, I am sure the LP is in my near future and will keep your advice in mind. Sorry you had to go through that on top of everything else.

I know the problem is I feel like I am going crazy, because I know that MS is so different for each person but there are common symptoms that are present in majority of those diagnosed. Right now MS is the only thing that my neurologist is saying it could be because they have ruled out the other autoimmune diseases, but I guess it could always be another mimic.
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Postby L » Mon Jul 19, 2010 6:42 pm

sbee87 wrote:I would never have thought that nausea was a symptom, but my doctor asked about nausea and when I said yes I saw him put a check on my chart. Yes my symptoms come and go, but one symptom is always present... I have not been "symptom" free since January. Whether I am seeing spots, or going numb/feeling heavy, feeling extremely lightheaded, weird pressure, or SOMETHING is always going on and not feeling right.

Thank you for the advice about the lumbar puncture. Depending on what my results are for my MRI in August, I am sure the LP is in my near future and will keep your advice in mind. Sorry you had to go through that on top of everything else.

I know the problem is I feel like I am going crazy, because I know that MS is so different for each person but there are common symptoms that are present in majority of those diagnosed. Right now MS is the only thing that my neurologist is saying it could be because they have ruled out the other autoimmune diseases, but I guess it could always be another mimic.


Well, there are many worse things to be diagnosed with at least! When I was finally diagnosed with MS I was relieved, having read up on all the other terrible conditions that it might have been. And at least with not-too-severe MS CCSVI treatment may prove to be viable (in my opinion it has already but others here will hate me say this, especially to someone who has not yet received a definitely diagnosis) and you may be able to say bye bye to it forever!

Thanks for your commiserations regarding the LP of mine but I'm over it now! I should have stayed in bed instead of staggering down the street to the supermarket, that was the problem..

In fact walking from the hospital to the underground station was like climbing a mountain now that I remember it.
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Postby rainer » Mon Jul 19, 2010 7:24 pm

1) I would push for the spinal tap.
2) Migraines frequently cause nausea. Migraines may or may not be caused by MS.
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Postby msgator » Tue Jul 20, 2010 7:13 am

it took three years for me to get diagnosed (the week after my 24th birthday) I had MRI's of my brain that showed nothing for two years and then finally showed some spots in my spine and had the lumbar puncture (I got lucky and had not issues) to confirm. Good luck. It is a tricky disease, if that is what it turns out to be. I totally understand just wanting to have a name for whatever it is you are dealing with.

Good luck,

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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