Been diagnosed with demyelating disease, unspecified..still

[Catsfryfish]

Hi all. I am new to this site and I need some advice/help. So a brief hx of me. I am 36 y/o female with a precious hx of optic neuritis around the age of 10/12. Otherwise pretty healthy. I had a bout of vertigo about 10 yrs ago that lasted for a week. Then otherwise healthy, became an AEMT and also been working as an ER tech. About 5/6 months ago when working I noticed I would trip over my foot more often then normal, shrugged it off as being a third shifter. Then at the end of june I was out of work for two weeks with vertigo really bad, went to therapy and meds helped cleared it up, still kept tripping over my foot. My PCP ordered an MRI cuz during therapy I had nystagmus in the eye. MRI showed two lesion in corpus collasum. Went back to work for a month then my leg started to go numb/tingling achy pain. Foot would also get numb then developed back pains. PCP ordered MRI of lumbar as well as x-ray. No lesions but found a mild bulge in s1l5 with disc degenerative disease in a few others. Off of work. Was put on gabapentin and tramadol went to therapy about 6 times. During that time I developed a frequency to urinated, no relief about the leg, headaches, cognitive issues like can't handle to learn new things or find old things too much to handle, moody etc. Now I can always handle stressful stuff, I lived/worked that for yrs being met and tech. But my left leg feels like it's not mine. My mind feels like it's fighting with my body. Now I know from my neurologist who is ms specialist he said I also being having episodes os "ms hug" that's lasts a few seconds to a few hours. Thought it was anxiety. I also have a few other things but I'm so confused as to wether my leg issues is a disc or ms issue. My PT said that she believes it's neuro not musculoskeletal cause I have hypersensitivity in areas of my body.
Cervical MRI came back clear. I have a lp this Thursday and next Thursday another brain MRI and a thoracic MRI which has never been done, both are w and w/o contrast.
Has anyone been close to having this?
Am I crazy? Is it the meds? Is it disc?
I have days that I feel great and think I am crazy that I had these symptoms then bam it's a slap in the face when I have bad days and it's mostly leg, urgency to void, extreme fatigue, loss of interest.
Any advice, suggestions, comments!!

[luckyme]

Welcome to the site. Iv had some similar issues as yours. Mostly with both of my legs. It's pretty annoying! I have been dx with rrms. I have 7 lesions on the brain, one on c-2 spine and one at t-10 spine. Three of which were active. One being the one on t-10. I say this because usually symptoms with the legs and your" ms hug" are related to the thoracic spine. I would be surprised not to see some kind of activity on your t-spine. Keep in mind that there are a lot of other problems can can mimic the symptoms of ms. I'm sure by now you've done some research. With the testing that you've had done already, I'd say you may need more testing before coming to any diagnosis. What other testing have you had? MRI's, bloodwork, spinal, ect?

[Catsfryfish]

I actually haven't had and blood work done, just urine. No UTI. Had a Brian, cervical and lumbar MRI. Lesions shown in Brian only. Having lp done tomorrow and another Brian MRI And thoracic next week.
Is it normal to have a really good day and then having a few bad ones?

[luckyme]

One thing with ms and I'm sure many will agree, symptoms vary so much between cases that the unexpected is more normal than a specific symptom happening a specific way. However!!! Don't jump the gun on this! IMO you need much more testing done. Thoracic MRI and blood work is a must. Also have your MRI's been with and without contrast? Your dr should also order extensive bloodwork. Vit deficiencies, CBC, jcv, lyme, just to name a few. The more data that is collected the better chance for a true diagnosis. I consider myself lucky. My dr gave me so many tests which at the time, I felt like a pin cushion, but those tests showed enough conclusive evidence to give a positive diagnosis without having to get a lumbar puncture. Others are not so lucky! Don't be afraid to do your own research. Knowledge is power and will really help you understand the testing and also help you keep your drs in check in making sure that they'r doing the right things. Not all neuro drs are created equal. If you know what they are doing to you then you know the right questions to ask. I am not a dr and can only speak from my own expierience but there is a lot of documented info on this site that will benefit you. It did for me!

[Catsfryfish]

All my mris have been with and without contrast. I understand that ms is hard to diagnose and could take a long time. Whether or not I have it, whatever is going on is frustrating. I have read four books on ms. From being healthy and active to all of a sudden I'm tired and can't so the things I used too. I'll keep ya updated on my results. Thanks for responding

[luckyme]

Also wanted to add, you mentioned you have a lumbar puncture scheduled? That was my last resort if all the other test were still inconclusive. MRI's have really been the go to nowadays. Lp is not a pleasant thing!!! You really should get the bloodwork also. Especially the lyme test cause lymes disease is one that is prob most misdiagnosed for ms. Symptoms can be very similar and can also cause lesions in the brain like ms.

[luckyme]

I'm not very computer saavy or I would send a link but others on this site are and I'm sure would send you some links on it. Good luck to you!!

[Catsfryfish]

My lp is tomorrow. They did blood work back in July when I had the vertigo and the only thing that was elevated was my cholesterol. But I know blood work should be retested.
Thanks again.
Btw what's your story? Do you have any lesions? What r your symptoms? How long did it take you to get diagnosed

[NHE]

My lp is tomorrow. They did blood work back in July when I had the vertigo and the only thing that was elevated was my cholesterol. But I know blood work should be retested.

Good luck with the LP. Make certain to stay horizontal for a bit afterwards, 30 min or so, even if you feel fine afterwards. This can help minimize the risk of getting the post tap headache.

[luckyme]

I am a 41 yr old male. I currently have 7 lesions on my brain, 1 on my c-2 spine and one on t-10 spine. I am also jcv positive which could put me at risk to develop PML with the use of certain dmd drugs. I am currently taking nothing except vit d and b complex cause my bloodwork showed very low numbers in those categories. It took about 3 months for my official dx. That may not be the case for everyone. My family dr really went out of her way to get me in to my visits quickly instead of waiting 2 months to see neuro. Based on the MRI findings on me, three of the 9 lesions were active and the rest were not indicating Iv prob had this for some time. This also helps the diagnosis because in ms it is the number of lesions new and old that shows progression. I.e. If you have one non active lesion it may have been there a while with no way to tell how long it's been there or from what caused it.

[Catsfryfish]

So far I only have two non active lesions in the corpus collasum area, MRI was done 3 months ago. I had vertigo in end of june for two weeks then worked for about a month and now have been out since beginning of September. I seemed to be getting worse, except yesterday I felt great!! Was so awesome to feel that way.
I guess I'll wait for my lp results from today and two more mris next week.
It feels like a roller coaster of having good n bad days.

[luckyme]

Hang in there!!