how do I know

OK I am very upset with doctors... I am 31 male with two kids and married to my high school sweatheart together for 15 years. Good job all of that good stuff we all want in life. Two years ago I started having bad right leg pain mostly in the hip and thigh, I bought a cane. Went to my cardio to check for PAD he said no and I moved on. Four five months later same leg pain now my lower back and bladder issues needed a folly for two weeks could not empty my bladder, got better but did not go away. Uro said no prostate issue my be my bladder muscle, blew that off. Its better but never went back to normal. Go back to my GP and ask what the heck... he says all test are fine... Maybe a month later bowel issues bad did a colonscope and it was just inflamed called it IBS. My GP started me on pain meds because of my issues and pain. I settled down for a while no issue ever fixed themselves but are most of the time under control. Then a few months later I have these huge twicth I would almost jump out of my chair the jerk was so forceful, the what seemed to be sezures started on lasted for three hours very very hard to walk and talked different my doctor saw one him self, that when he said your going to a Nero. The first one in ten minutes I had anxiety, which I was mad at that. Go to a second Nero he seemed to care and said lets do an eeg. That came back normal, then the MRI came back clean. I was upset and stopped going to the doctors for three months and everything seemed to chill out, so I thought OK I did not know you could be calm and have anxiety but all my pains and "stuff" must be in my head. A few weeks after I woke up and felt I could not move managed to get to the bathroom and take a shower but then I was done called out of work, back headache legs hurt back pain it seamed like everything hurt. Stayed in bed and the next day better. So I figured I had a bug or migrane (migraine) (history of migranes (migraines)).

I said to myself your fine lets get our **** together. So that month which was November of 2011 I pushed and ignored everything and said its anxiety... then four weeks later I woke up and walked very different could not straighten out head shaking arms shaking on and off and then I could not talk right like I had a stroke. I stayed at work thinking it will get better next day same thing, third day I called out and went to a new Nero and he said I have a stress and anxiety issue. But lets do an MRI, he did not even call back so I call and the MRI was clear..


went to my GP and he said what is wrong Jon this is not good your speaking different and I could not stop moving. Went for a 3 day EEG since Nero number two was stuck on sezuires, I left after 24 hours no events but could not repeat the three items I was to remember and the feet together test I fell to the right first time.

I feel my vision is different I do wear glasses so maybe time for new ones my eye doctor ask what's wrong, my wife explained our BS and he said well I can check his optic nerves and field of vision test. So we did that and the right eyes optic nerve is enlarged and field of vision in the right eye is limited. I had normal results last year for my eye exam. My question is what do you who know you have MS think?

[jenphilly]

Problem with asking here...  your symptoms could be MS, but then they could be something else.  

One question, did your doctors only do a brain MRI?   My brain MRI is clean too...  my cervical and thoracic spine MRIs on the other hand are a bit of a mess...   If your doctors did not do C and T, ask for that and make sure where the MRI is being done is using a modern machine.  The older MRIs use a lower power magnet and may not pick up the smaller lesions.  

Try to find a neuro who has some experience with MS.  If you live near one of the MS clinics, consider calling to be examined by them.  If nothing else, it will rule out MS and give you a really thorough rundown of what it could be.  

Good luck...  know it can be a nightmare going thru diagnosis.

jen

[jonlovesbenz]

The T1 T2 MRI of the brain are clear my, GP said MS when my wife ask him what this could be. When I told him my Nero said no MS he ordered a spine MRI and sent a request for me to be approved at UT southwest MS clinic here in Dallas. Since you have MS do you have these types of symptoms?

[Deb61]

I'll be seeing someone, too, at UTSW in Dallas.  I do have a diagnosis of MS, but will be seeing an MS specialist for an opinion about treatment.

I have many, many symptoms because I've been sick for so long.  I do have some of the symptoms that you've described--bladder/bowel issues, visual problems (including optic neuritis), tremor (including of the head and arm), and jerking of the muscles.

It took a long time for me to be diagnosed because I was seeing the wrong doctors.  I was going only to rheumatologists when my problems were neurological.

I've not yet been to UTSW, but there are others on this forum that have (I know Jensquiter has).  She has had good experience there and says that they have state of the art equipment.  You will more than likely have a good experience, too.  I would trust that these doctors will get to the bottom of what is causing your symptoms.  It may not be MS.  I worked with a girl who had many of the same symptoms, but ended up having Devic's Disease.  For a long time, she was undiagnosed, but after staying with her doctor at UTSW, they did eventually figure it out.

[jenphilly]

I have had very minor bladder problems...  in the past they thought I had IBS, about a year before MS, but my neuro feels I've probably had MS about 5 years, so have to say, probably yep, did have bowel problems from MS.

The only type of tremor I get is in my left leg and its more like a pulsing movement.  On a bad day, if I lay with my knee bent, my leg will kinda waiver back and forth.  

I do have full time stiff / numb feeling in my left arm and hand, its gotten to be my new 'normal'.   I don't get the muscle jerk to the degree you describe, but my legs will start to spasm, but never go into like a full blown charlie horse.  

Touch wood, I've never had optical involvement and had my optic nerve measured about a week ago, the ophthmalogist said its thick and healthy, no signs of involvement at all.  

The other problem I get is the fatigue.  Be it waking up and feeling like everything wears a hundred pounds, or making it thru a grocery shopping trip before my legs get stiff and heavy, tired feeling.

The first neuro was convinced I had CNS Lyme, which explained all my symptoms.  They even started me on the rocephin (IV antibiotics for lyme).  They did a picc line implant and at the same time did a spinal tap.  It was the spinal tap that convinced everyone it really was MS, had bands, the proteins and not a single indication of lyme DNA in my system.

Keep searching, I hope they come up with something else for you.  I'll hope they find lyme for example.  It's hard to find in routine bloodwork, the little buggers have a hard sheath that allows it to hid....  

This can be frustrating, so many of us can share and sympathize for what you're dealing with.   Keep posting...  if nothing else you can vent to people who have been where you are and hopefully can give you some insight.

For the IBS symptoms, look for a product called Nature's Remedy for IBS.  I found it at CVS and Walmart.  Did wonders when I had bouts.  

Are you taking any supplements?

Jen

[jonlovesbenz]

Thanks for the info. I hope UTSW does help you and myself. since my last spell I have been focused on getting better. Since I am also open minded I was starting to think some how I had anxiety until my GP asked me how anxiety would keep my bladder full and inflame my stomach an colon which was shown on endo and colon scans. It's not that I want anything to be wrong I just can,t make my symptoms go away for good. A lot of these Nero's act like used car salesman... lol

[jonlovesbenz]

Yes my GP put me on a daily vit D since that is and has been low for 6_8 months. Plus I take fish oil and CQ10 for my cardiomyopathy. See this leg and arm thing sounds like what I get.

Some days legs work pretty good others I am crawling up my stairs.

By the way this is helpful! Thanks ladies!