Probability of it being MS?

[LauriAnn68]

I am a 38 yr old female & I live in Michigan. I have numbness/tingling in hands now for about 2+ yrs. Last year I developed it in the legs & feet. Earlier this year I developed a muscle pain weakness in both of my feet. To the point where I can barely walk sometimes it hurts so bad. About 7 months ago I developed double vision. I aslo have major bladder issues, that even surgery hasn't corrected. MY GP has ran all kinds of tests. Bloodwork, x-rays, EMG's, Cervical Spine MRI's, Brain MRI etc.  Everything is coming back normal. I get extremely fatigued almost daily.  Vision gets real hazy and really hard to focus at times. 2 neurologist's didn't have any answers but said they couldn't rule out MS.  My GP said that there are "spots" on my brain MRI but most everyone has them. To wait another year and have another one done to see if the "spots" develope into anything. He says he's pretty sure that it's MS, but won't give me an official dx. I was taking Neurotin but it was to sedating for me even at only 300mg. I am now on Cymbalta. This has really helped with the muscle pain in my feet. I was also starting to get the signs of depression so he said Cymbalta would also help that. I've had the intial tests for Lyme's Disease but they came back normal. I plan to follow up with a LLMD. With all these symptoms can you have MS or the start of it without having full fledge lesions? Any other tests for MS I should request? Is starting treatment now for MS a good idea without lesions being present?

[soldy]

Hi,
How about 2 weeks vacation  on small Caribbean island.See what happens to your symptoms.Keep detailed notes.

[LauriAnn68]

Wow I wrote the original post a little over 2 years ago.  Guess what I finally got this week??  A ANSWER!!  It is MS.  Since the post back in 2006 I had been to the Cleveland Clinic, The University of Michigan and 2 new neurologists.  My current one called me (well his nurse) right before Christmas and said it had been 10 months since I had been in and the dr wanted to see me again.  Went to see him the beginning of this month.  He sent me back in for another brain MRI & full spinal MRI.  I thought he was wasting my time & the insurance company's money since I just had the same ones done 10 months ago and they came back normal-no changes, same two lesions.  Last Friday his office called and said all my results were in and the dr wanted me in the office Monday morning.  My response to the nurse was, well this can't be good.

I'm not sure exactly yet what the difference was on this MRI compared to 10 months ago (I haven't gotten the written report yet) but the dr said what was seen is consistent with MS.  He wanted to start me on treatment but the report from Cleveland Clinic (a year ago I went) suggested a Lumbar Puncture.  So the dr wants me to have the LP done before we decide what course of treatment to take.  I have the LP done tomorrow.

I've suspected now for at least 3 years along with my doctors that it was MS.  So finally hearing that it is isn't really a shocker.  Although I don't think the whole reality of it has really set in since nothing has really changed.  Plus what if the LP comes back normal then what?  Back to limbo land possibly.  I asked the neuro that question and he says well we're back to where we are now deciding whether to treat or not.

[MBKB1]

LauriAnn,

As I suggested to another person here, have your B12 level checked ASAP. (If you haven't already.) Deficiency of B12 can cause the symptoms you posted about. But this diagnosis is often missed.

Hope that helps.

[LauriAnn68]

Thank-you very much for all the useful information.  I have researched the possibilties that you all gave.  I've copied information to bring up on my next app't with my doctor.  Also calling today to make the appointment with the LLMD about Lyme's.  

Whatever it is that I have it seems to be progressing rather rapidly.  The blurred/loss of vision is happening much more often.  Muscles in my feet/toes are doing wierd things like 4 of my toes will point straight down and my big toe stays in normal position.  Very painfull when this happens and I can't straighten them myself.  Have had to have my husband like pry the 4 toes back into position.  

I have also fell one time without reason.  I was walking out my front door and next thing I know I'm laying on my front porch wondering how and the heck that happened.  Also looking around to make sure no neighbors seen it.

I'm tired almost all of the time.  Some days it just hits me like a ton of bricks that I'm so tired I can hardly keep my eyes open.  Naps are becoming a very frequent thing for me lately.

Again thanks for all the advice and input.  It is greatly appreciated.

[dpettitt]

Yeah, LauriAnn, research the Chiari Institute. It's interesting, sometimes missed on an MRI, and you seem to have alot of the same symptoms. It may be out of the ordinary but right now... it doesn't seem like anybody has dx you with anything that is ordinary. Time to look at something else. Good Luck! By the way, I just had the migrating parasthesia-I think its related to my chol meds. My neuro also tried to say I have MS (normal MRI). Very scary but be reassured that not all people with MS become debilitated and it's not fatal. Read as much as possible on it and you may find that although its scary..you can recover. (some people never even know they have MS until they die and it shows on their autopsy). Educating yourself with as much information as possible is the best way to stay calm and focused. I think alot of doctors are insensitive to the emotional rollercoaster ride associated with a dx like that and don't understand how comforting it would be to hear "its not fatal" and alot of medicines can treat it without debilitating the patient (sometimes your body will remyelinate spontaneously). Good Luck!! I'll check in with you periodically.

[dpettitt]

I am an R.N. and I agree that the body can definitely be toxic by mercury/metals/abx., etc. You can buy system cleanses at a Health Food Store. In fact- I have been having progressive migrating numbness and tingling since aug.06. (8-10 weeks after using a liver cleanse/full system cleanse to lower my chol). It worked so well that I believe it has depleted the myelin sheaths in my nervous system (like rubber around an electical wire). The myelin sheath is comprised of apprx. 75-80% chol/lipid (fat). Destruction leads to a short cicuit. People taking chol. meds should research its effects on the nervous system. My cardiologist denies it (he's just concerned w/ lowering my chol levels because its hereditary and my levels have been over 500 since I was 19. This system cleanse in conjunction with my chol meds dropped it in 1/2 in apprx. 8-10 weeks. After 21 years of statins, thats a rapid insulation loss to my nervous system. I have stopped the meds. There is a chance for remyelination. Hope this helps someone. Also, sometimes an MRI is misread. FYI: Also look up "Chiari malformation". Lots of symptoms like MS, not heard of alot, and there is a chance for correction. Let me know.

[Pussywillow]

I am curious, are you a dental assistant or a someone in the medical field? Most in those fields share your opinion. I hope you have even done some research before you start saying that mercury posioning does not really cause problems as this may be a link to a lot of healing.  Mercury poisoning is referred to by doctors who are aware, as the silent genocide.  The Chiropractor I am seeing was sure that I had MS, he had no idea I had silver fillings. I just want you to take a look at this website it is up to you if you even look at these sites.
http://zap.intergate.ca/mystery.html
http://zap.intergate.ca/speech.html

Cheers.

[sweet_g_grl]

Hey there. Going through this is tough. I went through it last year at 19. I have MS. My nerver conductions were normal and blood tests too. Since the first two neuros had no answers, ask for another one, and keep asking for new one til you get a straight answer. Many LP's and MRI's come back normal and people do have MS. Alot of people do have the "spots" and dont have MS, but the difference is, that when given contrast, people with MS light up in a different way, kind of like a christmas tree. There are diseases that mimic MS as mentioned before Lyme does, BUT it doesn't show lesions. and Mercury has been show to make some symptoms, but not really, and its HIGHLY unlikely. There is a disease I read about before called Hughes Disease or Syndrome. And it is a blood clotting disorder that affects the brain and shows lesions, to test is a regular blood test. Maybe ask your doctor about ALL the things people have mentioned here and request that you be tested, if you want a test, a doctor cannot refuse you unless it is harmful, which these are not. Good luck in whatever happens.. and try not to worry very much.

[Pussywillow]

I had the silver fillings place in my teeth at 10 years.  My problems started at that age. 5 years ago it got worse I ended up in a wheelcahir for 31/2 years.In sept/06 I lost my ability to speak.  I suffered from jaw problems tootaches. My jaw ached especailly around the fillings.  Since I removed the fillings 3 big ones, I am now out of the wheelchair and I no longer require a voice amplifier for speaking.  I am 40 years old figure out the math. I went through all those test and all were normal.
Once the fillings are removed detoxification must take place to remove the mercury from the brain and blood.  I am going through chelation treatments via alternative medicine and I am now on my way to recovery.  It takes from  1 to 5 years for complete detoxification.

This may not be your problem but all your symptoms are similar to  those of mercury toxicity. You should really consider contacting  DAMS National Office at 1-800-311-6265.  (Dental Amalgam Mercury sybdrome)
Cheers.

[kitlyn]

I am too going through tests to rule out MS , will have lumbar p soon. My neuro told me he was hoping for more spots on my MRI. of head, which showed two 14.cm and another . I don't know what s wrong w me. Hopefully lumbar will show something. as i am tired of being so ill. Oh my ..about the mercury fillings.. i had a few  as  a child.i am now 41. Did you have any teeth type pain.. I have had alot of teeth pulled too, though.

[Pussywillow]

I suggest that you walk to the mirror right now and check your mouth.  If you have any silver fillings you may be suffering from mercury poisoning.  Mercury also comes from tick bites in the form of lyme disease.  Mercury fillings(silver fillings) are very hazardous to your health.  I too had all those symptoms and was in a wheelchair for 31/2 years I also lost the ability to speak.  The source of this illnes which went undiagnosed for a number of years was from the silver fillings,.I had those toxic teeth removed and I am going through recovery.  I am going through chelation treatments, fully out of the wheelchair and I am once again able to speak.

Google "symptoms of mercury fillings:
Google" Dental Amalgam Mercury syndrome"
Good luck.

[cat457]

Forgot to ask you this....  I assume that the Neurologist did a neuro exam where he checked your walk/gait, balance, resistance (muscle strength), reflexes, etc... were all those normal???

[young at heart]

I have MS and the DX was initially made without lesions,but other test were conclusive.Lumbar puncture,evoked potentials,I had an VNG for hearing loss that detected brain stem lesions.
The earlier the treatment the better the prognosis.
If you have concerns of Lyme get it futher tested.

[cat457]

I would go to an LLMD to rule "out" or "in" lyme disease, which mimics many diseases including MS. Lyme is an emerging epidemic. I have heard countless stories where people were mis-dx'd for MS and ALS  and then later got a real dx with Lyme.  Most standard blood test cannot detect Lyme, as this pathogen can hide in spinal fluids, muscles and tendons.  Go to lymenet.org to find a LLMD... also check out publichealthalert.org and betterhealthguy.com.
Keep checking back here at your post as I am sure that people that have Lyme will be posting to help you out.
Best of luck in getting a dx, treatment and getting better.