Denial... not a great idea.

[NickerBocker]

Hi! So, I hope my post isn't to personal as I tend to be overly blunt and honest.

Five years ago I woke up one day and had no lift in my right foot and also no feeling on the top of my foot and up the outside of my calf. I was at the doctor's within an hour and driving myself there was difficult since it was my right foot!

That was my first experience with a nerve issue. My doctor did some test in his office, tapping things and the Babinski response thing... my toes still go up instead of down. But, he never sent me for further tests and said we would watch and wait.

Since I lost the feeling and use like turning off a light switch, I expected to just wake up one day and have it back. Instead, everything came back slowly over about two months. Doc said if it happened again or any other symptoms, that I should return.

The next four years were uneventful, so I assumed. Of course, I started urinating 20 to 30 times a day, limbs going completely dead at night, dizziness while laying down, unexplained aches and pains in muscles and joints... but hey, I was in my early 30s. Things change as we age.

Then early last year, I had some major girly problems that landed me with a complete hysterectomy in May 2012. I still have my left ovary, so no surgical menopause. Surgery and recovery went terrific!

Summer 2012, I started having a hard time swallowing. Now, you'd think this would get me to the doctor. It wasn't like a tickle in my throat... It was really difficult to swallow food, liquids, or just to swallow nothing. I REALLY hate tests, so I decided to wait it out. It slowly improved and within two weeks, I was again back to normal.

At one point I lost feeling in the outside of my right thigh, but it didn't cause any motor issues... so I ignored it. I can feel it now, so apparently it fixed itself.

January 2013, I lost use of my thumb, pointer, and middle finger on my left hand. Also had some loss of feeling up my hand and wrist. This lasted 5 or 6 days and my husband thought it was from over use... but that's when I started researching my symptoms more in depth... and I knew I should probably see my doctor... yet I still didn't make an appointment.

I realize this is getting really long. Sorry. But this is also where it gets interesting and where I could kick myself for waiting.

Feb 26, 2013... I started leaking urine (constant slow leak) and lost sensation. That got me to a doctor! Through all of this, the only documented symptom I've ever had was drop foot five years ago... so, I get to see an out of town urologist the end of this month who treats neurogenic bladder and will send me on to a neurologist if he decides it necessary.

I'm ok with my primary doctors recommendation for the urologist first because in all honestly, this is the only symptom I know I could never deal with for the rest of my life. Besides that, I really really hate tests.

From reading online, I feel like there's a real good likelihood that I will someday be facing a MS diagnosis. Am I wrong in that assumption? I don't want to be a hypochondriac. In my situation, where would you go from here? And if I could also please ask that you explain the benefit of the suggestion. I don't need answers just for the sake of answers... I'm perfectly fine not knowing unless there's a benefit to knowing... if that makes sense. Thanks a bunch.

[22cyclist]

NickerBocker: Your symptoms sound like MS, but could also be one of its 400 mimickers. Nonetheless, you need to be seen by a neurologist, preferably one that specializes in MS. When you go, you need to bring a list, one like you listed here, of all of your weird neurological symptoms, how long they have lasted (since yours have lasted >24 hours, they qualify as true exacerbations), and how long in between you had that you felt better. Note: some symptoms do not go completely away, but generally get somewhat better after an exacerbation.

I would ask my PCP for a referral if the urologist doesn't give you one.

You really need an MRI. I believe in your case it is worth perusing since your symptoms have been so steady and consistent with MS. I ignored mine for over 6 years and all it got me was more lesions in my brain. Not smart.

Good luck
Lisa
Moderation Team

[Cat Mom]

I would want to know for the simple reason that there is treatment. I would continue on the path you are taking, if it's not MS, there may be more than one issue that needs to be addressed. If it is, someone will probably "connect the dots" eventually but usually it takes some elimination of other conditions.

As the old saying goes, hindsight is 20/20 (no pun intended). I got diagnosed right away but looking back, I blew off some simple things I never would have gone to the doc for. I am an otherwise healthy 47 year old. I think being on the lookout is not a bad thing, even if you feel like a hypochondriac.

Please keep us updated on how you're doing, I hope it's not MS and I'm sure you do too!

Jen

[dalechilders51]

NickerBocker, I agree with catmom and Lisa. I would do what you have to, but get a diagnosis. MS is a progressive disease and guess what it does while we're not being treated. Take care of your self. Dale

[NickerBocker]

Thank you all for the responses, they are truly appreciated.

I'm only 37 and never thought I'd be dealing with a bladder issue... and out of all the possible issues, I never knew a bladder could leak continuously. Ya know? Stupid sphincter!

Had I known that this could eventually happen, I would have been at the doctors last summer.

[diana82guzman]

Suggestions: Neurologist ASAP. Demand Referral.

Hi-Oct..4th,2012 Woke up w/strong pain bk left side of my head. 2day's later pain went to left side neck by my tonsils. Since Lay Off 7/2011. No benefits. But since I'm aware of Medical Centers/Clinics. Since I got Lay Off. I been sign up into a Clinic. So, able to see a Dr. Anytime :0) So, I went to the Dr. 1st. time. Dr. Response was I pull a muscle.... lol!!!! Yeah! o.k. Than 3 day's later after pain went to my left tonsil. And by than already went for 1st time to Dr. & her response was: I pull a muscle. lol!!!! Pain went to my right temple. But than it was a sharp pain. Just like when you plug in something into the wall. Just like an electric shock. By than right side of my brain numb, my right ear numb, my right & hand numb.

Went bk to see Dr. Said 1st., we must do a blood test. Blood test that just bc of not having any benefits @this time cost me $160.00dollars. Than went bk for the review of the results. And she said. You need Vitamin D. lol!!!! All of this time. We're talking about a Total of 50day's. Since Oct.. 4,2012 to Nov. 19th, 2012.

I started doing my own research @home just like you're trying to do. I'm going to say around 1 or 2 day's after getting the sharp pain in my right temple. Or right away. I don't remember. But definitely by the third time I was @the Dr. Office. I already knew. I was sure & positive. From all the research & reading. I had done on my own @home. I actually Diagnosed myself. I was Bless. Thank you! GOD. By the 3rd time I was @the Dr. & she said I need it Vitamin D. I ask her to plse! give me a referral to see a Neurologist. & I ask 3 times for it. I actually need to be kind of mean :0( Which I don't like to do. Since I was just thinking to myself. You're kidding me. Why do I have to ask for it 3times. Just give me the referral. And that's all.

Well, before Mond. Nov. 19th, 2012. appt. & 3rd Appt. @the Dr. that day. I had already look up the Best Neuro Science in NJ. Since I live close to JFK. in Edison, NJ. Neuro Science. As soon as she gave me the referral I just went to Neuro Science. And again. I was Bless. Bc who ever took care of me @the desk. After explaining all of my symptoms. And how long I already waited. Which again was already a Total of 50day's in pain. Scratching my scalp. All over like I was just crazy! & sleeping uncomfortable & so on. I actually though that since I drink a lots of water. It was just normal to pee at all of the times 24/7 :0( But Nop! Now I know why.

Anyways after explaining to the Lady my 50day's She said you must go to ER NOW! & I ask why!? She said. Bc you waited toooooooooo Looooonnnggggg!!! & sure I did. & Well, to make a Long Story short. Between Monday. Nov. 19th, 2012 to Friday. Nov. 23rd, 2012. I was hospitalized. I was Bless because My MS it's RR :0) Thank you! GOD. I can't complaint. bc there's other human beings down here in earth suffering. And I'm not. All I know it's. I have Faith. I believe in God. God it's Only! 1. Not 2. Just 1. Jesus & God are 1(Mathew Chapter 28: Vers. 19-20) God give us strength.

I started treatment Feb. 13th, 2013. Now it's been basically 1month. And again Thank you God. Everyone else from my understanding suffers side effects. And after my first shot. It help so much. I was just doing a lot of cleaning around our home :0) So, treatment it's important. Yes, at the beginning of course bc of the new diagnosed. & of course it's not easy to give yourself a shot every night. But after 1month. You just get use to it. It's gets easier & easier. :0) & treatment. & getting to find out ASAP why!? what it's the reason from all of your symptoms. And your health in general it's important. And just from my own life experiences.

Do not let everyone else tell you when & how. Just take action. At the end it's your health. It's your Life. Good Luck!!! I'm sure, & Positive. We are all going to be just perfectly fine. But we can not 4get. GOD 1ST. Everything else. comes alone ;0) God Bless you All!!!! Read the law of God. Follow up. As best as you can. Suggest to do so early in the a.m. 3-4a.m. Build up a relationship with God. God don't do any favors. He's not going to come & knock in your heart doors. You have to open your heart doors. & Allow GOD in :0)

Sincerely,
RR MS Nov. 2012 "Trust GOD"

[suziq38]

Don't demand a referral YET!

I want to make sure you have the really good insurance....PPO
if possible. Also, check with Human Resources at work to make sure that you have good coverage for medical disability.
Lastly, I want you to see if you can qualify for long term nursing care, if you have the money.

The PPO is important because I want you to eventually get to see a neurologist, then an MS neurologist. It is difficult to do that quickly if you only have HMO insurance. I get to go to anyone I want to go to. Presently, I am being cared for my the leading MS specialist at one of the largest teaching hospitals in Los Angeles. He has bee the director of the neuro dept since the 70's.

Disability is important in case you can not work in the future. At least you will have some income.

Long Term care is less important, but you never know.
I did not qualify because I already had seen
2 neurologists, had 4 MRI's blood work and a lumbar puncture. I also had recently filled an prescription for Norco, which is a really strong pain medication.
If the long term insurance is too expensive, skip it, I guess.
Hopefully you won't need it.
I am older (57), so I tried to get the LT insurance, but failed due to my pre-existing back problems. No MS diagnosis, yet.
I will try again to get LT coverage once they rule out MS for me. If it turns out mechanical rather than MS.

I am sorry for your troubles, but you do not know if it is MS or not.
Did you say that you had "tingling" in your hands and feet?

Do not go looking for a diagnosis (unless it is an emergency) until you are financially ready (insurance, etc.)
for that diagnosis.

After everything is in place, then get the referral from your doctor and see the neurologist.

Don't drive as much! if you have difficulty driving due to no feeling in your foot, this is very dangerous. You can get into an accident.

There is a chance that this is not MS, it could be neurological...in your spine. I just had spine surgery in my cervical area (upper) because the radiologist thought my symptoms were causing permanent paralysis in my legs.

You definitely need to get this checked out.

Good Luck.
Suzi Q

[NickerBocker]

Thank you Diana and Suziq.

Yes, I have great health ins through my husbands career and I'm also fortunate that I work for myself and collect an income whether I'm actively working or not.

My only issue right now is the bladder issue...

Suziq, you are so right about knowing whether it's safe to drive or not. Back when I had the drop foot, it never occurred to me until I was on my way to the doctor and came up to a stop sign and had to lift my whole leg from the thigh in order to lift off the gas. Very tiring.

And after that apt, I didn't drive again until the feeling came back... which took about two months to regain full use. Not only can someone cause an accident if they have a medical issue that interferes with driving, but your ins can refuse to pay and you can lose everything you own.

[JerryD]

You had plenty of replies, but no one asked about your blood tests. Where are your vitamin D levels ? You need to monitor you B-12 and magnesium levels, too . Are you taking daily vitamin D supplements ? All too often on this board, people say they were told by their doctor that they were deficient in vitamin D. They either begin some low dose of oral supplement or get a shot from their doc and don't follow up very seriously. Low vitamin D is nearly 'epidemic' . I asked my 3 doctors and they told me that they see low vitamin D in their patients, regularly.
I will not argue that low vitamin D causes MS. I am just saying that you need to be aware of these levels. You need to get these things 'optimized'. good luck

[ms382012]

Ask to get a referral

Even if the urologist finds something, your symptoms in the past should warrant a referral. I had to ask my primary for a referral. We still don't know if my lesion is a precursor to MS or an abnormally large lesion due to migraines. But at least a doctor finally found something instead of just insisting my pain and fatigue were "just" fibromyalgia. Not that fibromyalgia isn't real. But it should not be diagnosed without ruling out other things and it is not an explanation for everything I experience. At least you may finally get some answers