Maybe a Diagnosis Tomorrow?

[LizPickOne]

My name is Liz - I'm a 26 year old F from New Jersey (Born and raised!), spent 4 years at NC State University getting my BA in Business (Go Wolfpack!), and Ive been back in the Garden State since graduating in '09.

Starting feeling symptoms (or noticing they weren't just normal tics) at the beginning of 2012. First slight tingling, headaches, muscle spasms, numbness, blurried vision, etc. Previously I had been the picture of health, a HS athlete and gymnast....I knew something wasn't right when the symptoms became more obvious and I was becoming increasingly clumsy. And sometimes I would feel fine, other times I feel like I can barely get out of bed. Had to stay home yesterday because I felt so weak, and like my brain wasn't connected to my arms or legs

I'm an avid potter (pottery is my muse) and over the last year, my new nickname at the studio is "Liz Did It", because almost every time you hear a "crash" in the studio it's me, either bumping into something or dropping something. Not good. Clay in it's driest state is extremely fragile, and I can't seem to control my fingers.

I went to my GP multiple times in early 2012 with these complaints. He was concerned and ran a full blood panel, with presented me with a Vitamin D deficiency and Lyme's disease. Many of my symptoms could be explained by those diagnoses. However, after 10 weeks of antibiotics and months going by after, if anything, my symptoms have weakened. GP confirmed nothing new with the Lymes with a second blood test months later, so time for the Neurologist.

Had my initial appt the week before thanksgiving, at the appt she did a full Neuro workup - EEG, EMG, balance tests, etc. Not fun for someone who really doesn't like the doctor. She was able to at least tell me I had carpel tunnel, which I suspected quite some time ago.

Went for my R/O MS MRI w/and w/o contrast on Tuesday, report is at the doc's office today, and my Neuro follow-up is tomorrow, where we'll discuss what all those three letter tests have to say about how I'm feeling.

I'm beyond scared. Everything I read about my symptoms makes me feel like the only thing it could be is MS. I feel like this waiting game is going to get the best of me. I suppose I'm praying for answers, but I'm so scared that the answer will be one of my greatest fears: having an illness that I cannot cure and that will keep me from doing the things I love in life.

Thanks for listening; I will post again after my appointment tomorrow...please wish me luck, I really feel like I need it....

[Alicious]

Much luck to you, Liz. Please let us know how your appointment goes. We're here.

This is small comfort, and I'm still new to the game, but I'm nearly 6 years post onset and other than an eye that gets blurry if I overheat, I have absolutely no disability. If I hadn't seen the MRIs light up like a Christmas tree, I'd wonder if I really even had MS. Some people have it worse than I do, some people better, and as the years go by, who knows, but it's not a one way ticket straight to a wheelchair for most people.

No one knows what the future holds for any of us, and with MS it's even more of a crap shoot, but I know that what I thought MS was before I was diagnosed, and what I know know it is from research and talking to people here, is very different. It's a crappy disease, yes, but it won't necessarily rob you of the things you like to do. There are runners, hikers, and artists on here, still going strong.

Waiting is brutal. Hang in there, Liz.

[LizPickOne]

Thank You

Alicious,

Thank you for the kind words. I have done quite a bit of research, and know the dx would not be a death sentence, of course, but the thought of not being a normal, functioning 26 year old is terrifying. I guess I'm so terrified because I'm already experiencing extreme symptoms that I feel like someone of my age and health shouldn't - and that's frightening. I'm in the midst of an "episode" now, and I feel like my mind is not in control of my body, which scares the daylights out of me. My feet are numb as we speak.

I'll keep you posted, thanks again.

[JerryD]

Liz,
I am from your neighboring state, PA. We nare fortunate that we live in an area crawling with pretty good medical care. Keep up the fight and don't give in to this MonSter.
I would suggest that you never believe your doctor's statement ' your levels are low '... Always get the numbers so that you can identify what affects your levels.
I guess your doctor suggested a supplemental dose of D to correct your deficiency. If not, take matters into your own hands. I take 5000iu's daily and my latest blood test showed my levels at 50ng/mL. If your levels aren't higher than 50 ng/mL, you need to get them there. Ask your doctor. He/she will probably tell you that 25-30 is sufficient. I am not a doctor but I have been following this particular 'vitamin D' story for 4 or 5 years. Check the info on-line. You'll see that 25-30 is sufficient to sustain life. But it is too low for people with auto immune problems.
I have been battling this MonSter for around 4 years and MS varies every day. Good luck and keep us informed of your situation.

[Noah091]

How are ya doing Liz? My name is Noah, I am 27 from Wisconsin. I am in a VERY similar situation to yourself. A case of diplopia (double vision) brought me into the ER back in Sept of this year. My MRI revealed "numerous" brain lesions (between 5-8). Unlike you however, the only symptom I had was double vision... and it really wasnt even a problem unless I looked to the right. All that aside, I have an appointment December 10th where I expect a diagnosis. Like you I have been doing a ton of a reading about MS and the medications. Unfortunately even after reading every day since September 22, I am even more confused now

Most people will tell you that knowledge is power, so make sure you ask questions and do your own research. Please keep us informed with the findings if you can!

Thanks and take care!

[Wordsgood]

Hello to Liz and Noah. (Don't think I've seen you on the boards before Noah, or if I have I forgot. )

Waiting is definitely hard, as it not feeling "normal" like your peers. It's true, this disease sucks, but I would say to both of you that you are luckier than many in one respect. It looks like if you do have the dreaded MonSter, it's being caught fairly early. And they do say the earlier is caught and treated, the better your future looks in terms of how, or if your disease progresses.

I wish you both much luck in NOT discovering you have it, but also that neither of you has anything worse. Please keep us posted! Hugs all around!

[Ambushed1]

Not a Wheelchair!!

Greetings Liz: I too felt as tho I would be wheeling around b4 my dx in 05/12. However I am more active than b4. I exercise, walk my dog, ride my motorcycle, drive in heavy traffic, shop, shop, shop....etc.
No just because you "MAY" have MS doesn't mean you'll stop living. I take my meds daily and get on with life, enjoying every moment, feeling grateful I have others who understand and listen to my fears.
The MSsociety is available to you also, should you need support. I use them often and my friends in MSworld understand as nobody else can. You are not alone.

[LizPickOne]

two steps forward, one step back

So went to the Neuro on Friday - I forgot to mention last time that this woman is much more concerned about getting paid then listening to my symptoms (definitely going to find someone else). She walked in, told me she was sick and to stay away from her.

In two sentences she went over my non-dx. She said, MRI looks good, and other tests came back normal. Looks like you don't have MS.

Well, great, right? Except she could offer no real other explanation of my symptoms. Immediately she grabs her RX pad and starts jotting down/telling me I should now have an MRI of the cervical spine, that MIGHT show something. Meanwhile, I just shelled out $360 to have my last one - can't afford to do that again anytime soon!

Now, I know she only read the MRI report, and she only read it for the first time WHEN WE WERE IN THE EXAM ROOM TOGETHER. Is is okay to just rely on the report? Wouldn't you want to see the actual MRI and make an assessment yourself?

I know I'm upset because that only seemed unprofessional, but I'm still answer-less and still dealing with these symptoms, the numbess/tingling in my arms and legs and the blurry vision being my biggest complaints...

She didn't ask once in the 5 minutes I saw her how I was feeling, if anything had changed, or suggested any other probable sources of my dx.

.....back to the drawing board...

Thanks to all for your support, it means a lot!

[October22]

If the neuro you saw had been a man...

I'd swear it was the same one I saw! He was way more interested in rushing me out the door than actually talking to me and the little attitude when I actually had questions! The nerve of me, I guess.

Get a new doc asap! Can you ask to see an MS specialist? That's my next step. Wishing you the best!

[Fed Up]

LPO, don't give up. I had similar experiences. I am 59 and had similar issues, as yours. Since, I was your age. Through proper diet and exercise, I managed to keep mine at bay, for almost 30 years.

Last summer, I lost my balance and went to a local ER, outside my HMO, plan. As, I had been to 3 ER's with some sort of inability to "suck" in air (weak lungs), at times and it felt like something squeezing my chest. My B/P was elevated.

I went for a CT Scan and it was followed by an MRI. I was told I had a few lesions on the brain and it was M.S.

Oddly, I developed the strangest spasm, I've ever seen (as an ER R.N.) The side of my left leg had a pronounced and defined spasm, that lasted about 40 min. I had no spasm above or below it.

I grilled the ER Doc: I never felt I remotely had this disease. I was diagnosed with Fibro/CFS, 20 years ago.

Well, I was transferred to my HMO hospital in "serious" condition and was suppose to be "stabilized" while admitted.

I was transferred at least 80 miles or more from where I was (my vehicle). I arrived at my HMO in the AM.

I was told I was
1)Dehydrated: Not supported by any lab data:

2)Depressed, I have a history of this, 23 years ago, with the Fibro and an injury, which left me unable to work.
my
3) potassium was low and causing the problem

I drank like heck, until my B/P was as fatally high as it is low.

I just received my ER records and my potassium, was not only normal, was high mid-range, at the hospital ER
3) Depressed:

My primary told me to push and get this resolved. Unfortunately, all my M.D.s work for my HMO and mimic the above. One will not speak against another.

Last week, I found out my Potassium was normal and at my HMO 8 hours later, 25% lower~~~while receiving IV fluid therapy and in the care of medical workers.

I do not believe my potassium was low, now! I know I wasn't dehydrated and mostly....

Depressed: NO! The minute I was diagnosed, I started Essential Cannabis Oil.

My HMO docs, that I have been seeing for many years, quietly agree with M.S. (they need their jobs-I don't fault them for it, and at least, being honest with me).

I had a lumbar puncture: The results were: "Borderline"

wtf is that..with lesions and symptoms.

My HMO has a M.S. specialist that looked me in the eye and said, "You do not have M.S.!" Come back in a year and we'll repeat the MRI.
I now know, that is the McDonald way of diagnosing. The protocol for diagnoses changed in the past 2 years.

many other symptoms..but, I just wanted you to know, THAT DOES NOT MEAN YOU DON'T HAVE M.S. However, there are many tests for other disease's to rule out, as well. About 80, I think.

What you can do is exercise, diet and supplements. Push these M.D.'s and keep going back or get a new one.

I saw a site for M.S. that will give you a free consultation, if you were diagnosed with M.S. or suspect. It may have been the M.S. Society.

Last Thurs. (btw, all my symptoms-became a perfect storm, with the flu): I now have the flu again. Called my doc for an RX and while at the hosp. felt fatique and drained, my legs were like lead and I felt really weak. The muscles along the back of my arms, remain somewhat stiff.
Fear of becoming as weak, as I was, earlier in the year with the flu/M.S. symptoms, I was scared~~of going back down that road to almost no abilities.

They admitted me, repeated the MRI and did one with contrast: Told me it was normal: Just a FEW white spots on my ******* brain! There are many.

When I quizzed the ER doc, last Summer: He said, "When you placed both of your hands on the top of your head--your lesions are there! It is not just a "couple" of lesions, as I said, it is extensive!

I continue to see M.D.'s and cancelled my appt with my provider today. Requesting a consult, outside my HMO.

Also, after vast improvement, I stopped taking my essential hemp oil. I was in the hospital last Thurs/Fri and was without it. And decided to quit it. I had really good results with it, too! (I'll restart, later)

I am taking Steroids and this evening, the stiffness is returning, all over, the headache. Oh and my B/P is up, not to mention the sycopal episodes. And I was diagnosed with the Syncopy, after getting over heated in an MRI, at the hospital.

You are in New Jersey, There is a Medicinal Marijuana Program there. I have found ways to get my medicine for free. The healing is not inhaled-that helps the symptoms more, but in the oil: search: phoenixtears: Run from the cure.

My plan is to be more symptomatic, to show these M.D.'s, I can only do that off the meds. As, the severe and extreme hard muscles in my thighs have been fine for 6 weeks. Off meds for 5 days and I feel the symptoms returning!

Stay on this and find out, what is going on with you. The MRI of your spine, is to look for lesions on it. I would not hesitate to get it. fedup

[LizPickOne]

Wow....I can see why you're "Fed Up"

Thank you so much for your detailed explanation of what's happened to you....unfortunately, it leads me to believe this is going to be a lot more of a politicial pain than anything else!

I am looking into different doctors now (hopefully a good MS Specialist, if anyone knows one in Northern NJ I'll take all the suggestions I can get!)

And Fed Up, yes, I am in NJ, but the medical marijuana program is stalled, ineffective, and I think there are only about 100 or so people that have legal prescriptions, and there are no dispensaries.

I, however, have tried this approach, and do feel better when under the influence of THC. It helps my muscles relax and allows my headache to subside. Its been a blessing, but I would much prefer a legalized cannabis oil regime....guess I'll have to wait and see.

I guess what confuses me the most is what constitutes a "normal" MRI. In your case, Fed Up,how is it possible to go from extensive lesions to a "normal" MRI?! I know if the lesions do go away, you're left with a black spot, right? How can it look so much more "normal" after an MRI that shows extensive lesions!?

I requested a copy of the MRI report to be mailed to my house so I can see exactly what the radiologist said, since the neuro said "looks fine"....whatever that means. Maybe it'll say something more...

The other thing I don't understand is why you can't just get a real diagnosis, Fed Up? After all these tests, hospital visits, etc, and as more data/facts fill your chart, isn't it becoming increasingly obvious you need treatment for MS? Or is this just how it works...they say you don't, they say you do, etc etc...?

[SNOOPY]

Hi LizPickOne,

I know if the lesions do go away, you're left with a black spot, right?

Not necessarily.

Brain lesions can heal and disappear and/or leave scaring (Sclerosis). Black holes indicate permanent axon damage. The brain can re-route around the permanent damage, but only to a point. Over time adding in more black holes can cause brain atrophy.

MS is a disease of the Central Nervous System(CNS) which includes the Brain, Optic Nerves and Spinal Cord. Lesions (abnormalties) can show in any or all of those areas.

There is not enough room for re-routing in the spinal cord and black holes, to the best of my knowledge, do not appear in this area. However, Spinal Cord lesions can and do heal/disappear.

Have you been to a Optometrist or Opthamologist about your blurry vision? If not that would be my suggestion. A Opthamologist and Optometrist specialize in the eyes. The eyes are not the specialty of a Neurologist.

[Fed Up]

Snoopy,

Thanks for the "Black" information. I am still "Glowing" in my head, MRI. I had a repeat, last week, due to symptoms appearing, while i happened to be, at the hospital. They were not knew, just the first time, I have left home, while feeling bad (to get prescriptions) and ended up in Urgent Care and hospitalized. I have complained to Medicare. They told me my spasms in the ER, was my Potassium, at my HMO. I saw last week, it was normal, 4.1, yet 12 hours later, my hmo's is 3.1??? I had an IV in the entire time. My HMO, is laying off healthcare workers, quietly.

Liz,

Fed Up, was how I felt after reading your medical issues! And FED up with our Gov't, I have medicare: And Knowing what I know, most patients go through with auto-immune disease. Talking to others, waiting for MRI's, spinal taps, etc.
What about the patients that, 'give up.' I was so weak and tired, I would have!

I DON'T WANT TO SEE YOU GIVE UP. That would be worse than Fed Up!

I've spent some time in the waiting rooms with others, that have been through the process, very similar to us. Seems to be the norm in Calif. with my HMO.

Now, I expect it. However, I have a serious medical history, starting from age 8 and many ortho surgeries. I've refused many surgeries, as many, simply cause more problems, than what they helped.
I NOW KNOW Why. M.S. and more convinced since finding this site last night!

It is my hope, you will NOT GIVE UP. And get diagnosed. I was, since the ER M.D., told me I had M.S., I am waiting for my HMO to PROVE I do not! With "borderline" spinal fluid...and my symptoms?

I am off my oil. I was paying for it, up until a few weeks ago. Now, the local Activist Community/ and Patients helping Patients..locally, I and others can get it and other meds for free. No income requirement. For local patients:http://reeferhaven.com/forums/showth...02-12-Free-RSO

I am not a grower or invested in MMJ. Just an appreciative patient. I have been getting it free for one month. MY balance had returned.

There are a few with auto-immune disease and caretakers of patients with M.S.: on that site. And a comfort to me.

http://reeferhaven.com/forums/showth...ght=Aunt+Suzie

I have been reading of M.S. and rso and found this site. It is difficult to find any. I saw one here, which caught my eye, and I dropped in. Then I read your post and I felt Fed Up. With your care and mine and many others! It was a PLAY on words, as well.

The Feds are a problem in our getting holistic care. And I am not one to refuse traditional care, I took it for over 21 years. I now have a life, even with these symptoms, compared to what the drugs did to me, over the years: for SPINAL/ORTHO/Fibro/CFS problems, I've had plenty of surgeries for, with bad results.

I would hate to see anyone else, go down the road, I have been! So I am gratefully Fed Up and have to get better, as I am involved in working on our legislators! Oddly, I was in the middle of selecting a 'group' of more serious patients, than I considered, myself! To use for "examples.'

One of my comrades was "undiagnosed" with M.S.( and has my SAME HMO, as me a month after I was, diagnosed. He has vocal problems and just had polyps removed from his throat. He is 69 and most definitely has M.S.

So, I am even more Fed Up. As, I suspect, we'll move into socialized medicine and everyone, will be treated like this, except the seriously wealthy and the legislators that control our health.

The only thing I don't like about my compulsive choice of a username is I cannot sign off: FU, somehow, that is just not me! lol
so I guess I'll use... Up!

[Fed Up]

I have my MRI on a CD, is there a way to post it?

I haven't a clue how to do anything fancy on boards. I am learning and my favorite site, Emmie (she is treating her Aunt Suzie, with M.S.--helps me. You have no clue, how much). I had plenty of difficulty, realizing and asking people for 'help.'

I really think something is wrong with my brain. AS, I am too nice to mean people! I wasn't, 30 years ago...I dished it right back. For the past 20 years, I just 'take it.' As, I did at that one site. I am loaded with ammunition, from this site!

I am TAKING BACK MY POWER!

Liz, I 'googled' Specialist's in my area for M.S.; it was weeks ago, I wish I saved it. There are two, one 25 miles West and the other 25 miles East. I went to the sites and found information on getting a FREE M.S.consultation. I'll try to re-find it. I had the impression, anyone could do that. And I will, as well.

It said, something like; if you have been diagnosed or in the process.... Free! You fit that. so, please google and see what you find in your area??? Up

[LizPickOne]

Fed Up, but won't Give Up

Thanks, "FU", lol...

It's just disheartening that MS is a condition that is dx'ed by ruling out other conditions. The standards by which they determine if you do have MS seem strict; it seems too many with MS go undiagnosed for quite some time due to the absense of one 'positive' result (lesions, bands on LP, ON, etc)....when it is obvious that all MS patients experience similar but also strikingly different symptoms. There are so few common threads I can understand why it is difficult to pinpoint, however, I feel that the standard of care for those of us 'in limbo' is terrible, since our neuro's jump to 'NO' so quickly and in turn don't really treat any of the symptoms.

I will review the websites you provided to me tonight (on a company computer, everything is blocked, so surprised I can even get onto this site). I'll also google that free evaluation thing..

I hope you're feeling a little less Fed Up, I'm trying to keep my chin up!