Hi Denise,
Adding on a belated welcome to you. Thanks for joining us. I hope we can provide a layer of comfort to you while you get through this next step. I too had this slurred speech, walking probs, amongst other things and it's very scary, especially since you've had this going on now for years.
Did they dx you with Optic Neuritis years back w/the loss of your vision? If so, that counts toward the criteria for space in time.
I hope this Dr. is not the type to not dx you if your LP comes back clear. It should not be the sole reason to not dx you.
Bless your hubby for helping you as he does. I hope you are on your way now toward getting the meds you need for this. OUr future is much brighter w/MS since the disease modifying meds have come along.
All the best to you for Friday. If you've not already, get copies of your test results.
See you around,
Shell
You are definitely not alone, not with this bunch of really great people. Welcome and I hope you feel comfortable to stay with us through this difficult time. We will be happy to help you in any way we can.
Friday will be here before you know it and hopefully then you will have some answers. As April just mentioned, please let us know how your appointment goes and let us know how we can help.
Take good care.
Julie
please let us know how your appt. goes Friday......
hang in there.
April
Thank you to everyone who has responded.It is nice to know Im not alone in all of this.Its so frustrating knowing something just isnt right but not knowing and we all know that without that piece of paper with that DX there is nothing we can do.My balance has been so bad lately that I have come close to falling several times and fallen once .My husband helps me get up off the couch and even the toilet.He wanted to go by me a walker to give me a little more independence and the clerk suggested getting a script and naturally no script without diagnoses.My primary dr doesnt have report from neurologist and I cant reach neurologist.I have already had all of the test I should get all of the results friday.Hopefully the days of being in limbo will be over.I will keep you posted .Thanks everyone and good luck everyone.
Hello Deede,
I am a 24 year old female who started getting symptoms at age 18: double vision, bobble vision,numbness and tingling in my legs and arms, weakness in my legs and arms (to the point my legs would collapse), a weird shaking sensation in my head, shaky hands, difficult walking, static vision, and of course extreme fatigue. I also have a history of migraines and I have relatives who have M.S. and have died of it. I have had three episodes of these symptoms. The first was art 18 and lasted for 2 weeks. The second at 20 and lasted a month and the last one was in Feb. of this last year. The most severe symptoms lasted two months but it really took me about 6 months to be stronger.
My symptoms point to M.S. however my tests have turned out negative for M.S. I have had numerous blood work, MRI's and Spinal tap. My one MRI came up with three lesions in the back of my brain, however my last MRI showed that they were no longer there. They miraculous disappeared. My ANA count turned out to be 4,000 when normal is 40 so they think I might have Lupus and/or M.S. And most recently the doctors are pointing in the direction of my symptoms being caused by depression, however I am not depressed! Others think the depression diagnosis is ridiculous and another one thinks I have a mild case of M.S. So I too remain in limbo land.
Your doctor can not officially diagnose you just based off of family history. If the tests come up negative however, it is still possible that you have M.S. It could just be an early stage of M.S. and it has not yet left any permanent damage. Basically medicine has come a long way but they still do not know that much about M.S. and every person's case of M.S. can be different. Some people have more progressive M.S. which can leave them in a wheelchair and others can have a mild case where they only get symptoms now and then.
Best wishes!
Heather
Your history with your mom and other family members give you every right to be concerned - you have seen the ugly side of MS from years ago when there weren't any treatment options other than to attempt to control the pain. I had a dear aunt that I watching slowly decay from this disease over a period of 30 years, and also know the life ending problems it can cause. But that was some years ago.
I'm not going to lie and say it isn't still ugly at times, but medicine has come so far in slowing this disease and giving the brain a chance to rest rather than be under constant attack. One of the most important things you can do is learn all you can about MS, its treatment and ways that you can help (diet, rest, exercise, all of that and more!) yourself.
The DMD's that MS patients are given are truly amazing. Push the doctor to prescribe one and get started. The sooner you begin the greater the chance you have of pushing this disease to the back burner.
I hope you will come through here often to share your questions and experiences.
My heartfelt best to you,
Lulu
Denise, I think you've come to one of the best places for straight answers from caring people. I've only been here a few weeks, but have found this to be a wonderfully helpful, close-knit, yet totally accepting (well, almost totally! ;)) group of engaged people.
You need to confirm what you and your doctor suspect, because there are newer medicines available now that can slow the progression of MS. Undoubtedly, these meds are a vast improvement over whatever treatment your mother received when she first learned of her disease. I'll wager that you want a lot more than another 20 years with those three children, and they'll be thankful, too. Many other diseases, though, can make a patient seem like they have MS when they really don't. Your neuro can't prescribe a drug for a disease when he hasn't done what's necessary to confirm what he suspects. It could actually be harmful if your symptoms come from something else.
Regardless of what you find, I suggest you come back here often. There is a wealth of information available in the "Health Pages" section (look for that yellow button in the upper right of this page), and the rest of us can learn from and possibly help with whatever it is that you're going through.
We'll pray for a miracle for you, but remember: God most often works His wonders through people, and that frequently includes doctors.
Peace to you & yours.
Hi, Deede--
Welcome to the forum. That's quite a family history you have; someone should be sequencing your genomes and looking for clues.
That said, it's important for the doctor to have confirmatory signs, possibly, because if you have insurance, your insurance company's going to require that. If you go for disability, they'll require that. Pretty much anything you may need to do as a result of this dx would require that your doc has done the usual things to confirm it. The doctor is proceeding with the correct "algorithm" for making the determination. If it confirms MS, then the doctor will have the appropriate justification for starting your meds and asking someone to pay for them.
It IS possible and acceptable to do these dx's without MRI or lumbar punctures, although most physicians seem to go that route. If you have symptoms/signs that are what they call disseminated in time (i.e., have happened on two separate occasions and lasting at least a certain period of time) and are "disseminated in space" (i.e., can be traced to two separate areas of the central nervous system), then the doctor should be able to defend an MS dx; however, as I said, the usual route is with the imaging and the lumbar puncture, or with imaging and a test of something called "evoked potentials," which measures the rapidity of signaling from your central nervous system to the rest of you.
I have never heard of having pinky toes removed for balance. How bizarre.
Many folks here--including several who ultimately were dx'd with MS--have been through the "you're a hypochondriac" thing. It *****, and it's born of what seems to be an internal skepticism on the part of some MDs about their patient population. All I can say about that is, If it's MS, it's gonna make that loud and clear eventually.
If you've already had the MRI and LP, do you have your results yet? Here's hoping that you get a clear answer and don't end up in that grey, spirit-draining, morale-ebbing land we know around here as Limboland. Several of us Limbolanders have borne the accusations of hypochondria or worse. We know the feeling.
Bio