Page 1 of 2

Please read! I am scared and need advice :(

Posted: Sun Dec 20, 2015 3:04 pm
by amblafo35
Hello all!

My name is Amy and I was recently diagnosed (two months ago) with clinically definite multiple sclerosis.

I have several active lesions in my brain ...none on my spine so far...but I have developed new symptoms since. I also have positive oligoclonal bands and IG index in CSF.

Two years ago, I started experiencing severe back spasm episodes. They could last a few minutes to about 15 minutes and were extremely severe. Sometimes, the pain would get so bad that I would break out into a cold sweat, vomit, and have even passed out. The episodes were few and far between and no doctor could make sense of it. So, I rationalized that it was probably just an ulcer or something and went on with my life.

In September of this year, only 4 short months ago, I had started a new and extremely physical job at a grocery store. I was doing very well for the first few weeks. Then, I began to drop things, fall, and forget codes I memorized for the register. My fingers and arms started to tingle, but I contributed all of this to the stress of the new demanding job and strenuous training.

During this time, the back spasm episodes started happening more frequently and with longer duration and greater severity. I had done a google search and finally found a match to the symptoms-MS hug. So, I requested a referral to a neurologist which was denied because the neurology clinic thought that my simple "back pain" was not a good enough reason for an appointment.

Then, one day in late September, I woke up and the entire left side of my body was numb. I called the neurologist and they fit me in the next week. By October 28th, all of my test results had come back and confirmed the diagnosis of multiple sclerosis.

I started steroid therapy on November 10th, by November 13th I could no longer walk without a cane because of my inability to lift my left leg. My vision also rapidly declined and an optometrist confirmed damage to my right optic nerve.

I never responded to steroid therapy. My eyesight continues to deteriorate, I am now becoming weak and numb on my right side, my cognitive/memory issues continue to worsen, my nose and chin have become numb, my eye continuously twitches, and I have started losing control of my bladder. A mobility evaluation done by a physical therapist rated me at a disability score of 4.5.

I don't think I am relapse/remitting. I don't understand why I keep getting worse. None of my doctors will tell me why I didn't respond to steroid treatment. They want to do another MRI, but does it even matter? Within 4 months, I have reached a disability score of almost 5. I am scared and completely demoralized. Has anyone else experienced this? What should I do? Could I still be relapse remitting?

I really appreciate any input. Thank you!

Re: Please read! I am scared and need advice :(

Posted: Sun Dec 20, 2015 3:17 pm
by CureOrBust
I am sorry to hear of your exerience, however, the one "benefit" of your progress is that from my understanding, your "type" of MS responds very well to treatments such as HSCT and Lemtrada. Speak to your Doctors regarding these options. Lemtrada is an approved medication in many countries. In Australia it is even subsidised by the Govt.

Re: Please read! I am scared and need advice :(

Posted: Sun Dec 20, 2015 5:08 pm
by ElliotB
Don't give up hope! MS is an unpredictable illness with an unpredictable course for most.

I had a major attack 2 1/2 years ago which ultimately led to my diagnosis. At the rate I was deteriorating, I figures I had 2-4 weeks before I would have been wheelchair bound. But, the deterioration stopped, and I improved and continue to improve. While not symptom free, I am doing quite well all things considered. So be patient, you will get better over time.

By the way, not everyone responds to steroid treatment. I did not.

Again, rest assured, you will get better over time.

What should you do now? Being scared is normal, but if you take the time to learn as much as you can about your illness and decide on a course of action to help yourself, the fear will subside and you can regain control of your life.

Re: Please read! I am scared and need advice :(

Posted: Sun Dec 20, 2015 9:16 pm
by amblafo35
I think I have decided that for right now I will not pursue treatment. I don't know if I'm primary progressive or what type I have, but I do know that I can't afford the disease modifying therapies. My outlook about it right now may be due to depression....or it might actually be a logical decision. I am not sure and I get mixed reactions. I do know that the damage done is permanent and no amount of money I spend or medication I take can change that. So, I am really not sure how I should approach the topic with the new MS specialist I am seeing on the 9th. I am just completely at a loss. Losing the ability to work...much less the ability to do simple tasks like color inside lines or control your bladder...is extremely defeating. I am sure you all know that.

I guess my only question now is....can an "attack" last this long with continued progression? 4 months. I haven't read anything anywhere indicating that exacerbations last that long accompanied by continued development of new symptoms.

Re: Please read! I am scared and need advice :(

Posted: Sun Dec 20, 2015 10:00 pm
by ElliotB
"I do know that the damage done is permanent"

I read numerous times online that symptoms that last 2 years or more are permanent. I felt just as you do. But, after more than two years of persistent certain serious symptoms, I can assure you this 'fact' is simply not true (from personal experience).

May I suggest you give this device a try (they give a 30 day trial/return period). I have had some positive results. I have been using the device for 3 weeks now, primarily for pain, and plan on keeping it because I believe it helps with pain (somewhat). I seem to be sleeping much, much better since I started using it and that helps a lot. I do not suffer from depression but many report positive results in that area.

http://www.fisherwallace.com/

Hope you feel better soon. Don't give up hope! BE PATIENT. This is a serious illness and the body takes a loooooooong time to repair itself.

To be clear, I am very proactive with my own treatment naturally (I do take Copaxone). I do spend most of my day caring for my health.

Need another success story of someone who was really, really, really in a bad place health wise and came back to 'life' rather successfully? Read "The Wahls Protocol" book, by Dr. Terry Wahls. And might I further suggest that you follow her protocol.

Re: Please read! I am scared and need advice :(

Posted: Sun Dec 20, 2015 10:10 pm
by amblafo35
Permanent axonal loss....permanent damage. These are unfortunate truths.

Re: Please read! I am scared and need advice :(

Posted: Sun Dec 20, 2015 10:30 pm
by ElliotB
Did you have some kind of accident or is the damage from your MS? If from MS, how do you know for sure that it is permanent?

Re: Please read! I am scared and need advice :(

Posted: Sun Dec 20, 2015 10:54 pm
by amblafo35
Well, first, my neurologist basically told me it is permanent. One lesion was extremely large and active crossing the juncture between the right and left hemisphere while mostly affecting the left. This has caused me to lose the ability to use my left leg. A lot of MS patients will lose the ability to walk, receive steroids or otherwise go into remission and regain most or all of their ability. That's called complete recovery from relapses. However, not only has my left leg not regained function...likely meaning there has been complete axonal loss keeping my brain from communicating with it...I am now slowly losing the ability to use and feel my right side. Also, almost 99 percent of patients with optic neuritis make complete or near complete recoveries within 4 weeks of steroid treatment. My eyesight has gotten progressively worse despite treatment which, again, indicates incomplete recovery which is characterized by functional impairment that has not improved or has worsened. My doctors also believe I am continuing to develop new lesions due to the new symptoms that suggest involvement of numerous other cranial nerves.

And, of course, we know DMT's don't reverse damage already done and the brain does not have the ability to repair axons that are completely destroyed. So, it isn't 100 percent certain that I won't spontaneously wake up one day and be able to use my legs and eyes again like I used to...but it is highly unlikely.

Re: Please read! I am scared and need advice :(

Posted: Mon Dec 21, 2015 12:00 am
by NHE
Hi Amy,
You might wish to read Dr. Norman Doidge's book "The Brain That Changes Itself." It's a well-written discussion on neuroplasticity.

http://www.thisisms.com/forum/reading-n ... c4974.html

Re: Please read! I am scared and need advice :(

Posted: Mon Dec 21, 2015 2:44 am
by ElliotB
“Whether you think you can, or you think you can't--you're right.”


― Henry Ford



"my neurologist basically told me it is permanent."

Mine told me lots of 'stuff' too, and 2 1/2 years later I can tell you she was wrong, wrong, wrong. The bottom line is the doctors don't know anything for sure.



A lot of MS patients will lose the ability to walk


Many will, but many as well won't. My personal belief is that many who lose the ability to walk don't necessarily have to.


"...receive steroids or otherwise go into remission and regain most or all of their ability."

Yea, yea, I took two rounds of steroids and they had no effect. I was 'doom and gloom' as well at the time. Yet hard work and persistence has paid off.


"Also, almost 99 percent of patients with optic neuritis make complete or near complete recoveries within 4 weeks of steroid treatment. My eyesight has gotten progressively worse despite treatment which, again, indicates incomplete recovery which is characterized by functional impairment that has not improved or has worsened."

I have had ON since I was first diagnosed and still have some effects but the ON is still improving to this day.


"My doctors also believe I am continuing to develop new lesions due to the new symptoms that suggest involvement of numerous other cranial nerves."

Again, the bottom line is the doctors don't know anything FOR SURE. Nothing is written in stone. What are you doing for your health to help stop inflammation in your body?


"... we know DMT's don't reverse damage already done and the brain does not have the ability to repair axons that are completely destroyed."

It was believed until recently that mylin could not repair itself, but it has been discovered that mylin can, over a period of time (8 years) can actually repair itself. The body is amazing in every way, and 'they' just don't know for sure. There are still some options open to you with regard to this. Don't give up hope!


"So, it isn't 100 percent certain that I won't spontaneously wake up one day and be able to use my legs and eyes again like I used to...but it is highly unlikely."

Again, I invite you to do some research/reading on Dr. Terry Wahls who was wheelchair bound for years and is now leading a somewhat 'normal' life without the need for her wheel chair. She even rides a bike! (she was my inspiration to start riding a two wheel bike again which I amazingly can do - I had bought and used a 3 wheel bike because I never thought I would be able to ride a regular bike again - but I can and do!!


A final quote:

"If it is to be, it is up to me."

William H. Johnsen

What have you/are you doing for yourself with regard to your health?

Re: Please read! I am scared and need advice :(

Posted: Tue Dec 22, 2015 1:45 am
by NHE
amblafo35 wrote:I have several active lesions in my brain ...none on my spine so far...but I have developed new symptoms since.
Speaking of plasticity, the brain has a much higher degree of plasticity than the spinal cord and is therefore much more likely to compensate for damage caused by lesions than the spine. As such, I would not rule out the possibility of some degree of recovery of function.

In the extreme case, one can even get by and thrive with only half a brain.
http://www.pbs.org/the-brain-with-david ... y-cameron/

Re: Please read! I am scared and need advice :(

Posted: Tue Dec 22, 2015 2:24 pm
by Scott1
Hi,

I think we should start this again. Everyone here is right. The worst thing to do is convince yourself nothing can be done.

Apart from the tests that confirmed your diagnosis what else is wrong with you? Did your doctor conduct any tests for underlying infections, any tests for nutritional deficiencies or any blood tests. What did they show?

MS has a highly variable set of problems because we often have other issues along side.

Facts will always be preferable to guesses but to know where you stand you need to be tested. So where are you now?

Don't guess and don't imagine just look and look and look again for what else is going wrong that you end up blaming on a disease that has no solid boundaries. Knowledge is everything.

I hope you have a friend who will help you through this phase but we will try to help if we know what you have found out.

Regards,

Re: Please read! I am scared and need advice :(

Posted: Sat Dec 26, 2015 3:56 pm
by amblafo35
There is absolutely nothing else wrong with me. The ophthalmologist says all of my worsening visual issues are directly related to the destruction of my right optic nerve that is visible upon dilation. My CSF labs and serum labs drawn during my initial diagnosis ruled out infectious disease, liver disease, endocrine disorders, kidney disorders, blood disorders, and those plus an EKG ruled out underlying cardiac issues. All electrolytes and hormones are within normal range. I had to go to the ER last week because I got so bad after an active day that I was not able to stand on my own, could barely see (but that started as soon as I woke up), and I developed tremors so bad that IV Xanax did nothing for them. I was severely dehydrated due to my recent lack of appetite and fear of drinking too much and not reaching the potty before I pee myself (which has now happened on almost a daily basis). My labs they drew in the ER were normal and the 2 liters of IV fluids they gave me only aided in lowering my rapid pulse. They told me there was no sense in admitting me because the only thing they could do would be burst steroids and I wouldn't respond to them. They also told me I was likely going blind at this point and the worsening of my ability to use my legs and control my bladder indicates a high possibility that I will bEcome paralyzed from the waist down.

I have an odd and rapidly progressive presentation. It has confused many doctors so far. So, I have appointments with two different MS specialists this coming month. I want to discuss lemtrada and stem cell transplant. Maybe even short term chemo. I just hope something can stop it from getting worse. I have another MRI in 3 days. I'll get the results the next day. I'm scared of what they will find.

Re: Please read! I am scared and need advice :(

Posted: Sat Dec 26, 2015 5:45 pm
by Scott1
Hi,

Ok, so you know what your amino acid levels are, you know what your uric acid level is, you know what your B12 level is, you know if you have an EBV infection, you know if you have a mycoplasma infection, you know if lyme or babesia or borellia have shown up. You have done a fecal test for pathogens in your lower bowel. You know you have been tested for NMDA antibodies. Is that right?

Your pulse is rapid. What is your blood pressure now? What does your heart feel like? Does it flutter or thump?
What does your mouth taste like. Is it slimy or metallic or normal. Is your tongue pink or covered in a coating that doesn't go away?

I think you need to take charge of this while can. The doctors have done nothing but tell you they are at a loss.

I have never been to an MS specialist. I have seen plenty of doctors, plenty of neurologists, cardiologists, professors or rehabilitation experts. I have never ever seen an MS specialist. I really don't know what one is. If you haven't got the tests I suggested above then, in your case, get a check for NMDA antibodies first.

Regards,

Re: Please read! I am scared and need advice :(

Posted: Sat Dec 26, 2015 6:45 pm
by lyndacarol
Welcome to ThisIsMS, Amy (amblafo35).

In your initial post, you stated that when your test results came back, they "confirmed the diagnosis of multiple sclerosis." There are NO tests that are definitive for MS; there are NO tests that can confirm the MS diagnosis.

Be aware that steroid therapy can actually cause some problems; specifically, steroids deplete vitamin B12 – actually causing a deficiency in someone with a low B12. High dose steroids also people who have been in wheelchairs (ElliotB has mentioned one: Dr. Terry Wahls, who no longer needs her wheelchair), who have had disabilities for YEARS, who have regained their abilities, whose brain lesions have healed… NO ONE can predict how your condition will go.

In all the labs that you mention, I do not see testing for nutrient deficiencies. Your symptoms are consistent with conditions you listed, but they are also consistent with some nutritional deficiencies.

In addition to Scott1's suggestions, which include testing for vitamin B12, I encourage you to ask your GP to test your vitamin D3 level. I have read that this is the most common deficiency. (Do not take any supplements before testing since this will skew test results. AND request your own copy of any test results.)

And this especially infuriates me:
amblafo35 wrote:They also told me I was likely going blind at this point and the worsening of my ability to use my legs and control my bladder indicates a high possibility that I will bEcome paralyzed from the waist down.
In fact, it may be time for you to assemble a whole new medical team – doctors who are interested in being "disease detectives."