24 replies to this topic

[dogmom4]

My dd25 has been having unexplained numbness in different parts of her body now for over a year...her fingertips, one side of face, one leg. It comes and goes. Several months ago she started having episodes of double vision. They would just come out of nowhere. She went to her optometrist and they said her eyes were healthy but changed her prescription because the vision in one eye had changed. A few days ago DHS started having pain behind the eye and her right eyelid looks slightly smaller, almost droopy. In the past the doctors kept telling her the symptoms were probably stress related. Today she is having an MRI and they are testing for lupus and MS (which my aunt has).
Asking prayer that they figure out what's causing this and that it's NOT lupus or MS.

[Jori]

Praying for dd, your family and the doctors.

If it's inconclusive, please have them do a spinal tap. It took over 15 years from the onset of symptoms to the time they did a spinal tap to determine my mom has MS. The treatments are

Please keep us posted.

[dogmom4]

What's the difference between a spinal tap and a spinal MRI? Do they show the same results? She's having a spinal MRI at 7:30am tomorrow.

[Cat]

Nothing to help, but I'm praying!

[The MacKinnon]

Oh man, I'm sorry to hear this. Prayers for you from here, too.

[Jori]

I'm not sure. I know the MRI's that where done were of her brain. They looked at the amount of plaque that was present. My mom was diagnosised october 2001 so technology has changed. She had kept journals and we were able to go back and see the problems started in the mid 80's.

Sorry on the phone, DH is using the desktop and laptop.

[MomM]

Praying for you all.

[Annarchy]

[Mt_Rider]

Oh Dogmom..... You knew I'd come on this thread.

You asked: "What's the difference between a spinal tap and a spinal MRI? Do they show the same results? She's having a spinal MRI at 7:30am tomorrow. "

With MS..., an MRI can show what they call 'lesions' (sp?). These can be found in the brain and also down the spinal column. That's why someone would get an MRI of those areas. They are looking for areas of CONCENTRATED damage to the myelin covering along nerve cells.

They aren't looking at individual nerve cells...that's too small to detect with MRI. Has to be concentrated areas and they will show white on the films.

[Just a note: those areas of damage are not stable. They change and are not NECESSARILY a direct correlation to quantity of symptoms. In other words, if someone shows a lot of white lesions....they don't have exactly that caliber of dysfunction of body. If someone doesn't show any...yet they might still have MS and have dysfunction [vision, numbness, miscoordination, etc]. [like me] It's not exactly proportional. [some docs disagree but....MS is tricky to diagnose, trust me!]

OK...a "spinal tap" , or the more modern term, "lumbar puncture" is inserting a needle carefully into the spinal cord to extract some of the spinal fluid. The person would then be immobilized for a period of time [like an hour or 2 ???...can't remember from mine.] Important to lay very still so that the hole seals up. A VERY mean headache occurs if you have tiny seepage from the puncture point. But they put on a "patch" and seal it up....not serious but SERIOUS pain to be avoided. Mine went fine and I lay very, very still!

In this test, they will check the fluid for debris of the MS disease. Um...getting beyond my 'pay grade' and memory for exactly where this debris comes from. The disintegration of the myelin sheath, I think.

With MS, it all goes back to the myelin sheath that coats SOME of the nerve cells. The nerve cells that do a complex job have myelin. Myelin is like a sort-of 'lubricant' [kinda bad analogy] cuz it makes the messages on that nerve cell fire quickly and accurately. A disruption in these messages by patches that are disintigrating results in ...shorting out like a flashlight.

Myelin is needed for the more complex functions. Like vision! and intentional motion. Moving arms, legs, etc. is intentional motion. The other kind of movement is like organs and breathing and such that are automatic body functions. Motions we don't have to direct. These are not myelinated and are RARELY affected by MS. Very rarely there are cases but only a tiny, tiny percentage of us.

Which is why one dies WITH MS....not FROM MS. You get that? Not generally considered a fatal disease. You just live with it. But it surely is a pain in the patooie anyway. One of the odd diseases that can get progressively worse [Primary Progressive]....or shut off and on [Relapsing-Remitting]. The two main "types".


Here is the good news....if you have to have a dirty, rotten disease...why MS has advantages. That deal about not really being terminal [or very rarely]. Primary Progressives like me hit a plataue [not spelled right! ] and remain at the same level for years. Sometimes [like me] one can actually regain functions lost.

Relapsing-Remitting types can have an episode and ....never have another one for years or forever. It's a bit odd cuz you won't know. But after an episode, you go back to normal.

AND.....the MAJORITY of folks with MS remain ambulatory [able to walk]...most even without a cane! We are depicted as fairly immobilized folk. Can be. Most are not immobilized. I'm mobile a lot and sometimes very immobile. Sometimes very suddenly.. I'm in the minority with even my part-time wheelchair use!!!!

There are a lot more details but I wanted you to hear that there IS some good news about MS.....if you reallly HAVE to have a dirty, rotten disease.


And you can just bet that I'll be remembering to pray for you and your DD. A different diagnosis that has a CURE is what we'll pray for.



...let us know how the spinal MRI went....whenever you get to hear the results..


MtRider [...you know you can PM me or even call any time! I know a bit about lupus too. ]

[Amishway Homesteaders]

adding our to the growing list!

[Jeepers]

Sending prayers!

[dogmom4]

The results came back already with diagnosis of Multiple Sclerosis. They found several lesions on her brain. Next week we'll go in with her to talk about treatment options.
She is having a really hard time with this...she's going to San Francisco State in August...and now she's scared it won't happen. Says it feels like she has a death sentence. I'm trying not to lose it...I really want to but our other kids are tiptoeing around and my dh is trying to stay positive. We really need prayer.

[arby]

I will pray and suggest she not consume diet sodas or use Equal /Aspartame sweetener. It may help, it affects many disorders like lupus and MS, and other rheumatalogical disorders. My lupus has improved a lot since I quit drinking diet sodas or using Equal in my coffee and tea in the last several years once I got that suggestion. That crud is pure poison to me. I feel it within 3 hours of drinking a diet soda. Even with diabetes the doc says if I really feel like having one once in a while, to drink a regular soda.
Stevia or truvia or sweet n low sweeteners if I dont use a little honey, in my hot drinks now...... I do a lot better in general with those.

Right now you both need to learn as much as you can about how to manage it and what it can do of course, but also encourage her to be as positive as possible. It does take adjustment but its not critical or fatal,its annoying chronic stuff.

So she doesn't need to consider it a death sentence to her potential and enjoyment of life itself. As you go along and see what is possible, if alternatives are necessary, then they can be implemented, but right now take a deep breath and rest a bit. All of you. She may just need to pace herself differently to get her goals obtained. To just believe it is going to stop you before you began, is more dangerous than the disorder and a baseless opinion that is too common and more damaging than the challenges to meet with this disorder.

[Mother]

I am so sorry to hear that Dogmom4. Please, please, go to http://www.terrywahls.com/. and check out Dr. Wahls story. She is a Dr. with MS who has amazingly reversed her symptoms mostly with diet. She went from being in a recumbent wheel chair to riding her bike again. She is working with the University of Iowa to do research and has already had one pilot study that showed excellent results. She has a couple of books out, one called Minding your Mitochondria, that spells out the reasoning behind her protocol. She is funding some of the research herself with the sale of her books. She has videos on You Tube that are also helpful and a fairly new forum still in it's infancy. She is a very real person who is not trying to make money on anyone.

Though I have not been diagnosed with MS but I DO have a very low Vitamin D level that is so often connected with MS and other auto-immune diseases and have lesions on the brain and similar symptoms. The lesions are thought to be caused by late stage lyme disease but that is controversial. Still, the effects are similar to MS so I started slowly on the diet in April and am working my way into the full program. Already I have gone from almost wheelchair bound to being able to be up some.

The reccomended diet is based on the Paleo Diet but it is evolving as the research comes in. If you do nothing else, listen to the video where she tells about her journey with MS.

You and your DD are in my prayers.

[Mother]

[Mt_Rider]

NOT a literal death sentence!!!!! NOT! NOT! NOT!


However, it is the death of a few things in one's life. The death of taking one's health and functioning for granted. That's a tough one at age 25. All your peers are full-on healthy and you're sometimes draggin' anchor.

The death of making plans without taking your sypmtoms and weaknesses into account...and making accommodations for them. But usually, you can still figure out how to get something done.

The death of one's OLD NORMAL....and the birth of a NEW NORMAL. And sometimes that New Normal is a lot more bother than the old one....but it's doable.

There can be a death of trust in one's body. That's a bit tough...and unfortunately, it's with good reason. But like all the rest, you learn to live with that uncertainty.

It births some things too...like the New Normal, adaptibility, creative wrangling of options, preplanning, and a sort of Take-It-As-You-Go type of lifestyle.



Here is some advice that may be premature but copy this and stick it somewhere to bring out when it's time.......

USE EVERY BIT OF ADAPTIVE EQUIPMENT THAT WILL HELP. IF IT SAVES ENERGY, IT OPENS DOORS OF OPORTUNITY. IF IT MAKES YOU SAFER OR MORE CONFIDENT....LESS FOCUSED ON YOUR DISABILITY AND MORE FOCUSED ON LIVING...USE IT!!!! [like cane or scooters at the big stores IF DD GETS TO THAT LEVEL. Like any visual aids - making sure the lights are correct and optimal for reading. Like a whole bunch of things ...even if it saves just a little bit of energy/focus. With that saved energy, you move forward, doing what you wish to do. Most of it is still possible.


Please tell her that San Francisco State is very likely doable. Did they say if she has Relapsing/Remitting or anything with "progressive" in the name? [ They keep changing the titles and I don't keep up that closely anymore. ] Everyone goes on with their life...get married...have kids....all of that. There are lawyers, teachers, doctors, ....with MS. DON'T believe the 'drooling moron falling out of the wheelchair' vision.
Those who have met me can tell you it's not true. ....but I had that vision too...early on.

And Stacy...HAVE YOURSELF A FIT...privately. This IS a shock and you gotta let it out somehow. BE HONEST within your family tho. That will be very important. Love her real good right now as you all adjust to this new thing...with awful potential and nearly always, less awful reality.


MtRider [....bleeding for you in the newness of this diagnosis. BTDT and SURVIVE IT DAILY!!!!!! ]

Edited by Mt_Rider, 23 June 2012 - 12:57 AM.

[Jori]

Praying continuously.

We are here for you and her and the rest of the family. My thoughts are swimming, not sure where to start, yet.

[blessedhomemaker71]

Praying for your dd.I am praying for wisdom for the doctors,cure for whatever the outcome,HIS healing hand upon her,and peace for her and your family.

[Ambergris]

The headache that follows spinal tap is from suddenly reduced fluid pressure in the brain. They can stop or greatly reduce the pain by re-injecting some of the fluid, and you can ameliorate it to a smaller extent by hydrating her...buy a six-pack of Dasani and have her go at it.

[dogmom4]

I wanted to give an update on my dd. Yesterday she had a spinal MRI and we got to see the MRI of her brain. It was worse than originally thought. She has 19 lesions on both sides of her brain, several on the upper part of her spine and one in the middle of her spine. My biggest concern is the the largest ones that are sitting right on the part of the brain that serves the eyes. Hers is not considered a mild case. I'm trying not to flip out over the fact that she was going in over two years ago with symptoms and they kept telling her it was anxiety and stress related.
Next week she will go in for 5 days of a steroid to hopefully alleviate the double vision. Then she will have to learn to give herself injections with a different med for the rest of her life.
She is still in quite a lot of pain from the spinal tap and is feeling pretty depressed about all this.
I'd appreciate it if you would please keep still keep her in your prayers.