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Posted: Wed Jan 21, 2009 4:22 pm
by 71jules

Hi there, I am a 37 yr old female with a very supportive hubbie and two beautiful children.
I had been experiencing some symptoms over the last couple of years but passed them off thinking they will go away.
My symptoms are trouble walking, swaying, losing balance, trouble talking finding words, short term memory, numbness pins and needles, slight loss of sensation in hands and feet at times. Room spinning type feeling while sitting. Trouble understanding conversation at times and days of feeling very unwell.
I finally went to the GP but didn't tell him everything only about half due to my fear of him suggesting MS. Well with what I told him I said something about MS and the look on his face said it all. Urgent app with Neurologist next Friday and I am terrified. My beautiful family is so worried about me and I am in turn worried about them particularly my hubbie who doesn't know what to say sometimes but I totally understand. He holds me and comforts me and that's the best at the moment.
I really felt the need to talk to someone but not face to face it is a lot easier. I had nitrous oxide at the dentist two days ago and the symptoms of trouble walking and understanding was exaserbated. Lol prob wrong spelling.
So sorry for the lengthy message but it feels good to vent the emotion. Thanking whoever reads this and I appreciate any comments at all.

Posted: Wed Jan 21, 2009 4:42 pm
by Lyon

Posted: Wed Jan 21, 2009 4:55 pm
by jimmylegs
if you are getting worse after nitrous oxide it sounds to me like a good precaution would be to TAKE A LOT OF B12 and B COMPLEX NOW. and a good kick with the vitamin E too.

1000 mcg b12 (methyl cobalamin form) once a day for a week. you get strips you can dissolve under the tongue. lunch time is a good time for that.

b100 complex take one with each meal and at bedtime for 5 days.

800IU vitamin E with each meal and at bedtime (you don't have to worry about it being fat-soluble when you only take high dose for 5 days)

i am 37 f too and i was dx'd at 34. my issues had a lot to do with nutrition so that's why it's my focus. tell me more about you, to see if what i suspect matches your actual scenario.

ms is scary, but you can take action now without waiting for the tests and all to come down.

where do you live, can you get bloodwork easily and without paying thru the nose?

Action plan for jules

Posted: Wed Jan 21, 2009 5:29 pm
by lyndacarol
Jules--As I have said to others, you are at the beginning of a long, tough journey. It is completely normal to be scared. I think it is important to determine your starting position with a thorough physical examination. Tell your doctor about ALL your symptoms, We hope you have found a caring medical professional to be a partner in this journey.

As to treatment, I am not a believer in any of the CRABs, based on my own experience with C (Copaxone), no experience with R (Rebif), a long 7 years with A (Avonex), and 4 years of B (Betaseron). In my opinion, these drugs were of no benefit to me. My doctor says, "But we don't know how bad you would be right now if you hadn't taken them."

In brief, here is the action plan I suggest to you:

First, take a deep breath.

Second, start your personal MS library with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is the good second book to have.

Third, have a thorough physical exam and ask for any kind of blood test possible (including a fasting serum insulin test--I am known at this website to be obsessed with insulin!). If you have an MRI, ask that the radiologist make a special note of the sinuses. Many with MS report sinus problems (including myself). Ask for a copy of all your test results for your own file.

Fourth, from this day forward, eat a healthy diet. In my opinion, this means removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour (in fact, all carbs so far as possible) from your diet. Taking an active role in some respect with this disease makes me feel that I have not lost ALL power.

The best to you in your journey; don't forget to share your discoveries along the way with your friends here!

Posted: Wed Jan 21, 2009 5:33 pm
by jimmylegs
light reading:
We report on a diabetic man in his early forties with a history of disabling left-hemisphere stroke and hyperhomocystinemia who developed new sensorimotor symptoms and urinary incontinence 4 weeks after prolonged exposure to nitrous oxide (N2O) related to arterial occlusive disease [JL comment: my italics. interesting to our older members, what say?] and amputation. Physical examination at rehabilitation hospital admission showed preexisting severe nonfluent multimodality language impairment, new ataxic quadriparesis superimposed on static spastic right hemiparesis, diffusely blunted muscle stretch reflexes, impaired cutaneous sensation and proprioception, diminished alternating motion rates, and impaired truncal balance. Laboratory tests revealed low serum cobalamin and hyperhomocystinemia. Magnetic resonance imaging of the spinal cord showed dorsal T2-signal hyperintensity. Treatment included vitamin replacement and comprehensive rehabilitation. His response to hospital-based and outpatient treatment led to successful prosthetic fitting. This case shows the importance of screening for and treating cobalamin deficiency before exposing patients with known risk to N2O and highlights the potential diagnostic and therapeutic challenges of subacute combined degeneration when it occurs with a setting of preexisting disabling neurologic impairment.

Posted: Wed Jan 21, 2009 6:26 pm
by patientx
First, I wouldn't start jumping to conclusions. Your symptoms could have many causes, and thinking the worst, you're only going to drive yourself crazy with worry. Even if it is MS, it's not the end of the world.

Tell your doctor everything that's going on. It's better to find the cause, than not to know what is happening. When you see the neurologist, it might help to bring a written timeline of your symptoms. But, be prepared, he's probably not going to have an instant answer for you. He (or she) will most likely order a bunch of tests, but that will narrow down the cause for your symptoms. You can mention your concern about it being MS, but the neuro should still know which way to proceed and which tests to order.

Hang in there.

Posted: Thu Jan 22, 2009 8:19 pm
by Grumpster
patientx wrote: Even if it is MS, it's not the end of the world. Hang in there.
I agree with the hang in there part. And it is for some a very mild disease. For others, not so much. I wish you all the best. Now is a much better time for the DX than even a couple of years ago. So many treatments on the horizon. good luck and God Bless!


Posted: Thu Jan 22, 2009 9:36 pm
by 71jules

Your opinions, wishes and thoughts and encouragement are greatly appreciated.

I will let you all know how my appointment goes next Friday.

Hugs to you all.



Posted: Thu Jan 22, 2009 9:39 pm
by 71jules
Was meant to read who has not is has replied, yep one of those day's.

Trying to keep positive but of course emotions running wild at this time in my life.

Our gorgeous children go back to school on Tuesday and it will be tough having my hubbie and children away at work and school after having company for the last 7 weeks.

Keep up the great work you are all doing and thank you again and I send you all a great big hug!


Posted: Fri Jan 23, 2009 6:36 am
by jimmylegs
hugs back jules, keep your chin up! another southern hemi member, hey? :)


Posted: Sat Jan 24, 2009 2:58 am
by 71jules
To everyone on this site so far that have responded to me I am amazed at the positivity of you all compared to another site I came across. This site is full of support and compasion whereas the other was so morbid and negative even reference to swearing which shocked me.

Keep up the great work everyone, until next time.


Posted: Sat Jan 24, 2009 8:21 am
by chrishasms
Gee let me guess...Neurotalk? LOL

Posted: Sat Jan 24, 2009 5:41 pm
by jimmylegs
sounds like i'm lucky this is the only forum i've ever visited 8O

Posted: Sun Jan 25, 2009 7:13 am
by patientx
I visited some other boards, but never saw anything that was real negative or morbid (even neurotalk). Though, I feel this is the best site, since people are actually trying things to fight MS, and reporting the results, good or bad.

[b]numbness of lips and tongue[/b]

Posted: Sun Jan 25, 2009 9:33 pm
by 71jules
8O Anyone have or get numbness of lip or and tongue?

This is very freaky and adds to my concern and fright, needing to take caution in talking and drinking particulary hot drinks.
As much as I try to ignore symptoms you cannot ignore this.

Hugs again