Saturday, May 8, 2010

Diana Gordon - Pre-procedure - May 8, 2010

My very first attack was 13 years ago, but who knows for how long before that, that I was feeling some effects and symptoms that I didn't recognize. I was clinically diagnosed with RRMS on July 9, 2008, after many years of misdiagnosis, including a brain tumor. Since I was definitively diagnosed, I was then on a mission to find out how I could really beat this "thing". :) I will love to know that I'm really not a clutz. LOL

I think it is wise to document how I'm feeling before I am "fixed". I really don't like using the word "Liberated", because that word is way over-used. I like to call it what it means to me. There is something wrong with my left jugular vein, and I am going to have it repaired, or "fixed". If I say "Liberated", that word almost makes the whole thing seem hokey, but it is VERY real to me.

My biological father died from complications due to MS on May 6, 2004 and I'll bet he had CCSVI, possibly in his left jugular vein, like me; anything physical in nature, can be passed down, genetically. I have it, and the odds that my lovely daughter Gessica has it, is great. I'm urging her to get tested, but she's an adult, and I can't force her to, like I could, when she was young and under my supervision. Needless to say, it scares me to death, if she doesn't; I don't want her to experience all of this, like I have.

Anyway, back to what I'm feeling, prior to my procedure, which is scheduled on June 8, 2010.

Well, I should start first, with my symptoms.

1. Numbness in both of my forarms and tingling hands (feeling asleep), which makes it very difficult to type

2. Speech is very slurred, especially when I get tired. Many words are difficult to pronounce clearly.

3. My vision is blurry. I can see, but to see fine print is very difficult and straining. I am always walking around, being quite dizzy. It's not vertigo, as I've had that; it's very difficult to describe.

4. Fine motor skills are suffering, I believe because of the numbness. My handwriting really sucks, and my typing isn't much better, although, you can read it. I had to give up my signature, because I can never write it the same way twice.

5. I call what I'm feeling, a body fist, where all of me tightens, like clenching. I can't relax and a friend gave me a perfect descriptor for it: Like the tin man.

6. Brain fog is incredible, although I fight it as much as I can, but that is completely exhausting. I forget the little things, and write check lists, so I don't forget things I need to do, but then I forget to look at my list. :/

7. The fatigue I feel is like nothing I ever experienced before this. I can't just "suck it up, because I'm a buttercup". It feels like I've been picked up by the tail, spun around and flung at a wall. It totally whacks me out.

8. My balance isn't too bad, but I'm a little off and tend to bounce off of walls unless I grab onto something to steady my balance, and I have to hold onto railings when going down most sets of stairs. I no longer possess confidence when trying to do something that requires balance or ease of movement.

9. I feel very shakey, almost nervous in nature... so weird.

10. I have difficulty swallowing and can't swallow quickly, twice in a row; I have to take some liquid in my mouth, swallow, then take some more and swallow, etc.

11. I can't cough to dislodge anything from my throat if it gets stuck there, and has resulted in my airway to be blocked on several occasions.

12. I can fall asleep, but I can't stay asleep for a whole night, although my sleep patterns have improved since being on LDN (Low Dose Naltrexone). I'm going to stop using that, after I'm finished the 7 capsules I have. I am so anti-drug, even taking that makes me feel uncomfortable, even though it is in only 3 mg dosages.

I hope I will be okay when I go off of it. I don't want to ever experience another relapse. The "body fist" is a mild relapse, when compared to other ones I've had in the past. I will not miss any of it, once it's gone. Of course, I hope it will be gone forever. I miss who I am... I've been away for a little while, but I'll be back!!

I hope to get back to work, as soon as I possibly can. I want so much to get my old career back, in CAD Design. I loved it so much, and really feel I can be better at it, this time around. :) You may laugh, but I really want to be a clean freak again... I used to absolutely LOVE to clean. I took a lot of pride in it.

I would be VERY appreciative of everything and everyone around me, because I know what it's like to lose everything, at least know what it feels to be at risk of losing everything. I want to be a contributor to society, not a drain. I want my life back, plain and simple.

I WANT IT ALL BACK!!

8 comments:

Bebedores do Gondufo said...

Very Good.

H. said...

Congrats, Diana, on having your CCSCI procedure! I hope to follow your progress on your blog (if my MSy-brainfog doesn't forget how to find you)! I was diagnosed in 1987and live in Florida, where the heat and humidity keep me a prisoner to the indoors and A/C. Getting overheated makes all my symptoms worsen bigtime. Reading words of encouraement like yours give hope to me and countless others, I'm sure.

Paul said...

Amazing results. Congrats. Can you please tell me where you had the CCSVI imaging exam and the liberation procedure and costs? Thank you.

brenda said...

Diana: You are a wonderful spokes person for ccsvi procedure. Like the last person I was wondering where you had the procedure done and what the cost was?

I am considering going to India, but feel the flight would be too much for me.

Monique said...

Hi Diana,

My comments echo the others...I am so happy for you that are able to live life again. My hopes are with you for continuing improvement and strength. Many others have asked the details of where you had the procedure. I have seen any of comments of where you had it done. It would be wonderful if you could share the details...ie. where, which doctor, which clinic, which country, etc. Thanks and God Bless.

Let it Heal said...

Congratulations Diana... I have been following the news about CCSVI for a while now and I find it very encouraging (slash frustrating). Diana, I host a talk show about health in Toronto and I'm planning to discuss MS on September 8. I wonder if you might consider being a guest?

pammi said...

Cardiac arrest is life taking disease. If instant first aid is given to the patient, life of the patient can be saved. The first and foremost aid is to make the person sit down and calm. The family doctor or treating doctor should be called immediately. If possible, rush the patient to the hospital. The garment worn should be made loose so that patient can relax.
ANGIOPLASTY SIDE-EFFECTS

ipf said...

Thanks for sharing a idea....Great post and informative
Treatment for CCSVI