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Sharing the journey with MS... 
This blog is hopefully going to be another venue for all things related to my life AND having the hard-to-say “multiple sclerosis”. So, if those two topics were put into a Venn diagram, it would mean that I will generally write about the shaded part of those intersecting topics. But since my life with MS basically IS my life, what will be excluded?
Hello Donna, Thank you for all your writings, I, like you, had a vein ballooned open -ed by Dr Meyta in Sept. 2010. A follow-up in Nov. 2011 showed it had collapsed and am scheduled to have a stent put in on Dec. 6th, 2011. I have been diagnosed w/MS since 6/2007 and would love to comunicate more with you .I pick up my sword and sheild everyday and battle this pesky auto-immune disease. I’m also a big advocate on raising my vitamin D levels.
Hi Tom,
By now you’ve had your second procedure and I’m hoping you have had a successful stent placement under Dr. Mehta’s expert hand. What kind of symptoms are your main ‘dragons’ that you are using your sword and shield against? 😉 I also get my Vit D level checked and have had a difficult time getting it past 35, despite 5000iu/day and getting out to get some sun everyday throughout the summer. I’m sure Vit D is a major key to the puzzle and often remind my friends, even those without MS, to take their D3! Thanks for reading and commenting!
Great Blog Donna, I finally got on.
I love reading your columns in the MS Chronicle. For a while, I couldn’t figure out whether you were a man or a woman! I’m glad to know you have your own blog. And I got right on, thanks to the link form the Chronicle. I can identify with your sister’s experience with the neurologist. I was first diagnosed by a family practitioner, who informed me casually “It looks like MS” before doing even a spinal! By the way, it was my very first visit to this family practitioner. He really did not feel it necessary to even refer me to a neurologist, but I insisted on a second opinion. For several years after that initial diagnosis, he told me on almost every annual visit that I didn’t need to worry about MS – that if I really had it, I would have far worse symptoms than I did. I was diagnosed in 1983 and never had an MRI until 2000, when I told an understanding and very conscientious FNP that I thought I did indeed have MS. Turns out I was right! Thank God, my symptoms have continued to be very mild. My niece in Mass. was also diagnosed several years ago. She is treated in Boston. What a difference! After her diagnosis, I started reading more about current theories and treatments. I can’t believe how much more is available now through people such as Annette and Tessa, the Internet, and last but not least, the “drug” companies.
Please continue your writing. When I was first diagnosed, I just wanted to talk with someone else in the same situation, and there was no one available for me in my area. I totally agree, support from others is a huge help! Lurena
Donna – This is so cool! I am glad that I finally remembered to check it out. I can’t wait to check out the “brain games”. Hope to see you Tuesday!
Hello Donna,
Sorry it took so long to respond, Your e-mail got forgotten along w/the masses of e-mails I got in December. My stent procedure for my collapsed vein failed, but he did reopen my 2 other veins that were not opened all the way. He’s gonna put a stent in my neck directly, instead of going up thru my body. 3/12/2012 is my appt. w/Dr Meyhta for that procedure. My sword and shield reference is 2-times a week I see a chiropractor that follows the ABC chiropractic practices. Dr keithkeenan.com is his name. I also drink, 4-times a week a qt of a green smoothie made of green leafy organic veggies mixed w/some fruit , so it doesn’t taste like a garden. I drink it right down so it does challenge my bladder for the following 2-4 hrs. I have also added a daily multi-vitamin, 2,000 units of Vit. D3/daily, 1-aspirin and a 50,000 prescription of vit d2 once a week. I also eat as much as I can of this gluten free oats Granola that is mixed w/verious heathy nuts and seeds. It is delicious and has healthy fat that should help my body absorb the vitamin D.
I’m sorry that your stent couldn’t be placed. That’s the same thing that happened to me, and I will, at some point, have a vein graft in my neck. Will you have a stent or a graft put in your neck directly? I never heard of the ABC chiropractic practices but will look that up. I have increased my greens and drink a green drink, but I don’t juice it myself. I’m wondering why you have a large dose of Vit D2? I love granola….what’s the brand you eat? Don’t forget to let me know how your March surgery/procedure goes, ok? Thanks for reading!
Hey Donna,
He said he is gonna make a small incision in my neck and put the stent in. I’ll see on 3/12. Whatever Dr Meyta wants to do I’ll go along with. I have faith in him. The granola is home made by the woman who was making my geen smoothies. Unfortunately she closed down the first week of Jan. so now I’m shopping around for another Green smoothie to my nutritional expectations. I have the granola recipe, if you want I will forward it to you. Something I forgot to tell you was that 2-3 times a week i use these neuromuscular stimulaters from the bioness company out of Pasadena. I wear a cuff on my knee that zaps a sensation down my schin and helps w/my foot drop. It hurts and after 3-years I have not built up a tolerance to them, but it is keeping my calve muscles strong. I had back surgery in 2004 w/screw a steel rod insertion at L-4/L-5 so walking is a slow and painful process. I use a cane and walker to get around.
Talk to ya soon, Thanks for replying
Tom Leone
Hi Tom,
I would love the granola recipe! Thanks. I’ve seen the Bioness demo but was unaware that it’s painful shock isn’t something that you get used to. Ugh. Toobe bad you lost your green smoothie lady—best of luck finding someone to replace her. I also have faith in Dr. Mehta and look forward to his help for a better quality of life. Best of luck on the stent placement in March! I hope it improves anything that needs improving. I think keeping a journal of daily changes and big accomplishments after CCSVI procedures is a burden that falls on us as ‘pioneers’ and I hope you will do that too. Keep fighting!
Hi Donna,
Let me know where I can forward the granola recipe to. I found someone else to make my smoothies. I can put it on your blog if you want or just forward it to a personal address. All these drinks, vitamins, granola and eating better are making me feel better, but I’m still not walking any better. My right leg is still weak. Balance issues seem to be getting better thou so I guess I’ll just have to continue on this path. It took alot of years for me to get like this and its not an overnite fix.
Hi Tom,
Can you post the granola recipe here in a comment? I can copy and paste it to an entry after I sample it. 🙂
Keep going with all the supplements etc….only 6 more weeks til Dr. Mehta does his magic and you want to be at your best!
Do you have a recuperation plan in place for after the surgery? Are you doing any physical therapy? I think that’s one of the things we need to do…whether at a gym, in a pool, or at home. Years of disuse or misuse have altered our muscles so we need to reverse that too. Keep up the good things you’re doing and stay strong in the fight!
Hi Donna, I’ll get that granola recipe to ya soon. I had my venogram done on monday 3/12 w/ Dr Mehta. He repared the vein that was totally colapsed in my neck. He worked directly on my neck while I was awake. It took an hour of probing and prodding, but the end result was that my vein was stinted and opened up 100%. I’m feeling better already, but my neck is still sore. I’ve got a MS event from 5-8 tonite at the Holiday Inn in Utica. I’ll talk to ya soon. Tom
Hey Tom,
Just hearing of this makes me think of the saying, “No guts, no glory!” What do you mean Dr. Mehta worked directly on your neck? Did he put the catheter in there? Interesting!! I hope this works and stays 100% open!! Are you on a blood thinner now, and if so, for how long?
My appt with Dr Mehta is in May and I look forward to hearing how you’re doing along the way til then.
Wow, awesome!
Yes Donna, he coverred my face and sedated me, but I was still awake. He put about 2″ of stints in the vein. Its opened up now and they will check it on June 11th. I have 100% faith in Dr Meyta. He usually can do the procedure from the groin, but because my vein was so collapsed he wanted to work right at the neck. it took him an hr. Lovanex for 7-days. Shots in the stomach and cumidun for at least 3- months
How are you feeling? Notice any differences? Did you stay overnight in the hospital or did he do it at the Pavillion office?
Tom, all I can say is Whoo-hoo!! Dr. Mehta is a rockstar!!! So happy for you and wish you a free-flowing FULL recovery!
Tom,
I was wondering if I can find you on facebook to ask some more questions (if you don’t mind). Thanks.
no. I’m not on face book. Joined once and got inendated by 200 messages the first week and it turned me off. Maybe we can talk on the phone. The old fashion way
Haha! The old fashioned way! What a novel idea!
Hi Donna, I’ve had noticeable improvements in my balance. I can stand and brush my teeth w/out holding onto the sink and I made an omelet the other morning and was standing at the counter, not leaning and holding on. Dr wanted me to give a full week of rest, and I did. Now I’m back to riding my bike and lifting weights. I’ve also felt some new strength in my right leg which is my weaker. One bummer is that I’ve been outside this week soaking up some vitamin D3 and I have to have a towel and ice bucket to cool me down. I didn’t the first day and had to call for help to lift my legs up the steps into my home. I Love these summer tempsin March, but the heat doesn’t like me.I haven’t forgotten about the granola recipe. I promise I’ll get it to ya. Are you doing any of the MS Walks ?
Hey Tom,
Thanks for telling me a bit more about your improvements—they seem like some definite improvements in quality of life for sure! The warm temps are throwing us all for a loop, not just the trees! Heat intolerance is like a mean trick after we make it through a winter straining to spend time outdoors….then Blammo.
I don’t walk for the NMSS, but walk and volunteer for a local CNY group called MS Resources of CNY. We have support groups, Christmas dinners, speakers, fun events like our annual INDOOR picnic.
If you want, send me your email at: dmarromano@gmail.com
Keep getting stronger and flowing free!
Hi Donna, great write-up as usual in spring Chronicles. Met w/Dr Mehta last week. The stint collapsed. He said they usually don’t hold up in veins as they are not as strong as arteries. Next step is for him to take a vein from my leg and put it in my neck. I can’t wait as my negative symptoms are only getting worse. I can no longer walk w/a cain and depend on walker or scooter to get around. Hope all is well you. Since I stopped those green smoothies in Jan. my D-levels are back down to 31 from 37 last Aug and 35 in Dec.2011.
Take Care,
Tom Leone
Sorry about the collapse and subsequent symptoms. It’s a common thing I’m hearing and I think the doctors are scrambling to get a handle on what’s next for us. My next step too, is the vein graft/bypass and I’m nervous about it at this stage of the game. But I trust Dr. Mehta! (Did you know he and his team were in the news about 6 mos ago doing a trans-aortic valve replacement? It was an historical moment!)
As for your D levels….you’ve got to get back to the smoothie! I don’t know if you get outside at all, but try to get some sun every day. I think it’s what finally got my level to rise to 40. That’s the highest it’s ever been, and prob was like that because I went to Florida for two weeks a month before the lab was done. I think there is a missing link about our ability to absorb or manufacture Vit D.
Take care. I’ll be back to blogging any day now.
Don’t be nervous Donna. You’ll be in great hands. When he told me about the procedure, he said he wanted me to think about it. My instant response was “when can we schedule the surgery”. I can’t wait to reap the benefits of my veins being open 100%. I think CCSVI is a bigger part of the puzzle to healing the negative symptoms of MS than the experts even think it is.As far as the smoothies go , my sister gave me her Ninja blender so I’m gonna start making my own. I’ll have to tweak them, but I’ll get them right. You just keep thinking about the positives of CCSVI and that will keep ya calm. Talk to ya soon, Tom Leone
Dried Cranberry and Almonda Granoloa
1/2 cup Gee (clarified butter)
1/2 cup honey
6-cups gluten free oats
1-cup coconut-shredded fine
1- 1/2 cups finely chopped almonds
2/3 cups wheat germ
1/2 cups sunflower seeds
1-tsp cinnamon
1/2-tsp sea salt fine
3/4 cup dried cranberries
3/4 cup raisins
3/4 cup walnuts finely chopped
3/4 cup cashews finely chopped
Warm oil and honey in large pot. Stir together til emulsified, then add everything else. and mix. Spread a thin layer on a cookie sheet w/parchment
paper and bake at 350 for about 10 minutes. You might want to stir it around and put it back in the oven for a few minutes.
Hey Donna, Here is that recipe I told ya about. Also got my Ninja blender set-up and started my own Green Smoothies. Red Leaf Cabbage and blueberries. YUMMY
Tom Leone
Thank you, Tom. This granola recipe sounds absolutely decadent. I wonder why you use gluten-free oats if you add wheat germ? In any case, I look forward to trying this—seems just right for fall gift-giving too!
Now, I really need to start posting on this blog!!!! (now=the loosest sense of the word)
Hi Donna,
It must be overwelming for you to keep track of all your blog contacts, but I actually discovered you on the MS Chronicles newsletter. I always look forward to reading “Romano’s Point of view”. The gluten free oats are just better baked and you can leave out the whet germ if you want. I have been having alot of trouble w/this summers heat. I carry around a cooler bag constantly w/ice water and a towel. If I am unprepared or underestimate how hot it is the sun will turn my back into Jello and take away my legs right from underneath me. I’m still waiting for Albany Vascular to schedule my vein replacement surgery. My contact there has told me that they are working on a whole new form to apply for this procedure w/insurance companies. I guess we are on the cutting edge for CCSVI, which still isn’t approved in the USA. If it was to be approved alot of Pharmacutical companies would loose money. I guess its Tysabri every 4-weeks for the time being.
Take Care + Talk to ya soon,
Your Fan,
Tom Leone
Tom, the heat has kicked my legs out too, but so far only figuratively speaking. Mostly I hide out inside–and sometimes that feels like the world is passing me by!.
I have friends who are doing well on tysabri but it is one of the drugs I fear the most. I hope our other answer comes through soon so you don’t have to be in danger of PML.
Your co-pioneer-to-be,
Donna
Hello Donna,
No word from Albany Vascular yet about my vein repair. Have you heard anything? Katie is my contact from the Pineview location. The heat in Utica has been challenging. Have to bring my ice bag and towel w/me where ever I go. When its 90 I even have to have it around my neck while I’m driving. The A/C works, but not enough to keep my body temp from rising. I’ve been working out as much as I can. Up to 30 minutes at least a day on the bike, dumbell weights and even have a 4# sand ball that I have in my hands all the time when I’m watching TV. Of course the Green smoothies are a daily part of my regimine. I can’t let this stupid Auto-immune disease win.I feel if I am in good shape when Dr Mehta repairs my vein then I should be able to start walking better. Hope all things are good w/You.
Your # 1 Fan,
Tom Leone
Hi Donna,
Hows everything going. The summer heat really kept me around A/C most of the time. Glad to see the fall temps settling in. Still no word from Albany Vascular. I don’t think Dr Mehta can do the vein transplant procedure until CCSVI gets approved in the US. I can’t think of any other reason for the delays. There must be some kind of glitch w/the insurance company’s for the surgical procedure to get approved. Any how I have been diligently working on raising my vitamin D levels. My blood test from last week showed my D is at 48.91. I’ve been taking a weekly dose of vitamin D3,50,000 units once a week. I’m also taking 2,000 units daily of vitamin D3 from a company called Metagenics. I also drink a scoop of an organic veggie powder daily from the same company. To add to my oral regime about 3-4 times a week I load up my Ninja blender w/Kale or some leafy veggies and drink away. I’ve never had my D-levels in the 40’s since i’ve been checking them. Anyhow, I hope all is well and keep up the great articles in MS Chronicles.
Talk to ya soon,
Tom Leone
Hello Donna,
Just wanted to give you some updates. Not sure if you check this site any more. I just had my vitamin D checked on 1/24/13 and its up to 57.5, so i guess I’m on the right track. I’ve also contacted Albany Vascular and there actually waiting for a artificial vein to be manufactured to use to repair my collapsed vein in my neck. Hope all is well.
Tom Leone
Hi Tom,
It seems like I don’t check this site…I have let a lot of time go by between checks. But here I am again! Great news about Vitamin D! What have you done to get it up? A stronger supplement? More greens? A vacation to someplace warm and sunny? I am having a hard time getting mine up past 38.
I see Dr. M next week—the first time in 8 months. Looking forward to discussing some new developments in my world and see if he can help. Someday maybe he will. (you and I will be together on the waiting list for that artificial vein). Thanks for stopping in, and keep fighting, Tom!
How Ya doing Donna,
I’ve made it my mission now to get my D3 Levels up to 80. I’m taking supplements and making my Green Smoothie 2-3Days a week. I will make a 4-glass mixture and drink it down instantly. I always do it first thing in the morning when my body is starving for nutrition. Everyday I have a teaspoon of this Phytoganix Metagenix {brand} and mix it with a glass of water. It is a organic superfruit and green powder drink mix. I also as follows On thursday I take a 50,000 unit prescription of D3. On Fri/sat- i take a 5,000 unit. D3 of metagenix . Since Jan-Blood test results I have increased my Sunday/Monday dosage to 10,000 units. 5 in the morning and 5 at night. Then just 5 on tue/wed.
Talk to ya soon.
Tom Leone