Recently diagnosed

[CaroleK]

Hi, I'm a 44 year old mother of two who was diagnosed in early July. I first experienced peripheral neuropathy in my feet and legs that eventually crept up to my stomach area. The neurologist first thought it was a Vitamin D deficiency and treated me for this until the numbness progressed to my saddle area and stomach and the MRIs showed lesions in my brain and spine. I have been on Betaseron since August and, now that I'm up to the full dose, I'm getting kind of unsightly injection site reactions (large reddish bruises) and, occasionally, increased itchiness in my legs and stomach area. Not quite sure if this is due to the meds or if this is just part of the MS in general. If anyone has any insight, I'd appreciate it.

I'm also loosely following a Swank-like diet (no red meat, no dairy - except for skim milk and nonfat cheeses - and, unfortunately no chocolate. Also no hydrogenated oils, mono and diglycerides, and no tropical oils). Has anyone had any luck with the Swank diet? Any other suggestions relating to nutrition/exercise? This is all still so new and I feel lost a lot of the time in trying to figure out how best to manage this. Pardon the length of this..this is my first time writing in one of these forums!

[Keepin_on]

Hi CaroleK

I was also dx'd in July. What a rollercoaster this is right?

I am on Rebif and also get some pretty and itchy injection site reactions. My arms itch more than the other areas. I use Arnica gel everyday and that seems to help. Any areas that really bug me, I try to give them a break for week if I can and double up somewhere else.

I have been doing a modified version of the Swank diet, basically, limiting red meats, avoiding gluten, limiting dairy (no milk, but some cheese), and just all in all trying to be healthier. I had some gluten last week accidentally but didn't feel anything different, so who knows how long I will last (I sure do miss some things).

I try to exercise and stretch everyday which seems to help me the most. I got hit with the fatigue (like many others) and am now trying Provigil which seems to help when I need it.

Welcome to the site! This is a great place with great people

[Bob698]

Welcome.
I'm also one of the Beta Kids, for a little over two years now.

I got the Beta raspberrys for a while. In my case it was the red blotches where I had injected but they didn't hurt. they just kinda showed up for a while.
It might just be part of getting your tolerance up. They kinda died out on their own after about 8 months in my case. Yoy could also try washing the area where you injected with regular soap and water within about 10 to 15 minutes after you inject or try using hand lotion. Nothing fancy, just a damp hand cloth or towel over the area where you used the alchohol prep pad. There's a theory out there that the blotches are caused by the Beta solution leaking on to the skin.
That brings up another idea, are you rubbing the area where you injected so the solution works itself into the tissue under your skin?
Now that I think about it, there's an experiment I should have tried when I was still getting the blotches.
I could have put an extra drop of the solution on a spot where I never injected, say the back of the arm, and watched to see if it became a blotch. My theory was that most of the blotches came from the old prep pads.

With the diet stuff, go with what works for you. I think many of us wind up tailoring our diets based on what worked and what didn't, don't be afraid to try new ideas as long as you're eating healthy.

[CaroleK]

Thanks to the both of you for your responses. Yes, it is quite a roller coaster ride but I'm trying to keep optimistic and trying a whole body/mind/spirit approach to dealing with this diagnosis. Yoga has been wonderful (the stretching really helps). I am rubbing my injection sites afterwards for at least a minute but, when I went to the neurologist today, she mentioned that I should be changing the depth setting (??) with the Beta autoinject depending on where I'm injecting. Didn't even know there wasa depth feature so now I have to call the Betanurse and see if she can come out and show me.
I am glad to have found this community. It is all so overwhelming and I don't know anyone really who has MS. Thanks for all your help...I will buy that anti itch cream and, if the depth thing isn't the issue, will start washing/using lotion on the area after injecting. Take care

[Keepin_on]

CaroleK - you know the thing the helped my injection sites the most (though I do still get reactions) was doing manual injections vs the auto-inject with my Rebif. Scary at first, but it gets easier for sure.

I don't really know anyone with MS either. Though, apparently everyone you meet knows someone who has it. Oh and they also know someone who has it and they cured it with "you name it". LOL. It cracks me up everytime.

[CaroleK]

Hi again Keepin On:
I know exactly what you mean about knowing people who know someone who was 'cured' (and they do use that word!). I just got this response from someone last week! (apparently a bone marrow transplant or something did it?) Anyway, I'm curious how the gluten free thing is going for you. I am on a Swank like diet, but am thinking of trying gluten free bc it purportedly is helpful with some autoimmune issues. Is it hard to find a lot of gf foods? Can you recommend any gf breads or pastas? Have you noticed any differences in your energy level or with MS symptoms? Just curious...any insight you could give me would be appreciated. Take care and if these injection site reactions keep happening, I will consider injecting w/o the auto injector. Happy Halloween!

[foxz71]

It's been a while...

I've been a way from the site for a while trying to figure out my life. I'm sure I've missed meeting a lot of really great people. I'm back and sure to be poking my head in every now and then to comment. I've also started putting together a resource place and journals for my own journey with this disease to add another resource place for people to visit; after all the more support we have the better, right? I'll try to place the link in my profile if I can. Hope to see you all there as well; meanwhile, keep fighting the good fight. Its good to be back.

[Bob698]

I am rubbing my injection sites afterwards for at least a minute but, when I went to the neurologist today, she mentioned that I should be changing the depth setting (??) with the Beta autoinject depending on where I'm injecting. Didn't even know there wasa depth feature so now I have to call the Betanurse and see if she can come out and show me.

Your Dr. is getting your med confused with another DMD MS med.
It happens, they're human.
That brings up a good point, however. Try learning to inject manually when you feel ready. It isn't hard to do and going manual is so much easier on us. Try searching the meds forum for Beta, some of us have written about this a lot.

For what its worth, I've never used the Betaject but I still got the blotches for a while. If you already called Betaplus, see if they'll teach you the manual stuff and the "pinch and fold" shot. Not saying its going to stop what's going on now, but you should learn it.

[Keepin_on]

CaroleK - Happy Halloween to you too! Warning - this will be a long post...

I have been doing the GF thing for a few months now and it is going good. The first month was the hardest (I also quit smoking at the same time). I think depending on where you live, finding GF foods can be really easy. I am in the Pacific NW and there are a lot of "natural food" stores. I find options everywhere. Safeway and Trader Joes have a lot of options as well. Many restaurants either has a GF menu or can offer GF options. But be careful with eating out places...you always take a risk (especially with fast food).

When you grocery shop look for symbols that say "Gluten Free" etc. You will start to search for those and easily spot them There are some resources online that give lists of ingredients to look for like "Modified Food Starch"... If you like beer, there is even GF beer now. But, I am a cider and wine drinker (both are also GF)

One thing to be careful with going GF is not to buy into all the processed GF items. They tend to be heavy on the sugars, carbs and calories. I instead now eat a lot of fruits and veggies. I find that if I go out to eat, Mexican food is my best bet. I even found an Italian restaurant near me that serves GF pasta because the owners kids have celiac disease. The restaurant next door to that serves GF burger buns with their burgers (though I try not to eat red meat as much as I can). Though I only do stuff like that once a week or less.

Annie's is a great gluten free brand. Annie's also has frozen meal options. Most of the pastas have been fine, though I prefer brown rice pasta. I think I like the consistancy better. You can GF anything now-a-days - oatmeal, granola bars, pretzels, cookies, sauces... Many cereal brands now have GF options too, like Chex. I have a new found love for quinoa too - it's great with some veggies and a GF soy sauce.

Bread is a whole other story. I have given up there at least with sandwiches. If you can make bread at home, try that. If you have a Great Harvest nearby, they have some decent bread. GF bread is just a little harder to swallow

There are some awesome blogs (Gluten Free Girl is one) that have many tips and recipes as well. There is a forum on here that has many tips too from Tara.

I also still eat dairy, I just limit it. I try and reduce my saturated fat intake and try not to eat a lot of sugar (my biggest weakness!). I knew I was in for it when I googled "GF candy" and the list came up of candy I can still shove into my mouth. You really will probably end up modifying your diet to fit your lifestyle. Whatever works for you

I haven't noticed a huge change in energy (I take Provigil now for fatigue...I also take a combination of alpha lipoic acid and acetyl l-carnitine for energy and I think it helps some). I started the GF thing while I was going through a relapse so I can't tell if I feel better because I am healing or because I am not eating gluten. What I do know is that it doesn't hurt me not to eat it and I am being healthier now than I was before going GF and before MS. I watch what I eat and try not to overdo it.

Regarding my symptoms, they come and go with my stress for the most part. I do not notice a difference really in anything symptomatic if I accidentally eat gluten or have a crappy fatty meal. I just feel better as a whole when I eat better. But, it has helped many people with MS feel better for sure.

To be honest, I always feel better the day after physical therapy or after some light exercise. Those tend to make me feel my best (if you knew me before, you would look at me like a crazy person...I always hated working out).

What I would caution about the diets is not to be too hard on yourself. If you mess up, don't beat yourself up about it. The one thing I don't like about these diets is that it puts all the pressure and responsibility on the patient. When it doesn't work for some, they blame themselves.

I would also suggest talking to your neuro about the diet. Some are really supportive, others are not, but they may have some great suggestions or advice as well.

Good luck and let me know how it works out for you!

[CaroleK]

Hi again Keepin On:
Thank you so much for all of your advice...I really appreciate it. I, too, have a sweet tooth and, yes, one of the first things I googled when I decided to try a gluten free diet was 'gluten free candy'! Thankfully, swedish fish is on the list I am trying to watch my sugar intake though because I'm finding that I'm indulging a little too much in the few sugary things I can have, which is probably not good. I do have a Whole Foods relatively nearby (I kind of live in the sticks) and a Trader Joe's about 30 minutes or so away (I really need to get up there soon anyway). I went to Whole Foods this week and got some GF bread (yes, not quite Panera, is it?) and some GF pasta, among other things. I'm going to try the pasta today.

I'm also on a Swank-like diet and was happy to have found some yummy dairy free cookies (Orton's maple cookie buttons and the lemon ones too) but, unfortunately, these are not gluten free. I bought some GF ginger snaps at Whole Foods but am not impressed...will keep on in my search for tasty gf cookies I guess

Thanks for the info about Gluten Free Girl - looks really comprehensive and I noticed there's a whole section dedicated to cookie recipes (ok, I clearly have a cookie obsession that I should try to work on!).

Hope you are doing well. Kudos to you for giving up smoking in addition to all your other MS related adjustments. I know that could not have been easy! Take care and thanks again!