Everyday Life With MS

Experience Tips Real Life Solutions

My Favorite MS Sites and Others Too!

Here is a list of sites that I like to use when I have questions or need information about MS:

 

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National MS Society

Web MD

Patients Like Me

Shared Solutions

VitaCost, Vitamins and Supplements

Please recommend your favorite sites to add to this list.

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11 Comments »

  1. Dear lora.I hope this email finds you well.I wanted to ask you if you follow the swank diet or proffesor jelineks recommendations? im sure that you do,but i just wanted to make sure.The diet really does make such a difference -my husband follows it and feels so much better.Take care and very best wishes to you.Suzanne

    Comment by suzanne morgan | June 20, 2010 | Reply

    • Hi! Thank you for your suggestion. I haven’t heard of the Jelineks diet. I will look into it. Thanks for the info.

      Comment by elle0568 | June 21, 2010 | Reply

  2. Hi. I’m not sure if this site is current or if I’m posting or talking to an individual. I am 25 and 6 weeks ago I was diagnosed with ms through optic neuritis. I am yet to see a specialist but with steroids I have my sight back. My question is about ms fatigue. I have always been so active but lately I have been tired and waking up this way. I have good moments but mainly I have been irritable and moody and can’t help lashing out at my amazing boyfriend. I can’t help feel that anyone gets how tired I am because my psychical appearance is no different. How do I combat the fatigue. Is there a drug to help or do you feel this way forever? Very confused. 😦 any advice would be wonderful. Sali

    Comment by Sali | November 26, 2011 | Reply

    • Hi Sali,

      I totally understand how you feel. I suffer so much from MS fatigue. When i research ways ti combat the fatigue, I have the response of “use occupational therapy strategies, take naps and rest when you need to”. Those answers don’t address the things you and I crave. Activity, enthusiasm for daily life, enough energy to write an email or comment on a blog.

      Here are some real solutions to ask your doctor about that will help you not only get through the day but to help you get back to participating in life
      Energy boosters that help me are:
      1. Adderall – even though it is usually prescribed for kids to help with ADD, it helps adults in fighting MS fatigue

      2. Ritalin – it works the same as Adderall

      3. B12 sublingual tablets – get them at vitacost.com, it is a very price competitive website for vitamin supplements

      4. Provigil is another prescription that will help you stay awake and alert

      I also lash out at those who are closest to me. I take a prescription for depression. Ask your doctor about Zoloft.

      I had to quit my job because of the fatigue and I don’t drive long distances since I fear falling asleep at the wheel. I started my own business from home as a virtual assistant to
      help me feel like a part of the world. Visit http://www.YourVaResource.com if you’re interested.

      I hope some of my suggestions help you. Please stay in touch. Ask me as many questions as you want, no matter how personal. I’ve been there, to hell and back and want to help you fight this MonSter living inside us.
      Xo
      Lora

      Comment by elle0568 | November 26, 2011 | Reply

  3. Thanks for your reply. I’m starting to sleep better though it seems a bit up and down. Yesterday my feet started tingling and now the both feel like I’ve submerged them on ice for two hours. Is this another attack or just
    A symptom of ms? I shouldn’t complain. It’s annoying. Not painful. I think the worst part about all this is I’m still waiting to see the specialist for the first time my gp seems to know very little. This must be terrible for people who have severe problems.

    Comment by Sali | December 3, 2011 | Reply

  4. Thanks for your reply. I’m starting to sleep better though it seems a bit up and down. Yesterday my feet started tingling and now the both feel like I’ve submerged them on ice for two hours. Is this another attack or just
    A symptom of ms? I shouldn’t complain. It’s annoying. Not painful. I think the worst part about all this is I’m still waiting to see the specialist for the first time my gp seems to know very little. This must be terrible for people who have severe problems.

    Comment by Sali | December 3, 2011 | Reply

    • Hi there! Sorry it has taken me so lng on to reply. Yes, it sounds like a symptom of MS. I get cold feet a lot. I hope you can get into a specialist soon and get relief from your symptoms. Sometimes the symptoms just suck! It helps to get it off your chest to people who have been there. Feel free to write anytime. Xo Lora 🙂

      Comment by elle0568 | December 15, 2011 | Reply

  5. Hi Lora,
    I’m Debbie Williamson’s sister. I was recently diagnosed with MS and was wondering about adderall. Did it give you a headache? I took it for a week and the headache was so bad I had to stop taking it. It worked well though and I was wondering if the headaches eventually went away. I need something for the brain fog/add feeling (and fatigue) and thought adderall was the answer. What was your experience when you first started taking it?

    Comment by Sue | December 12, 2011 | Reply

    • Hi there! I am so sorry it has taken me so long to reply. I haven’t been feeling well…MS stuff…mostly fatigue and loss of feeling in my right leg.

      The fatigue is such a killer. It completly knocks me out. This week I have slept all day everyday. Right now the pharmacies cannot stock adderall in our area. The fda only allows wo much to be dispensed per year per location. It seems like all of the pharmacies in our area have met their caps. 😦

      When i can get it, the adderall really wors well for me. I never got headaches from it. You may want to ask your doctor for Provigil or Ritalin. They work the same way as Adderall. Right now I am on Ritalin until the Adderall is back in stock.

      Comment by elle0568 | December 15, 2011 | Reply

  6. Thanks. I will ask my doctor for something else to try. Is there anything for the loss of balance? I haven’t fallen, but I do stumble and lose my balance quite easily. I’ve noticed that I need to concentrate on walking, especially downstairs, or else I risk running into something. When it happens all day, I don’t know whether to laugh or cry. It’s very frustrating that my body doesn’t do what I want it to!

    My sister gave me your phone number (I hope you don’t mind) so I’ll give you a call after Christmas with all my questions – I have lots! Thanks for your help. – Sue

    Comment by Sue | December 20, 2011 | Reply

    • Happy New Year! How did you survive the holidays? I am doing pretty good right now. It helps that the humidity in FLA is going away and a cool/cold front is coming through. My perfect weather.

      I stumble around my house and life like I am tipsy. I always have a bruise or battle scar somewhere on my legs. In my house, I am famous for breaking glasses and mugs. They just tend to slip out of my hands all the time. I think there might be some sort of drug for balance and tremor but I haven’t asked for it yet. Yes, I am the same way, never sure whether I should laugh, cry or just give up.

      Please call any time. MS can be so confusing and frustrating. No one can completely understand it unless they’ve lived it. I even get frustrated with my doctors no matter how compassionate they are. Sometimes I wish I had a doctor or nurse who had the disease so they knew what I am feeling isn’t an embellishment or all in my head. I have had doctors accuse me of that before. That can be very bad because for a while I just stopped telling them what was bothering me (as well as my family). Even though I look somewhat normal on a daily basis, no one truly knows the battle within.

      Sometimes, when I am not trapped in bed, shaking from tremors or have loss of mobility, I feel like my family expects more from me and forgets what’s lurking in the background. It can be very upsetting.

      Finding an outlet helps. Creating this blog has been helpful and meeting people like you online helps. I have stayed away from local support groups, sometimes they turn into a pity party.

      Happy New Year. I look forward to talking to you!
      xo
      Lora

      Comment by elle0568 | January 2, 2012 | Reply


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