NEW... Confused... Scared... Broke... need advice

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NEW... Confused... Scared... Broke... need advice

Postby jayman » Fri Mar 07, 2014 12:05 am

Hello Everyone,

I posted 2 or 3 times before, but never here because I don't know what's wrong with me. When I had my 1 and only attack it was 2002 and no one else in the family had MS. That changed about 6 years later. I now have a 1st cousin who has MS. A year ago he was put on Adderall. I asked why. He said a certain neurologist who has MS himself realized Adderall can help MS. I asked why again. I was told MS causes extreme fatigue in some people, as well as a loss of cognitive functions. Such as memory and the ability to think logically. In the past 4 years my fatigue has become exhaustion, memory loss gets worse, and I can't make decisions anymore. I'm a 61 yr old man with a collage education and I always had an excellent memory. But no more.

I wasn't dx with MS. I looked up what the neurologist in 2002 put as a dx and he wrote Demyelinating Disease. I have damage in my spine, and the white spots on my cranial MRI. I have a lot of pain in my right arm. I also have loss of tactile sensation, and loss of use to do things like write clearly. My Right Hand also shakes.

One big difference between me and a person with MS is where MS causes the almost constant tingles, I have almost constant pain. Due to the pain I was put on Vicodin in 2002 and in 2004 I was put on Buprenorphine aka Subutex. Not Suboxone because I'm allergic to the Naloxone in Suboxone. I did well with the Name Brand Subutex, but the company stopped making it in 2010. Teva makes it but I can't always get it, and the Roxane brand just doesn't work.

But at almost the same time I was put on Subutex I was given Provigil for fatigue. I can't sleep and then I can't stay awake in the day. I also have extreme clinical depression. I also have no immediate family and 1 or 2 friends. I'm almost homeless.

I live on the East Coast where Hurricane Sandy tore us apart. Until that happened I never took Provigil daily. I used it 3 - 4 times a week. I was fine like that. But after Sandy we had to rebuild. We all did what we could. That was when I started taking Provigil almost daily. But I don't get enough to take them daily. I have big problems with my Docs because they think I take them for fun. But they aren't fun. They relieve the constant exhaustion, and so yes, I feel better.

Ever since I found out many neurologists are using Provigil or Adderall for MS I feel I have support for saying I'm so exhausted I can barely go up and down steps. I also see a great improvement in my cousin's functioning since he was put on Adderall.

I'm wondering how many of you suffer from debilitating exhaustion? I can't even keep my apartment clean. I'm too exhausted. And my Docs don't really believe me. The pain in my right arm is also a problem. And sometimes the pain goes down my right leg. When I compare my symptoms to my cousin's, his tingling = my pain. I can't live like this. I'm not living like this. I'm alive, but I'm not living.

How do the rest of you cope?

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Re: NEW... Confused... Scared... Broke... need advice

Postby jimmylegs » Fri Mar 07, 2014 7:52 am

hi john sorry to hear you're dealing with all this :S

have the docs referred you to any nutrition specialists, or done any testing themselves to rule out the possibility nutritional causes of pain, demyelination, fatigue, or neuropathy?

there are a few nutritional issues ms patients do need to be wary of, that are only sporadically addressed in mainstream medical care.

if your docs aren't doing due diligence in that arena, there are lots of members here who can help with info and support :)
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: NEW... Confused... Scared... Broke... need advice

Postby CaliReader » Fri Mar 07, 2014 12:04 pm


I would go back to a neurologist and get another set of mri scans. If a neurologist diagnoses you with demyelinating desease, that means you are suspicious for ms. There are other demyelinating diseases, but they are a lot more rare. MS is the most common problem in that category. Another set of scans and possible a spinal tap should answer the question.

My experience was that before diagnosis, doctors treated me like a nutcase. After diagnosis, I'm treated with respect compassion and given great care. Also pain is common in ms, not just buzzing or tingling. I hope you find the help you need.
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Re: NEW... Confused... Scared... Broke... need advice

Postby lyndacarol » Fri Mar 07, 2014 12:41 pm

John, my suggestions remain the same as when I responded to your post in the Undiagnosed forum:


Dr. Amy Myers, M.D. on gluten sensitivity: ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases

Recent study showed that 56% of people with migraines had gluten sensitivity; gluten-free diet resolved the migraine problem.

Fatigue and iron deficiency (which is marked by fatigue) are often the first symptoms listed with wheat/gluten sensitivity. I think this is one of the first things to be screened for. Gastrointestinal problems are not always part of gluten sensitivity, but with a history of GI problems, you may be a prime candidate.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: "Insulin – Could This Be the Key?"
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Re: NEW... Confused... Scared... Broke... need advice

Postby jayman » Tue Apr 01, 2014 12:33 am

Hi Everyone,

I'm sorry I didn't respond sooner. One of my biggest problems is I don't have the medical insurance to do what you all suggested. I frustrate myself and my PCP because he gave me a neurologist to go see, but I can't afford it. But I thank you all for responding.
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Re: NEW... Confused... Scared... Broke... need advice

Postby want2bike » Tue Apr 01, 2014 5:41 am

Let Dr. Bergman explain autoimmune disease and what you can do to feel better. Give his treatment a chance. You have nothing to loose and you could get your health back.
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Re: NEW... Confused... Scared... Broke... need advice

Postby Manders8643 » Mon Apr 07, 2014 6:47 pm

Hi John.
I'm newly diagnosed with MS. I had been having 'flare-ups' for the past 2 years, I just didn't know it. I didn't have health insurance & I was, and am, a single mom of 2 very active kids. I didn't have time to deal with doctors to find out what was going on. I figured it was just stress and that eventually it would get better. Over the past year, I started having trouble walking without running into anything and everything. I had entire weeks of being what my friends and I call, 'stuck on stupid'. I still refused to go to the doctor. It seemed like my life was so busy that I didn't have a choice. Back in early September, I was sitting in a meeting at my brand new job and fell off the desk I was sitting on. Literally fell off sideways. I didn't even realize I was falling, I was just suddenly on the floor. I was shaking from head to toe and I couldn't get myself up. My co-workers were all talking to me & helping me into a chair & I realized that while I recognized the sounds as language, the words held no context. I couldn't understand a single thing they were saying. What I didn't know at the time is that I couldn't talk either. The next 2 weeks of testing and CAT scans and MRI's and blood tests were torture. MS certainly wasn't what I was expecting. I knew absolutely nothing about MS.

The MS diagnosis is something that I'm still trying to process, but I am so thankful that I finally have an answer. There are so many resources available to help people with medical bills now. Please do not let your lack of insurance prevent you from going to a doctor. Please don't let your busy life prevent it either. The stress that you are under now only makes MS worse, as it does for any medical issue, but for people with MS, extreme stress could mean the difference between walking one minute to crawling the next. The testing that you need to have done will be stressful. The hurry up and wait to get the results was excruciating for me, but the information I have gathered about MS, from treatment options, to diet, to the many forms of MS, to the unpredictable symptoms - have given me some peace. I felt like I was crazy before the diagnosis. I know now that I'm not. I am not alone in this and I am not helpless, and neither are you.

For your own peace of mind, go to the doctor. Look into charities at your local hospitals - most of them have some sort of organization that are for people that don't have insurance, but most of them aren't public knowledge. You have to ask. The assistance offices are also a wealth of information on community resources. The Offices of Vocational Rehabilitation are also good places to get information on any number of programs available in your local community. The government pages in the phone books also have a lot of information. So please, for your sake, take the time to get some answers. I wish I had.
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