Hi , My name is Laura. I am in the process of getting a diagnosis. I had my MRI done yesterday. I have had these crazy symptoms for many years. At the present I think the fatigue is the worse for me right now .I also have fibromyalgia ,depression and extreme muscle weakness and balance problems. Taking a shower is such a chore its like I have been on a 10 mile hike in the heat. I also suffer with bladder problems. If I do have M.S. at least I would know that i'm not crazy. Does the meds for this help with the fatigue? I feel so hopeless and feel like I am such a burden.
Hi Laura, I was diagnosed with MS March first of this year and I had a lot of fatigue problems as well. I have brought this up to my Neurologist and asked for the Provigil, my Neuroligist did not want to put me on any more drugs then I was already taking AKA Rebif. So she told me to try L-Carnitine 2000 MG a day, I take this daily ever since and have been doing well on it. I started excericing 6 days a week. I was where you are at now, only 8 month ago, I switch from drinking coffee to green tea. Used to drink so much coffee thinking it would help me. I was unable to button my own pans and shower was a chore it self to me.My sister in-law came to do my hair every day it was awful. I have 6 children very active work full time and do college online and needed to change. My biggest think was positivity to get me thru all this as well as checking into this group it has been so good to know that we are not alone with this. My children kept me going I needed to be there for them and the rest of the family. I know this might not mean alot right now to you and it is hard still today I have days where I just dont get it. I just got done with a 3 day solumedrol infusion I have been symbtom free for almost 5 month, I look at the postive site. Keep us posted on your results and I wish you well. We are here for you if you need to vent believe me we all have and do
Thinking of you
I'm so deeply sorry to hear you are suffering from these symptoms and further complicated by fibromyalgia. I am nowhere near qualified to answer (I don't even know yet if I have MS or what the heck is going on with me - I'm eagerly awaiting my first-ever appointment with a neurologist next week) so I'm sure others here are more qualified. However, its great that you got the MRI done (so be pleased with that important step you've taken even if the MRI alone can not be used to make a diagnosis). I can only imagine that you too have been referred to a neurologist who will ultimately interpret the MRI for you and then conduct further tests. How long before you see a neurologist to discuss your MRI and additionally follow up? I've read somewhere that seeing a neurologist on an outpatient basis can take several weeks (for me I was referred to a neurologist about a month ago). However, in the mean time, your primary care physician ought to be able to read the preliminary MRI report (as interpreted by a radiologist) for a general interpretation before you see a neurologist (if your primary care doctor is not proactively going to do this for you, then you most definitely should insist on it). One thing is for certain - you should never feel as if you are a "burden" when it comes to dealing with your medical practitioners (either your primary care doctor or the specialists you will see such as a neurologist). Its your life, not theirs, and you are reasonably entitled to have a good flow of communication from them (they are no "gods in white coats" and you should never be made to feel intimiated or talked down to). Please try not to feel hopeless. This probably is easy for me to state since my recent symptoms haven't been as severe or precisely the same as yours. I wish I could comment on your question about MS medications and impact on fatigue, however, I have no experience so I'm unqualified to answer. Here's hoping some experiened people can reply to you soon. All my best to you ...
Hi Laura, im real shakey today so im going to keep my reply short. I have both fibromyalgia (since 1992) and MS (since 1995 and am now primary progressive). My MS doctor prescribed Nuvigil to give me some energy. It works well for me and doesnt coflict with my other meds. I take one each day in the morning. Hope you feel better.
Fatigue was my most disabling symptom at the time of my diagnosis. I remember walking to the edge of my short driveway for the newspaper and comparing it to 100 mile hike uphill. As for meds, the disease modifying drugs I was on did not treat fatigue as far as I could tell, so I tried Provigil when suggested by my doctor. It was very effective in tricking my brain into thinking I had energy. I would be very active for about 12 hours on it. The following day if I didn't take it, I seemed to feel twice as tired though. I had to stop Provigil because it caused migraines for me. ADD meds were a nice substitution. A small dose of Ritalin (10mg) in the morning and sometimes in the early afternoon helped immensely. The other ADD meds I tried were sometimes overpowering.
I hope you find the answers you need from this round of testing.
Best wishes, Riley
Hi Laura, I was diagnosed in 2000 and am now RPMS. Fatigue is really common for many of us. Sorry you having to deal with this and waiting for diagnosis at the same time. I take ritalin 10mg 2-3 times a day and this helps me alot. Getting enough rest and controlling stress also helps, if you figure this last one out please let me know. I'm not there yet. Dale
Hi Laura, you are definitely not going crazy. You have voiced many of my husbands problems. For fatigue, my husband is on Amantadine 100 mgs twice a day. This does help him a lot We had to move the time he takes his second pill to a couple hours later because he stays up late and needed the pills to work later.
he also has trouble with showers. So we have a chair for him Incase he starts to tire. He finishes showering at those times sitting down then gets out of the shower. As for the Water he can't take hot showers as he use to because it of course warms him up which can make the fatigue worse. So he takes warm showers This helps some but he still tired out.
balance problems don't seem to bother him as much anymore since home healthcare came in and worked with him. They teach you how not to reach for things whether it be bending, reaching up or stretching , but easier/safer ways to do things
it is worth having someone help you here.
Bladder problems I have read seem to be something you can get thanks to the muscles relaxing a little Hopefully the dr can help with this
most important thing I can suggest is get not only a good MS Dr but one who can sympathize and actually help you My husbands first dr was considered the best around and undoubtedly he is our problem was he knew he was good, you only got to see him 1 time a year unless it was true my important you got to see his nurse practitioner and if you had questions (which newly Diagnosed patients have) you had to call and leave a message then wait for an answer Now we have a Neurologist we love, that actually talks to us if we have questions he doesn't rush through them and if we call with a question his nurse calls right back A doctor in my opinion is only as good if you can see and talk to him otherwise your just seeing his nurse practitioner who isn't him
Best wishes that you get the help you need.
I'm Izzy I've had MS for 6 years now. Most likely they will prescribe you something to slow down the process of the disease. Which doesn't actually help with current symptoms. They might prescribe you different medication for that.
I have also experienced fatigue but I've never been medicated for it. I advice that you try to stay active (even though it's hard), and make healthier choices in your diet. I started to feel real improvement after I met with a holistic nutritionist!
I hope this help(: