Hey everyone, First off I want to say thank you to everyone for the feedback and supportI have received on this site thus far.
Background: DX last October with CIS so that insurance would cover the copaxone. Neuro told me I really have Relapsing-Remitting but with the copaxone I should be able to go along time without a relapse.
But, now any symptom I question he tells me is not from MS ie: new ringing in the ear, depression, stiffness, memory problems and trouble finding the word I want. And the latest is major fatigue! I feel exhausted all the time. I can force myself to keep going, I have 6 kids and a house to run when I get home from work. But, all I need to do is sit and I could fall asleep. I feel ok when I get up in the morning at 5:15, but by the time I get to work at 8 I'm dragging. I have never felt like this before. Not even when I was pregnant with twins.
Has anyone else had fatigue like this who has relapsing-remitting and did the neuro accept this? And this memory issue and trouble getting out the words is driving me crazy. I have always had an excellent memmory and now I feel terrible when I can't remember things.
Yes, I have that kind of fatigue along with trouble finding words and a pretty lousy short-term memory. My sense is that fatigue is causing the memory and language problems.
Sudden, extreme fatigue could signal a flare-up, but not necessarily. Keeping a "fatigue log" might help your neuro determine whether you need an MRI to look for new inflammation. Note when the fatigue worsens and whether it is tied to temperature changes or activities.
As far as ringing in the ears, I had that happen for a few weeks along with some hearing loss and "electrical shocks" felt in my eyes and ears. My neuro blew it off, but I am convinced that it was MS-related.
Another possible cause for all your symptoms is Copaxone. Our disease-modifying therapies all come with a nice long list of possible side effects.
If your fatigue is really bothersome, you could ask your neuro for medication that might help your fatigue such as amantadine or Provigil. Definitely push your doctor to address this issue.
You're right the log is a great idea. I'm going to keep track of the fatigue, memmory loss, word finding, and the headaches I've started getting with sharper pain above my right eye. I have been blowing the headache thing off as a sinus issue, but my husband is starting to worry about it and feels it is from the MS.
I see the neuro and have an annual MRI in September. And, my log will be coming with me.
I feel the same way - have extreme fatigue. My neuro recognizes fatigue and will give something - Provogil - but I didnt' like taking it as I am more fatigued after taking it than before then requires taking more and more. I don't like that. I just saw my neuro and complained that I am stiff and ache all over - she said it's not MS. She blames it on the weight I gained recently and the fact that I am trying to walk 3 miles per day to get back in shape. She said to keep walking. I said when I walk, I expect to come home and feel a bit more energized - but I can come home and sleep. Exercise tires me out and does not give me the energy boost that it used to long ago. I have a bad, bad memory (compared to what I used to have).
I am new here but have had ms relapsing remitting for 15 years....I am using provigil it really helps...my concern with it is that is is addicting....I am suppose to take it every am but do it about 3 or 4 times a week...It still makes the difference between getting thru the day or napping thru the day./..
Holly1416, Sorry to hear that you are having these difficulties. I completely understand as I am having all the same issues with the exception of the ringing in the ears. I, unfortunately, had to stop the Copaxone because my husband has been unemployed for 14 months now and cannot afford the insane co-pay. I have been thinking that maybe the fatigue is from stopping??? I do notice extra fatigue from socializing and doing a lot of talking - I'm assuming it's the word finding thing that is hard on us. Ironically, I'm a switchboard operator so I have to talk 8 hours a day. The memory thing drives me crazy too! Thanks so much for your posting - it's nice to know I'm not alone. Take care.
I have quite a bit of fatigue and memory loss, too. What I dislike the most is the depression, which is a side effect of the injections. I cut back my injections of Avonex to once every 2 weeks. The depression seemed to disappear. When I told my neurologist this, she said the shots would not help unless used as directed. She explained that others have tried this, and had irreversable damage once they had a flare up in addition to more memory loss. She suggested switching to the other injections that you take more frequently as they cause less depression. In the last month I went back to using the shot every week. The depression came back. I'm not sure what to do. I've not had a flare up for over 3 years. I do take extra Vit D, rhodiola root, 5htp, along with other vitamins and herbs. I eat very healthy, plus am quite active. I do take provigil once in a while, but it is so expensive. When I awake in the morning, I feel as though I never slept. I just drag. I'm at my worst in the morning for a couple hours. Some days, I'm in a constant fog. The one thing about MS is that it makes you feel like a very old person. Any suggestions?
I also have relapsing remitting ms and have terrible headaches. Similar to yours in that they often seem to be either above or behind my eyes. I've read that there is a connection between the headaches and ms. But also all the medications taken for ms has the possible side effect of headaches so who really knows
Hi Holly, I have only been diagnosed for 4 1/2 years and been on Copaxone the whole time. I noticed that the severity of my flair ups are slightly less since I have been taking it, but I still have the big flair ups at least twice a year. The fatigue, memory problems, nerve pain, stiffness, and what I call muscle twitches are a constant. When I told my nuero about fatigue he offered to start trying some meds. The first one didn't work at all. The next one was Nuvigil. It comes in 3 different doses. He started me on the middle dose. The first 2 days I didn't sleep at all, but then my body adjusted. It gives me the energy to do my normal household work and errands in the morning, then it starts wearing off around 2 or 3 in the afternoon. Which works for me, but for you it could be best to take the low dose in am and a low dose in afternoon. I went through 2 neuros before I found a really wonderful one. If I have any problems I can call and if possible he will call in meds so I don't have to go all the way to his office. He listens to my every complaint and even if he doesn't think it's the ms, he keeps an open mind because every case if different. He wants to learn all he can from each patient to be able to help the next one. He will check other causes for my symptoms before confirming ms and I like that. He tries to keep my medical charges as cheap as possible also. He is GREAT. If you are not satisfied with your neuro, keep looking til you find one. They are out there, but you might have to drive a little farther, but it is worth it. Good luck. I haven't found anything to help with memory problems yet, except more sleep. Mine gets really bad the more tired I am. You may want to look into someone to help you with your schedule. Find someone to clean and do laundry, or get someone to help with running the kids to different school activities, or even check to see if the government has programs in your area to help pay for cleaning and different things. I hope it helps you out a little.
Fatigue is my biggest problem & I have been on Copaxone for 2 years...my doctor has been supportive!!. happy w/ Provigil 1 pill in early am & 1 at lunch time. seems to help. All those symptoms you are feeling are related to your MS-at least I believe so....I have all the same symptoms, excessive afternoon fatigue, stiffness occasional ear ringing. Memory issues as well. Have you considered another Neuro, one who listens? I wish you the best & hang in there!
Holly, I have the same trouble. Some days are good. Other days I can not even remember simple words. I stop in the middle of sentences because I can not recall the word I am trying to use. My ears also ring. They actually sent me for an I.Q. test. One doctors tried to say I never had what was lost. She did not know my I.Q. had previously tested at 131. I was furious. I found another doctor.
I am so tired some days I can not shower and accomplish things I want. I have to choose. They have never confirmed this is because of MS. However, they have not ruled it out. No answers at all. They do not want to commit and be wrong. I had stage three lyme disease and was treated for two years. My current neuro now says this may be the problem. I don't think they know. I can empathize.
I have asked if the brain leisons can cause this and was told it was possible. None of this is any help but you are not alone.
I have resigned myself to the fact that I now go to the gym and then come home, have tea, sit in front of my computer and do something minless for a half hour; at times it takes that long or longer to drag myself upstairs for the shower. Once you get use to the iea that exercise is necessary but not necessarily invigorating then the routine and lack of energy becomes more "normal"
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