Hi! I know I don't answer posts much lately because of family needs and then school started and it's kicking my butt!!!!!! Sorry it will be long to read but had to write background so you can understand my questions. Thanks!!
For a few weeks I have had swelling in my left leg and foot but ironically I have had tremors in my left hand real bad and right hand not as bad. I can't type steady so if something is spelled wrong I'm sorry!! So I called my neurologist last Monday morning and left a message for the nurse. I didn't get a call back until late Tuesday just to tell me it would be later in the week before neurologist (referred to as my doctor) would call me back and he was leaving the practice on the 9th and as soon as the nurse practitioner comes Icwould be assigned to her. I'm still a newbie to MS so I'm trying to educate myself on all things. On Wednesday I had physical therapy and I was feeling weird like my left lower face was real heavy and before I started talking my physical therapist noticed a dropping and slurring of my s words so she sent a physician's note into my doctor. In addition I should stop by upstairs and see if I could be worked in with my doctor. Well he called in sick and not sure if he would be back the rest of the week. I had my 6 month MRI on Tuesday. The swelling in my leg/foot got worse so I knew my family doctor would help me so at my appointment he told me to go to the emergency room to check the swelling but to have neurologist on call to decide what to do about the neurological symptoms. So went to emergency room where they did nothing for my swelling and told me no new legions and sent me home with a prescription they treat seizures and a follow up with the neurologist. So I didn't get a bed or room so the emergency room doctor had to talk to me with others present so no privacy!! I started crying because I was made to feel like a liar so left there angry and like I was alone with no one to talk to about MS (there is a support group but all they do is have programs and there is little to no opportunity to talk to someone, so I haven't made any friends and because of that I have decided not to go back. So here are my questions:
(1) Has anyone been treated for tremors using a seizure medicine?
(2) My MRI showed no new lesions using contrast so I decided to read the report and noted with it that 2 older lesions increased in size but not active with contrast. Can anyone have tremors and leg weakness if older legions are growing? I'm not sure or convinced that I was having seizures since these tremors are all day especially when holding objects or typing.
So basically I am confused and am in the process of finding another neurologist. I did not fill the prescription going to talk to family doctor first!
My family doctor wanted me admitted to hospital for IV fluids/antibiotics and edema pumps to push fluids out and some steroid injections or IV steroids but I felt so pushed away in a corner because of MS!
Help! Any advice?
Thanks!
Written by
KATC1972
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KATC1972 First of all, I'm sending a big hug your way. MS is so scary. It sounds like your regular Dr. thinks that you might be in a relapse and wanted you to get the IV steroids for this. I'm not familiar with tremors. Maybe you can call your regular doctor and ask what you should do. There should be someone on call or a way to get through to him on the weekend. Is there a different hospital ER you can go to?
Thank you for your time! Yes, there is another hospital but the wait time is so terrible! I know my family doctor was putting a referral in for an emergency appointment with a new neurologist so I should be hearing something from him tomorrow! My face droopiness is not happening this morning so that is good! If the heavy feeling comes back I will go to the other emergency room which is where the new neurologist would be affiliated through!
Sorry you are going through such a rough patch. I don't know anything about tremors. Steroids or relapses, but I want you to know I am praying for you and like Iona60, sending you a great big hug from the uk. Hoping someone on here as answers for you. Keep us posted as to how you get on, blessings Jimeka
Another hug 💝 for you, KATC1972 . I'm sorry I don't have the answers you are looking for, but is there another neurologist or MS specialist in your area? I know that doesn't fix your immediate problem, but it sounds like you need to find a better neuro for the long term. I hope your family doc can help you in the meantime. Keeping you in prayer during this time.
Is the seizure med gabapentin KATC1972 ? If so, I take that for the various sensory issues I have. Some here have problems with it. I don't. For me, it is my MS miracle drug. It might help with the tremors. I have tremor-like humming in my bladder that drives me nuts. Gabapentin calms it.
I take Gabapentin 600 mg 3x daily and Baclofen 10 mg 3x daily for muscle spasms. Since I read Baclofen in higher doses helps tremors so I'm self medicating 20mg right now and will ask my family doctor to put in a prescription for higher dose which is still higher but he may increase it (20 mg still low dose) more. The Gabapentin was prescribed for muscle spasms in my stomach. Baclofen was prescribed by the neurologist back in December when I started having these tremors. I even asked about this when I saw my neurologist in February and he explained this to me. At no time did he mention he was leaving the practice and he should have said something since I was one of his original patients when he was new to the clinic back in September 2015. He seemed to care more back then so that might be my answer to why he is leaving!
Thank you for your prayers! I sure could use them!
Yes, there are other neurologists in the area so my family doctor started an emergency visit referral request. There is an MS center two hours away at the University of Virginia (this is where they send you when your medical issue is big and complex) but not sure if those doctors are in network so I need to check on that tomorrow sometimes insurance companies will make it happen if the referring doctor thinks it is necessary and he will agree!
Let's hope and pray your insurance covers the MS Center. I travel over 2 hours to where my neuro is at the MS Center here. I love her and feel it is worth the drive to see an expert. Thankfully, my insurance is accepted there. 💕
Thank you! I'm going to talk to my family doctor about it all today or tomorrow morning. I don't think he got my email (unfortunately for me he may be out if the office.. UGH!!) and another family doctor won't know my history enough to do much for me. Yes, I stopped double dosing and started back on Aubagio last night.
Thank you for checking in, you don't know how much I appreciate it!
Hi! Thank you for your reply. I sent an email to my family doctor outlining what happened at the emergency room and how they made me feel. So I'm fairly confident that he will respond to it tomorrow. The droopiness has gone away for now but the swelling is still bad and I need to have this cleared up as my brother and I have been planning a trip to Florida March 13th which is when we fly out of Roanoke for a week. If I mysteriously get better then I know a warmer climate is for me!!
KATC1972 you really shouldn't wait! I'm sure there is a new shift by now? Which means new Drs? Or even a less busier time? I feel it's very important for you to go back!
In the meantime try putting your feet up above heart level, to help ease the swelling a bit? Always worked for me, doesn't mean it will for you though. But doesn't hurt to try.
Thanks I started doing better for a few days but yesterday the tremors started again bad yesterday. So calling to get appointment this morning. I hope he is available!
Thank you! Words can't express how much I appreciate all of your assistance!! Also I appreciate everyone's responses too I love it!!
You stated droopingg and slurring of words that sounds very similar to a stroke you need to go back to the ER and tell them all your symptoms I'm sorry I treated you poorly big hug and good luck
I'm feeling better today but yesterday morning was challenging but I kept going. The face droopiness is gone but the leg swelling is still in my left foot and leg. I told that doctor at the emergency room everything and when he explained the medication I asked him what I need to do about the swelling and he replied...just elevate it! Well duh!! For the first time I lost my confidence in that emergency room. II was angry and upset because they did nothing but rule out a blood clot. I also felt lonely like I had no one to talk to about my MS. The support group here just basically sponsors programs from drug companies where doctors come and talks about MS in relation to their drugs. I have not been able to make any friends who can help because it seems like they have their cliques and no one is welcomed. Oh well! Needless to say I don't plan to go back! There is only so many lectures you can hear about Aubagio! Well thank you for your input!
So sorry u are not getting the care and attn. u deserve. I concur with others. Find a new doc ASAP.
Some thoughts. Are the seizure meds for neuropathy, face heavy rather than the tremors?
My fine tremors worsen with fatigue and stress. I also have right sided large tremors with isolated right arm and leg movements due to lesions in cerebellar area: cerebellar ataxia. I don't take meds for this. Adjust my activities.
If the swelling is one sided, they should have done a Doppler ultrasound to rule out blood clot.
I also haven't found a support group locally that feels like our family here and have not gone back to them.
Thank you for your reply to my problem. Yes, they did a Doppler and ruled out a blood clot. Fortunately, my MRI was done on Tuesday of last week and no new lesions were found with and without contrast but in the note from theradiologist stated there wwere remarkable enlargement of old lesions seen without contrast from previous MRI scans done in September 2015 & November 2016. Isn't that a significant result in 3 months? Can old lesions be considered active if they are increasing in size? So the anti seizure medicine was for partial seizures causing tremors. If my tremors occur all day like yesterday how can they be partial seizures? Just doesn't seem rationale to me!
Well thank you for your response! It means a lot to me! I joined a forum sponsored by MS Association but that was a social forum and it was beneficial to them. I put out feeler postings but here everyone is genuine!
KATC1972 partial seizures usually mean was only affecting part of your body as opposed to grand mal or total tonic clonic body involvement (at least my best guess).
My guess about enlargement of lesions is that there is progression (inflammations?) but no active or new lesions.
Sounds like they give u appropriate care but forgot to keep u in the loop about why they were doing things 🙁
KATC92 I am so sorry to hear how you were disrespected. NO ONE has a right to make any MS diagnosed person feel like a liar when trying to describe what is going on in her or his body. Because this disease is so variable and affects each person so differently, many of us have had similar experiences. I wish I could be of more help than this. I will be thinking of you, hoping you get the help you need, delivered with respect!
KATC1972 When you have time and information about the UVA MS center, please share. I am returning to Virginia in late summer, and will be living midway between C-ville and Richmond. I had a looney neuro at MCV, and a disinterested one in C-ville, so I will be looking for a new neuro after I settle in. Your later posts sound as if you are feeling better, I hope the trend continues. Linda
@KATC1979 I was diagnosed with Essential Tremor a few years before they discovered I had MS. The drugs they tried for my tremor were mostly anti-seizure meds. and included gabapentin, which did not effect me in any way that I could tell, and topomax which did not agree with me at all, and did no good anyways, then primidone (I am not sure if that is a seizure med). The priimidone helped some and I did not have the severe side effects that some experience. My neuro. was careful with each med to titrate up then down in dosage slowly, taking a couple of weeks off each med. before I started to titrate up on a new one. So that is a detailed answer when maybe a YES would have done. Tremors can occur on one or both sides of your body, and can effect hands, head, voice, legs, and other body parts. Some tremors occur only with "intention" that is only when you try to do something. Other tremors are constant, so I have read, even when at rest or trying to sleep (as with Parkinson's). I hope you are able to find answers SOON. As challenging as this disease is, we do not need the added stress of the run-around that you have experienced. Please know we are all thinking of you, and I must say good-for-you for advocating for yourself. I am in my 60s and have improved, but still need to do better speaking up! Let us know how the first of the week goes.
Hi! I am so glad you spoke up! I am planning on trying the seizure medicine since I couldn't stay awake enough to read and work on my assignment so put me enough
So sorry! See how the tremors affect my typing on this phone!
I'm calling today to see if my family doctor has an opening to discuss this med andwhether he agrees with it or if there is something else.
I so appreciate this MS community becauseyou guys don't talk about sports or who won the football game and thetthe problems with significaothers and ignore my questions about meds or MS in general.
Thank you for assistance! I will update you later!
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