This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi I'm just wondering if anyone has any advice for me.

The doctor thinks I may suffer from MS hemiplegic migraines.

For the past 3 years I have had a feeling that my brain is a bit numb and at times it would get really bad and I wasn't able to focus on anything or think straight and I would get clumsy and forgetful.

I have just had a baby and at the beginning of my pregnancy my hand went really numb and then I had a migraine type thing with blurry vision for a bout half an hour 2 days in a row, the doctor said it was carple tunnel and a migraine and just a coincidence.

Since the beginning of my pregnancy I had these weird hot hot flashes but my numb brain feeling seemed to reduce.

After my pregnancy the hotflash feelings continued and my numb brain started feeling worse.

Last week my left hand and cheek went numb not paralysed just really numb feeling, I though I must be imagining it but it was still like that the next day. That night I was talking to my husband when I suddenly couldn't take in any information no matter how hard I tried. Then I started feeling very light like I was fading away and I literally thought I was going to die. My husband said I went completley white. It kept happening and I went into hospital. My feet would go freezing cold and then my legs but my face and arms would burn and my eyes burnt really badly. At the hospital everything was fine but I still was having these dizzy spells I felt like I was going to fade away and then die. My pulse and everything was normal.

It settled after a few hours and I was left with just the numbness and feeling abit dizzy and had a scorched feeling in my throat, arms & face. the next day was the same. The doctor thinks its MS or hemiplegic migraines but because i have had some numbness on the right aswell as the left he thinks thats means its the migraines.

I am in a permant state of dizziness/cofusion & am still numb in my left cheek arm and hand and in my right hand too cant drive and can barely hold a conversation. I havent had any headache until tonight a week later. I keep getting feelings of either scorching burning hot or freezing cold water running down my arms and up my legs. Also when I get really dizzy my stomach muscles go lax and I have to use the bathroom. I also have trouble cutting my food my left arm feels so weak and opening jars and things is the same.

do you think this is likely to be ms or something else? please help if you can I am afraid and feel so alone.

Hi Melissa. I can't speak as to whether or not you have ms, as I'm fairly new to this myself, but there seems to be a lot of knowledgeable people on the forum. Hopefully someone will address your question shortly. I can though totally relate to your anxiety and the feeling of being alone. I've had those feelings on more than one occasion and can tell you that they make everything else you have going on seem ten times worse. Just keep in mind this has been going on for three years now. I've felt like death was just around the corner a few times myself. Especially with fatigue (and confusion) that makes you feel like you're melting into your chair. I remember having an exacerbation a few years ago and thinking I was going to die. Apparently my darling wife thought so too. She stayed away from the house as much as she could. lol. Talk about feeling alone! As soon as I woke my thoughts turned to death. These thoughts consumed me all day every day for months. Looking back now it made everything so much worse. Just take a breath and try to relax and know that you're NOT alone

Thanks for your post. Im sorry that you didn't have the support you needed and hope you are feeling better now. Im really struggling with not knowing what is wrong because I can't really get help or support from people going through the same thing if I don't know what it is I also don't know whether its an attack or episode that will subside in a few days or weeks or if its permanant or whether there will be meds to help me. I have numbness and hotness atm that increases and subsides throughout the day but doesn't disappear completley. I have spent the last few years wondering if i have suddenly become dumb or if I was crazy its been a really struggle my brain felt so numb all the time and would feel so bad that i couldn't think, talk or function properly and I couldn't talk to anyone because they just though I was weird but I though well I can't be sick or I would get worse. Now this is happened I don't know what to think. Im not a sickly person so I don't believe anything can be wrong but it is soo wrong I don't know how it can't be serious if that makes sense. I have been like this for a week and am not getting better or worse I feel like im in limbo every task is a giant mission I feel like someone whos really really drunk trying to focus really hard to get every little thing done. another weird thing is I cant tell left from right, east from west and things like that i think it might be that im having trouble visualizing things. sorry to go on im just so lost atm

If it were me I'd press my doctor for more tests and possibly a referral to a neurologist. (if he's not) One thing you have to consider is that we're usually not related to our doctors and if the truth was known most of them really don't give a crap. I've been through about six myself. It can be very frustrating. Stay on your doc and if he keeps blowing you off look for another. And another. And another. lol. Nobody is going to be as concerned about you as you.

Just wanted to add (since I know you're really wanting answers) that your inability to recognize left from right could be just stress (stress can really do a number on you) or the typical confusion associated with ms. For me that type of confusion typically goes along with a really bad bout of fatigue. But they say ms is different for everyone.

Melissa can you get your doctor to order an MRI? Are you seeing a neurologist?

thanks for your help it is so difficult, the doctor did refer me to a neurologist i think i am talking to him again on monday so i will check.. i just had another dizzy attack it start with noise sensitivity then i got extremely dizzy like i was blacking out and an electric shock feeling in my eye. the dizziness is more like im getting lighter and lighter and my left side got more numb than it was. it is so frightening that i feel like im going to die even though i have had it before. im feeling a lot worse now numb, my throat is dry though i drink plenty of water, im confused my face is burning and i feel ice cold in my veins. our doctor is away on the weekend but i might go see the after hours. i hope i dont get any more of these they are frightening and i can't panic at all because i don't want to make it worse

Hang in there Melissa. I know it's hard to stay calm. If it is ms one thing I would suggest you do is to start to limit your diet right now. Won't hurt it and it could very well help. It did for me. I'm down to eating chicken breast, fish, green vegetables, almonds, and water. My symptoms started to improve as soon as I started excluding things from my diet. If you smoke, stop. Should have plenty of motivation the way you're feeling. Can't stress enough to only drink water. No coffee, tea, milk, or soda.

Melissa
If you feel much worse this evening I don't think you should wait through the weekend. It may be wise to be seen by someone sooner to make sure these symptoms aren't something else besides MS.

Thank you I will try the dieting my doctor told me to drink coffee when i feel dizzy because if i had hemiplegic migraines he thinks it would help he seems like a good doctor but with hemiplegic migraines your meant to get paralysed or pass out which neither of those things have happened and i just get dizzy and light.

Im feeling terrible I keep getting tiny electric shocks all over and the numbness is worse after now after the last dizzy attack/spell from the top of my left head to the bottom of my left toes even my throat and everything. I live half an hour away from the afterhours and have a 6week old and 2 year old baby so going to the doctor is a bit of a mission. I went to emergency the other night with the first incident and made stand on one foot and follow their finger etc and i passed all those tests and everything was normal. they didn't do a CT because im a young female and then i had to come back the next day to talk to a doctor and i saw my own doctor again that day too all three did the funny balance, eye following and strength tests and i past. I am scared that I will die but everyone told me that I will be okay I have just had a baby so my vitals must be intact.

My husband doesn't understand how wrong I feel and that I have never felt this before, im not just tired or thirsty its a lot worse and he thinks I should wait until monday to see the regular doctor because the AH doc will just tell me the same as everyone else which is that I am fine and it might be ms or it might be something else or I might never know. Sorry to go on this is just a real living nightmare.

How do you feel today?

Melissa, you do need to see a doctor who will arrange for you to see a neurologist and order an mri. If your own doctor thinks this isn't needed then maybe an out of hours doctor would be better. You very likely don't have MS but you do need to find out what is wrong, and quickly. In the meantime don't stint on drinking water even if you have to go to the lavatory more often. Please listen to me.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Thanks you guys are a lot of help during this scary time. I am going back to the doctor tomorrow. I woke up this morning feeling a little better but numb in my left cheek, now I feel numb from the top of my head to the bottom with some tingling on my right hand and foot. My head feels tight and prickly and I feel like theres cold water running through the veins in my legs. The symptoms are horrible the fade a little and then get worse again throughout the day. I also am worse after each dizzy spell the last one spread the numbness to my leg which makes me scared of what will happen next time.

I wish I could fast forward to know what it is. Im also breastfeeding my 6 week old and am sad that the doctor wants to put me on med for hemiplegic migraines which means I will have to stop breastfeeding, I really don't think I have the migraines.

Is the thing you think it is safe? and will it be picked up on the mri? or doesnt the mri just need to eliminate the possibility of anything like ms etc. The doctor isn't open until tomorrow.

An MRI will be able to tell many things. You need to get answers before you start on any meds, especially since you are breastfeeding. I agree with Sarah on this-you need to get moving on this quickly. It is possible that it is simply something hormonal since you recently had a baby. But you sound miserable with all the symptoms you are describing. And it is important to try to get to the bottom of this quickly.

Really? can hormonal things cause symptoms this bad? I hope it is just something like that I don't want to have to go through this again. The only thing is the numb brain feeling i have had for the past few years I really want it to go too because sometimes its gotten so bad that I can't function and I make really bad mistakes or struggle to do simple chores etc. I had it 24/7 but it got really bad sometimes i had actually reached a point where I had realized that this isn't normal and I can't deal with it forever and was going to see the doctor when all this other stuff happened. I don't know if they are related or not but I guess I will find out at some point.

The doctor told me to wait a month and see if I get better but I am struggling to get through the weekend without going back it feels so bad. I don't want to stop breastfeeding to take meds I don't need. I can't wait for today to be over I will get back to the doctor tomorrow. but if you have any information relating to what you think it is or hormonal things that can cause this I would appreciate it. I don't really see the point in wasting mri on myself if its not that serious either... Thanks for all your help you have given me hope