rubeus7777 17/03/18
Last reply 1 month ago
Symptoms

I feel constantly Dizzy all day everyday, is that normal MS symptoms? Also, I have these shocks In my head which causes a lot of delay with all my functions, so I was wondering will it past or do I have to find ways to Cope with it?

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henriette
1 month ago

Hi. Lhermitte’s is often described as feeling like an electrical shock or buzzing sensation. And the dizzyness can be vertigo. Yes the shocks are terrible. I am even afraid of using electric appliances now because i never know whether its me, myself and i, 😐 or whether it is indeed the electricity shocking me. Good luck. The vertigo made me fall off my chair in the office the other day. What an embarrassment it was!


rubeus7777
1 month ago

I’m sorry to hear that😔. It so hard to deal with and the dizziness won’t go away. I had it for 9 months straight… The electrical current thing is so different and I feel the same way when it comes to touching any electrical appliances or just the friction wearing socks and walking across a carpet. I really hope they figure out an new breakthrough for any autoimmune diseases.


rubeus7777
1 month ago

Hello, I’m Josh by the way.


henriette
1 month ago

Hi Josh, See you are from Newcastle? Is that KwaZulu Natal, South Africa?


rubeus7777
1 month ago

Oh no. Newcastle DE in the United States. Is that where you’re located?


henriette
1 month ago

Yes i am from South Africa.


californiadreamin
1 month ago

@rubeus7777 It is a symptom of MS and while nothing is “normal” its not uncommon. Depending on how long you have had that and what type of MS you have, its likely things can improve but likely never back to 100%

My wife had Lhermitte’s but it got better. Are you on any DMT’s or doing any kind of lifestyle modification?

Its important to do what you can to give your body every advantage to heal itself.


rubeus7777
1 month ago

Hey Californiadreamin! I was diagnosed back in December of 2017, but I think I had it for a while they said from the scaring of the lisens. They diagnosed me with RRMS, but they are going for another MRI on the 27th of this month. The DMT would be the Rituximab which I get twice a year every six months. Thank you for the advice and your concerns. I hope your wife is great now.


californiadreamin
1 month ago

hi @rubeus7777

My wife is doing great right now, but we are trying not to get complacent at all. I am surprised Rituximab would be the first drug. However, its a great first choice in my opinion. However except for Sweden its not a first line drug I thought, but I guess you are from South Africa? I dont really know the details there. Ocrevus is now on the market and is a slightly better drug in terms of effectiveness and infusion reactions and might be worth asking about.

My wife had Lhermitte’s sign for several months, but i am not sure when it went away. It got a little less noticeable each month or so and at some point over 6 months when I asked her she realized it wasnt there anymore.

My wife follows: https://overcomingms.org/ I think its important to attack MS from as many angles as possible. No one knows for sure why, but you can still have progression without attacks with RRMS and no noticeable disease activity. Strongly consider a lifestyle modification to give yourself the best chances possible. The oms protocol maybe hard for you in South Africa because everyone I know from there loves their meat.
Exercise and diet likely help with MS in different ways then the medication, so its surely worth seeing what you can add.


rubeus7777
1 month ago

I understood what you mean. I’m from the United States and I live in the State of Delware. I was skeptical about Ocrevus because on of the side effects was herpes and I was to afraid because it’s a new drug and all. I see well I’m doing the best I can to work at it from all angles. Thank you for your advice. I hope you and your family are doing well with everything and your wife is going to get the best treatment available.


californiadreamin
1 month ago

@rubeus7777 Oh didnt realize you were from Delaware. I grew up in PA. Its even more confusing to me then that Rituximab would be the first choice since its off label here. I tried to see if that was an option for my wife when she was diagnosed and Ocrevus wasnt quite out yet. Doctors were reluctant to give it without first trying something else so we went with Tecfidera. Rituximab and Ocrevus work in very similar ways so the side effects are mostly the same. If the Tecfidera stops working well, we would switch to Ocrevus at this point I think.

We are lucky to live near two really good MS centers (Stanford and UCSF) but in the end the treatments are basically the same everywhere else.


rubeus7777
1 month ago

Yeah I feel you on that… I wake up everyday hoping that they could create something that is more suitable to the disease even tho the drugs that you mentioned are 90% effective. I’m hoping that your wife gets what her body could react to that drug in a miraculous way.🙏
At least you guys are close to great centers that could give better treatment.


aabreu
1 month ago

@rubeus777 rituximab and ocrevus are basically the same drug. They will not accept you for HSCT unless you fail at least one drug. You haven’t even started on one yet. I would run, not walk if they are offered you rituximab.
Your new symptoms are just like mine. It is serious and you need to get the inflammation in you brain under control so you can heal. Ask about steroids as a stop back measure till you get on treatment.
Send me a PM if you want to speak.


rubeus7777
1 month ago

Hey Aabreu, I am taking steroids now and I’m do for another MRI in two weeks so they could see if there is any new activity in my brain because these shocks. I will PM you to speak further about other helpful info from yourself and me as well. Thank you for your input.


henriette
1 month ago

Hi. I checked out the OMS program as mentioned above and though we South Africans love meat and dairy, i am going to try it. I am currently on Rebif Interferon Beta A injections every second day. I never see anyone on this forum taking that and was wondering why. I see my neurologist on Friday. Seems I’ve had MS since 1986 but it was never picked up, until 2016 when I was sent to emergecy services of the hospital for possible stroke. All these years I’ve had, which I now only know, various relapses.


californiadreamin
1 month ago

@henriette

I read a lot of things and so far that’s the program we are betting on for now (2 years so far). I would get a copy of the book, it is on amazon, if you want a deeper underside of ms. For our family, seeing the science behind the approach is what really motivates us to stick with it. It was hard in the beginning but gets easier with each day.


rubeus7777
1 month ago

Hey @henriette
That sounds very promising, sorry for the late delay, I thought I responded back to you already, but as you can see I’m a bit forgetful lol. We will keep on fighting until there are better choices in which it will happen. “Hope, Love and Happiness :)” Thats what makes life much more fulfilling.

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