sj27 24/01/15
Last reply 3 years ago
Tingling permanent?

Hello
I’m new to this and so far just been reading lots of useful posts.
I was diagnosed in June by a private neurologist. It started for me with tingling thighs when I walked which I stupidly ignored for too long. It was only when it moved to the top of my left foot that I went to my GP. I’m yet to see an NHS ms neurologist so no medication as yet.
Since diagnosis I have experienced some pain, aching, buzzing and a few periods of dizzyness – all on and off. Nothing that is too terrible although I find the dizzy spells hard. I think I had a relapse after diagnosis but not 100%. It tends to all happen when I’m tired or stress but sometimes there isn’t an explanation.
My question is really whether the pain, tingling, buzzing etc is now permanent damage that I will have to learn to live with rather than relapses?
Any advice welcomed. Thank you!

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
3 years ago

@sj27 , our relapses cause lesions on our brains or down our spine.. These lesions can leave some scarring, which can interfere with messages going from our nerve endings to the brain, and back again.

If the brain can’t work out what the nerve endings are doing and feeling, it can’t send the right response. And sensory problems can occur.

This is called Dysaesthesia, or paraesthesia (http://www.mstrust.org.uk/atoz/dysaesthesia.jsp)

These sensations can get invoked when we are tired or stressed…..


us-emma
3 years ago

@sj27,

Short answer yes & no

That isn’t helpful but MS is so different from one person to another.

With that said most early symptoms will get better with treatment in the short term. If not treated aggressively & early the ‘damage will be done’ & in most cases be irreversible later in the disease.

You first symptoms may resolve only to come back- usually during times of high stress. For example My MS started with left lower leg numbness. Now I will get a patch of circular numbness between my middle toes on that foot. When this happens I know I am stressed & need to fix something. This most recently happened 2 weeks prior to a busy Christmas season & resolved on the 28th when I was home from all partys & traveling. I did not need treatment for this particular uptick in an old symptom.

It sounds like right now you need medical intervention (like IV steroids) to calm your MS down. Steroids are not used as long term treatment of MS disease but generally are first line during an acute attack- which it sound like you are having.

The real test of the staying power of your current symptoms would be to take 5 days of IV steroids & see if they resolve. If they do you have damage along a nerve pathway but not critical damage (you recovered). The longer you have MS non/under-treated the more damage piles up.

Take care,
Em


thebeeofnw
3 years ago

I just joined this site because of this post — I have the same question — appreciate finding your posting. I would like suggestions for how to stop the buzzing. Also any stories about Gilenya would be appreciated, I was given a choice of Tysabri or Gilenya and chose Gilenya.

My backstory — I live in the United States and was diagnosed by total surprise on 1 November during an MRI for what seemed like arthritis in my neck. They found a lesion at C4 in my cervical spine, I was sent back for another MRI that showed many spots on my brain in a Dawson Finger pattern, and then my spinal tap was positive. I am 48, happily married, female, with four kids ages 9-15. The default diagnosis was RRMS and I am now scheduled to begin Gilenya on 1 February. I was told that the diagnosis is always RRMS so that my private insurance will pay for a DMD but I am wondering when the remission starts, my symptoms have been worsening and after some soul searching I believe they are real and that I had been blocking out a lot over the past 5 years or so, calling it “old age”, “arthritis”, “menopause” — I also had emergency surgery for diverticulitis in February 2014 so I thought also that I was just recovering from that (they said it was unrelated). I have always considered myself a healthy, sturdy person nonetheless.

ANYWAY, I find a lot of information here that strikes a chord. For the past 3 nights my tingling has become buzzing that wakes me up, like electrified needles in my lips and cheeks and left arm. I took a Xanax for the previous 2 nights but it was making my too sleepy in the daytime so I stopped last night. I also take Baclofen 30 mg since 1 January because painful cramps were waking me at night. I drive my kids a lot (200 miles/322 KM a day) and my accelerator foot was locking up, then the other foot started locking and I felt stabbing in my abdomen (HS Hug?). I have more symptoms on my left side. I feel a progression of symptoms but I do not drag my leg and am still able to run 5 miles/8 KM so I guess time will tell if I have progression, I don’t think I have L’Hermittes Sign but was told it might happen. My love life has been affected by numbness (my doc said women don’t usually mention this) and I had one UTI last summer that I believe was related to trouble feeling myself have to urinate. Also my doc said MS is not painful but my muscle cramps were very painful, enough to wake me up before I started Baclofen. I sometimes wonder if the doc is worried about upsetting me, he seems concerned and may be trying to soft pedal his words. He has ordered a nerve conduction study.

I try to keep my stress level low, learned this the hard way from bowel surgery, and have been a vegetarian for 30 years but recently added back fish after my surgery. I have been trying to cut out gluten, still eat yogurt. I am into acupuncture, chiropractic care, I exercise most days, do meditate and do not feel depressed, I faced my own mortality and adjusted my outlook during the emergency surgery last year, but the uncertainty of my condition is an adjustment and it is hard to explain to my family that I sometimes feel it is harder to concentrate when driving, I am more easily startled and I believe this is related to MS. I used to live in the middle of the city with no problem and now I live in the mountains and even a tree branch snapping makes me jump. I feel very raw, like my nerves are exposed to the outside.

I am in a very rural area so it is nice to make a connection, thank you for this site.


tabbycat
3 years ago

Hi @thebeeofnw and @sj27.
I had what I used to call wizz bangs for a few years – shooting tingling in any part of my body, but mainly my legs and hands. They have virtually gone now and when I get the odd one, I am surprized by how common they used to be. All the bits that have become numb have stayed numb, but sometimes I seem to have a little more sensation than other times. I put this down to gylenia .

I know what you mean about driving, I have never been a good driver, but now it terrifies me . I worry that my right leg is not strong enough for clutch control and too many things happening on the road freaks me out. I too live in a rural area and am dependant on my husband to get me to work, go shopping etc, which is not good for harmony and equality, but that is what has to be.

It has made me worry about where we live and maybe you too will have to reassess all that driving for the kids and move closer to school. I worry that it seems like the MS is in charge, not me when I contemplate big changes, but it looks like this is the new normal.!


thebeeofnw
3 years ago

Thank you so much for that post @tabbycat, it has given me a lot to think about. Since you mention that you’ve taken Gilenya…I am on day 5 of Gilenya and hoping for the best. My extreme buzzing/shooting/tingling stopped on its own a couple days before I started the drug but I have noticed that parts of my lower legs are now numb where they weren’t before, I can’t feel for example a needle poking them during acupuncture. Do you find that Gilenya causes as well as helps numbness or do you find that maybe after a stretch of shooting tingling you end up more numb? I am having a hard time figuring out what is an MS symptom and what is a Gilenya side effect.


tabbycat
3 years ago

I had numbness and tingling for years before starting gylenia. The tingling and shooting pains improved after about 6 months on gylenia and have nearly gone. The numbness has stayed the same.
I was impatient during the first few months , but as I keep a symptom diary I can confirm that 18 months into treatment I do feel better. It doesn’t cure anything but it seems to slow things down.
Good luck.


wilf
3 years ago

I’ve been diagnosed a year, on avonex for 10months and tingling is only occasional now. Normally resurfaces when I’m tired or stressed.

There were periods where the tingling/numbness and fatigue would be stronger but they passed eventually. Probably just reminders to slow down.

There’s always hope, plus DMDs and adaptions that can be made to make life easier. Highly recommend an automatic car.

Post Comment

You must be logged in to reply to this topic.