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Tinglings and others?
#280656 06/27/18 05:35 PM
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Hello everyone,

I am new to this board so I will gladly present myself first and be thankful in advance to anyone who will take the time to read this enormous post.

I have been diagnosed with Ankylosing Spondylitis when I was 21 years old. My first very noticeable symptom appeared about 1 year before my diagnostic. I woke up one morning with pain and swollen feet. Precisely it was located symmetrically at the 3rd toes of each foot. One year later I had a positive diagnostic for AS with all the classical things from the medical point of view:
young male adult, HLAB27+, inflammation visible on scans, high CRP level, responsive to NSAIDS, etc ...

I then started to take steroids, methotrexate and NSAIDS (ibuprofene). Nothing really worked in the long run, so one year
after that I started to take Enbrel (50mg per week), which changed my life from the first day and allowed me to have a normal life again (before that I had really hard time walking and stand since my inflammation was located in the feet and was at that time rather high).

I am now 30 year old and I am posting this message on this forum because I would like to know if someone experienced the same thing as me or if someone has an objective clue on what is happening. I am explicitly saying "objective" because, currently, I am not. Let's dive in the topic, and beware that I might put some personal things/emotions but it is needed to understand fully my situation.

I am currently abroad and will come back in my home country (France) in 1 month. At the end of March of this year, I had an anterior uveitis and didn't know anything about that. I didn't even know it was highly linked to AS. So I went to the local emergencies and this is exactly when I entered the hell loop I am currently in. The ophthalmologist in charge explained to me in like 1 minute that what I had is called an anterior uveitis, that it is linked to my AS and that I need to treat it carefully because it is a sight threatening condition, that it might go away or not, and might come back stronger. All of this happened in 1 minute and while we were both not speaking in our native language. I came out of the emergencies in the worst state possible wondering if I will be blind 1 month later.

I started to become extremely anxious and stressed, couldn't sleep well at night and didn't know what was happening to me. Since I had 0 information, I started to look up things on the internet, and ended up looking at the worst case scenario possible, which worsened everything in my head. In the meanwhile, my uveitis was still there but behaving properly (it cleared off after 2 months). Steroids drops worked well and no sign of damages to the eye from the ophthalmologist point of view.

Then one day, about one month after my uveitis onset, I did this terrible mistake that I still regret today.
I don't know why, I don't know how it happened really, I can't remember. But I ended looking at correlations between uveitis, MS (multiple sclerosis) and AS. Why the hell did I do that? I cannot tell you. Maybe because I have known someone with this disease, maybe because I have seen this disease name on some random website while looking at uveitis informations. So I started to auto frighten myself and look at the possible symptoms of MS.

And, OF COURSE, a few days after having looked up this kind of things, I woke up one morning with a huge pain between my left shoulder blade and my spine (actually happened after trying a thicker pillow to "avoid" having bloodshot eyes in the morning).
I couldn't turn my head left, it was hurting too much (I could turn right). And I had to roll on the side to get out of bed as trying to stand while on the back was hurting too much also. Then, maybe 1, 2, or 3 days after, I started having tinglings mainly in my right hand, and a bit in my left hand. It was worse while walking, my whole right hand was tingly. While at rest It was most of the time ok and during the night nearly nothing. After that the tinglings started to move around for no apparent reasons (seems linked with back pain though) but only located in hands and feet, never everything at the same time, and seems like not always the same location, sometimes it would be the thumb of the left hand, then the index, then come back to the palm of the right hand, all that different from day to day.

And I did go on with my first mistake, I looked up on the internet for "tingling". When you type that on the internet the only thing that pops up is MS. So, from this day I went into a crazy maniac anxious hellish state of mind. I tested about EVERYTHING on my body, trying to look for any sign of weakness/numbness, balance problem, lhermitte signs (which I think worsened my back problem), etc ... I went totally crazy about it and could spend hours googling and testing stuffs. What I found is the following:

- I eventually found out that if I "pushed" my head forward and to the right it would increase/trigger the tinglings on my right hand.
- If I walk for a while and stop at once, I feel like blood going through my hands and tingling and then it clears off quickly after.
- Sometimes I can trigger the tinglings in my right hand by just contracting my neck muscles (without moving my head or anything).
- Sometimes I feel this tingling sensation if I lift my arms up or move them around (without moving any other body parts). For instance, moving my left arm would procude tinglings in my right hand.
- If I brutally bend my head so that my chin hits my chest, I can feel the tinglings in my fingers of both hands during 1 seconds. If I repeat that over and over again I can't feel the tinglings anymore, but it messes up with my back and seems to triggers tinglings later in other parts of my body.
- Elevating my shoulders and dropping them quickly would produce a quick tingling shock in both my hands.
- I had a weird sense of touch on my hands and feet during that but no numbness or anything. I could distinguish a soft object from a sharp one on my hands and feet and anywhere in my body.
- I also had a weird sense of weakness in my right arm (I am left handed) but could lift heavy things with one arm or the other.
- I have muscle twitches about anywhere in the body (not the head) from time to time. It twitches for 5 seconds, then wears off. The next twitch will be located at a different muscle.
- My left eye is a bit strange since the uveitis. If I look closely at a white wall and look up quickly, I see a small black stripe for half a second. Only happens on the left eye. I see my "heartbeat" in my eyes, meaning that I can see almost transparent black forms on the corners of my vision following exactly my heartbeat, I have to look at a white wall to see this. At the end of the day or with bad lightning my left eye is a bit blurry compared to the right one, but I still have maximum score sight on both eyes. And boths my eyes are reddish since the uveitis.

After that I had a strange episode of brain fog/dizziness/headaches (lasted 2 weeks, I started to took B vitamins and it is ok now), with something that feels like a heavy weight at the back of my head, inside, mainly triggered while gently tilting my head back. It would last a second and wears off. If I moved my head quickly from one direction to another it was ok, and I had no balance problem.

And currently, I have no real tinglings but more like a mild sensation of blood flow, I don't know how to explain properly. For instance, from time to time, every X seconds I feel like very small tingling sensation, or a blood flow sensation, or itchy/bug crawling sensation on a small line under the left foot, it lasts 1 second, then a few seconds/minutes after it is on the tip of the thumb of the left hand, then it is on the tip of the index finger of the right hand, then it comes back to the left foot but on the talon, then on the some part of my right sole foot, etc ... It is always an on and off sensation during the day, and calms down while I rest/sleep (unless I mistreat my upper back to check things ...). Sometimes, usually after walking for some time, like an hour, it can stays on the same "line" on the index for example (not always the same location), and I have this blood flow sensation every 10 seconds, that lasts for 1 second. Then it wears off while resting/doing nothing specific. Also, when it is like that, if I press something with my finger and release it, it triggers this blood flow sensation for a 1 or 2 seconds. For instance, scrolling a webpage with the mouse wheel might produce that.

I did make a quick back and forth trip to see my rheumy in France and he didn't believe in MS because I had no real other symptoms (numbness, off-balance, etc ...) and everything seems to be linked to the upper-back/neck pain that I have since then. For instance, the morning everything is stiff in the neck area/upper back, and painful when I tilt my head forward, and when I move my head left or right I feel some crackling (arthritis?). Also, one vertebra is painful when I touch it with my fniger (one around T1/C7). Still, he asked me to do an upper back/neck MRI and I asked me to make me pass an EMG and brain MRI.

To sum up, I have these weird symptoms, I am really scared and literally cannot think about something else since end of March, which affects my concentration, my work, etc ... I am scared to death, and e-x-t-r-e-m-e-l-y anxious. I am up to point where I can hardly tell the difference between normal things happening in my body, things happening because I am very anxious or things happening because there is a medical reason to it.

The problem is when you start looking at the following type of question "Can symptom X be related to MS?" on the internet, the answer is yes 99.99% of the time with whatever symptom X you can think of. The only thing that made me come back a little on earth was to witness on this very forum in the thread titled "Spondylitis Symptoms - List Your Symptoms" that a lot of people actually experiences tinglings, and such. But I do not know if mine sound more like AS or something else?

I need to wait 1 more month to hope to have some answers and the wait is unbearable. If someone had this kind of symptoms or could explain to me what it could be, or if it does or does not sound like AS symptoms, I would be really thankful. Also, I bet it would help other people since I guess I am not at all the first one to be scared by a bad combination of new symptoms, anxiety, and google searches.

Best wishes to all of you.

Re: Tinglings and others?
pinou #280657 06/27/18 06:00 PM
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Last year, I developed tingling, numbness, and tremor in my right arm and hand along with all-over-the-head headaches, which I had never suffered from before. Like you, I take Enbrel. Because Enbrel can, in rare instances, cause an MS-like syndrome, my rheumatologist referred me to a neurologist for testing. After a neurological exam, a brain scan, nerve conduction tests of both my arms, and bloodwork, it was determined that my symptoms were likely caused by low Vitamin B12 and/or inflammation in my neck irritating a nerve there. They found no tumors and no signs of MS in my brain, and the nerves in my arms are working properly. My B12 result was actually low-normal (286), but that is low enough to cause neurological symptoms in some people. So I started B12 shots. If you have a true B12 deficiency despite eating a normal diet (i.e., a non-vegan diet), oral supplementation will not fix it because your body has stopped absorbing B12 in the normal way. You likely need B12 injections. There is also a B12 nasal spray available now, but it's expensive in the US. In some countries (not sure about France), sublingual B12 tablets are used, but I don't think they're as effective as injections. A year after starting B12 shots, my symptoms have improved but have not cleared up entirely. So I do think some inflammation in my neck is playing a role. I continue to see a neurologist regularly just in case.

So, based on my experience and all the research I did during that time, I think you probably don't have MS. The fact that you can trigger the tingling by moving your neck certain ways kinda indicates inflammation in your neck may be your problem. If you do have symptoms of MS, Enbrel may be causing it, and your symptoms may improve if you stop the Enbrel. Talk to your doctors about that possibility. But also have your B12 checked if you haven't already, because that would be the simplest explanation for your symptoms and also the easiest to fix.

Re: Tinglings and others?
pinou #280658 06/27/18 06:19 PM
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Pinou,

I've pretty much been the resident anxious guy on here for the past month or so and I understand your stress 100%. In my case, I've been having some AS pain coming back after 6 years virtually pain-free and it caused me to freak out and fall into a depression. You're scared of MS. For me, it's fusion of my spine. We all fear different things.

Like you, I have googled my way to hell and back. I've looked up worst case scenarios until I couldn't function from the anxiety I had. But as someone here told me, and as my GP told me too, you'll only find the worst online because people don't bother writing anything or filming anything when they feel well. And ultimately, almost everything can be a symptom of anything.

In the beginning of my depression, I too had a short moment where I thought I had MS and I swear that my hand tingled and my legs were weak just by reading symptoms online. I was so focused on looking for MS symptoms that I was attributing everything to the disease including my arm falling asleep after I've been laying on my side for 45 minutes...

And then I freaked out about my neck or something unrelated to MS and I realized two weeks later that I stopped having MS "symptoms". Or rather I was focused on something else and stopped over-analyzing everything.

You may have a pinched nerve in your neck. You may also have nothing. Anxiety is a very deceptive. It truly can make you feel things that you wouldn't feel if you weren't actively looking for them. I'm not saying you don't have symptoms. But I think that being hyper-aware of every little change in your body can make you feel things stronger than you normally would. For instance, I feel less pain when I'm playing a video game. Not zero pain, but less.

Looking up stuff online is the WORST thing you can do if you're anxious and have a chronic disease. You have to actively force yourself not to. And too much stretching and strange movements can actually cause symptoms. For example, my GF is perfectly healty, but if she does fast movements of the neck many times a day like you do, she'll likely have sharp pain too.

Honestly, I think that if you had MS, you would know. It's not the type of thing where you have to actively try to "activate" symptoms. They're just there.

Also tingling can happen while on Enbrel. If it's Enbrel causing MS-like symptoms, they'll go away when you stop it. Cases of full-blown MS caused by Enbrel or any other biologics are extremely rare and most likely the patient had "latent" MS to begin with.

Don't hesitate to post as much as needed.

Take care.

Re: Tinglings and others?
pinou #280663 06/28/18 09:13 AM
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First of all, thank you Winston and seymour for your answers.

Second, I have to admit I did burst into tears while reading your messages. I don't know really why, I think I am so much in distress right now that being able
to talk to people understanding my feelings and what I am going through is a big step for me. Especially the "Don't hesitate to post as much as needed." ...

I definitely have to check my vitamins level, I would not be surprised to have some deficiency.

The thing that worries me is that the symptoms are there, but not always, sometimes yes, and sometimes no. But yeah, it seems to be worsened by mechanical movements in the upper back.

For some part of the day, I try to sum up what is happening and tell my self : "Oh come on, if it was MS it would mean that it has nothing to do with the back/neck pain and arthritis/stiffness that happened at the same moment, so nothing to do with the AS even though lots of people experience this kind of symptoms with AS,
so it would probably mean multiple lesions without any noticeable neurological symptoms other than just "tiny tinglings", what the hell?! Plus, people with MS
have real permanent tinglings located in the whole hand, arm, half body, not in a random fashion. Let's be realistic for f*ck sake."

And the same day, later on, I am like : "But, ... maybe it is it nevertheless?"

Well, I guess you know the feeling of this up and down emotions during the same day.

What I am wondering is if it was neck inflammation induced, could it be like that? Small tinglings here and there in the hands/feet, every X seconds?

Good day to you.

Re: Tinglings and others?
pinou #280664 06/28/18 02:36 PM
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hello, I have a lot of tinglings in my left foot + Achilles. Numbness in the hands legs while staying in an awkward position longer. I even woke of 1 day with half of my body in tremors - although only once and I attribute this to alcohol abuse at that occasion.
what however I cannot get over with without asking questions is why on earth since 1 year I have this occasional pinching/burning sensation of the tips of my ears? And its not blood pressure related.


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: Tinglings and others?
pinou #280668 06/28/18 06:04 PM
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Hello there Pinou. My guess from what you're describing is like Seymour said, very possibly from a pinched nerve or something from the AS. I am one of the very unlucky few who ended up with MS symptoms after taking a biologic and they were definitely not small tinglings, more like tremors...and also not induced when I moved. They were pretty much constant. I'm of course, not a Dr, but my guess is that it's not MS or medically induced MS. Luckily though, as pointed out already, if you were to go through the testing and find out that it is, and was caused by the biologic, it does end up going away after being off of the biologic for a while. Hugs to everyone going through the daily wonderings of AS. smile


Beth
Re: Tinglings and others?
pinou #280669 06/28/18 06:57 PM
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Originally Posted by pinou


For some part of the day, I try to sum up what is happening and tell my self : "Oh come on, if it was MS it would mean that it has nothing to do with the back/neck pain and arthritis/stiffness that happened at the same moment, so nothing to do with the AS even though lots of people experience this kind of symptoms with AS,
so it would probably mean multiple lesions without any noticeable neurological symptoms other than just "tiny tinglings", what the hell?! Plus, people with MS
have real permanent tinglings located in the whole hand, arm, half body, not in a random fashion. Let's be realistic for f*ck sake."

And the same day, later on, I am like : "But, ... maybe it is it nevertheless?"

Well, I guess you know the feeling of this up and down emotions during the same day.



Yeah I do, very much. The body is strange, and even stranger under anxiety. I'm not saying ignore your symptoms, but don't freak out yet. A lot of things go away on their own. I would suggest you stay away from medical sites and stop trying to induce symptoms by moving your neck abruptly.

If that's any consolation I have freaked out about a lot of things in my life (once thought I had liver cancer) and none of them turned out true.

Re: Tinglings and others?
pinou #280672 06/28/18 09:57 PM
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Originally Posted by pinou
What I am wondering is if it was neck inflammation induced, could it be like that? Small tinglings here and there in the hands/feet, every X seconds?


Yes, it could be like that.If the nerve is getting intermittent pressure rather than constant pressure, it could cause the tingling to come and go.

And I agree with Seymour to stay away from medical sites and stop trying to induce symptoms. We had someone here once who had some tenderness around her sternum/breastbone and had pressed on it so much that she had made it 10 times more sore.

It sounds like you got good advice from your rheumatologist. so try to relax and stop worrying. And I would suggest seeing a counselor or psychologist about your anxiety. They can teach you ways to keep your anxiety from getting out of hand.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Tinglings and others?
pinou #280677 06/29/18 05:27 PM
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Hello everyone,

thank you all for all your posts, it does really help!

I am trying to follow your advises, I avoid to induce symptoms and stay away from medical web sites. I am only allowing myself to browse this board.

As I explained in my first post, I have some twitching here and there. I see on the board that many people experience this. However today I kind of freaked out because a small part of my tongue twitched for several minutes, then it went away, and later in the day it kind of came back for a tiny moment on another part of the tongue. It looked more like a benign stuff belonging to the usual "muscle twitch about everywhere from time to time" symptom. I was wondering if someone experienced this?

I try to keep telling myself that, objectively, if all these stuffs were induced by a neurological disease, it would mean I have multiple lesions, and all of that without any neurological symptoms. All my 5 senses are fine, my balance is fine (standing up eyes closes, everything is fine, even on only one foot, etc ...), my eyes are fine, my strength is fine, my stamina is fine, and so ... I am lost in my head, it currently consumes my life. I still need to wait ... Also, my rheumy didn't tell me to stop Enbrel, would you consider stopping it because of these symptoms? I have been on this drug for like 8 years, maybe a little bit more.

Another mechanical argument for the tingling, is the following. I noticed (not on purpose, actually I was on the phone, scratching myself), that with my left arm bent to my left ear, as in while holding a phone, if I pressure the bottom of my left shoulder blade with my right arm, I can feel a small tingling in my left elbow. So there is definitely something going on with my nerves and tissues in my upper back.

The thing that I regret the most is to have entered a mad freaking out loop since my iritis (first for me, after 9 years of AS). I am like 99% sure that it would have been totally different on the psychological level AND symptomatic level if I did not lose my mind with the iritis and started to look up dramatic stuff on the internet and try to connect everything with others auto-immune diseases. Truly, I am really angry against myself.

I hope I will hear more opinions and advises on this particular problem or how someone went through the same thing psychologically. It really helps to talk!

Cheers to everyone.

Last edited by pinou; 06/29/18 05:28 PM.
Re: Tinglings and others?
pinou #280678 06/29/18 06:19 PM
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I've never had iritis so far (9 years of AS too!), knock on wood, but I can very well imagine myself freaking out like you did. Although my ophtalmologist once told that he's never seen, in his entire career, someone who went blind or even permanently damaged his eye because of iritis. He said that yeah, technically, it can happen, if left untreated, but that's like saying that you'll go blind from diabtetes if left untreated.

I'm not qualified to give advice because I have a tendency to panic myself, but I can fully understand what you are going through. I just feel like I'm coming out of a similar freak out after about six weeks.

You know one thing I noticed, is that when new symptoms arise, I stop caring about or even feeling my previous symptoms. I'll give you an example: I was heavily focused a few weeks ago on my back pain. Then my neck started hurting, and that was more important to me so I kinda forgot about the back pain, almost. Not saying the pain went away totally, but shifting my focus made it way more tolerable. Then my neck and back were better, but I have gastritis now from NSAIDS, and I'm 100% dedicated to analyzing every stomach cramp and self-diagnosing Crohn's disease or a cancer. My back pain? I almost forget I have it.

Case in point, as I was reading your post, I started feeling a burning in my eye and almost panicked about iritis!

But when my stomach feels better, guess what? I'll probably start complaining about my back again. Or about my anxiety, my feet, whatever. You get what I'm saying? We have this disease that manifests itself in small and big ways almost daily, so focusing on every ache we get will drive us crazy. You have to accept that you can have some weird or annoying symptoms for a while, but that they'll probably go away in a few days or weeks.

NOT saying ignore your symptoms. I'm saying that if you develop a disease, you'll know it. Like your iritis. You didn't ask yourself if you had it. It was obvious. Same thing with MS. If you had a lot of lesions you'd have neurological symptoms like you said.

Look I really, really don't want to minimize what you are going through, but anxiety is the worst thing ever. It can make you unable to deal with your disease on a mental level and that's really the most important part of having a chronic disease.

For me, I took some anti-depressants, asked for a few weeks off work, dropped Internet searching completely, walked and stretched every day and went to my rheumy to adress my concerns. And more importantly, I started seeing a therapist.

Obviously I'm not a doctor but I've lived through what you are describing and based on personal experience I could almost guarantee you don't have MS. I'm pretty sure if you broke your knee or something tomorrow then you'd stop thinking about MS and your symptoms would vanish.

Take care !

Last edited by seymour; 06/29/18 06:21 PM.
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