angelbum 30/03/15
Last reply 3 years ago
tingling numbness

Hi all hope you guys have had a good enough day well as good as it gets with ms

I just wanted to touch on the subject on numbness tingling paralyzed symptoms .

In the beginning of onset of ms symptoms these were very strong in the first 8-9 years when I took brief relapses but the intensity was unbearable .

As the years have went by the mobility balance fatigue memory pain stiffness blurry vision have been more prominent on a frequent basis and while going through relapse the intensity of these symptoms increase x10

What I would like to know though is the symptoms you experienced in the beginning are they the same for you years later?

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angelbum
3 years ago

Or do you think the onset say fist 5- 10 years have more intense symptoms ?


angelbum
3 years ago

But then it changes to the struggle phase where you can’t move around as well etc.

I hope you understand I’m trying to explain best I can . It’s quite a challenging illnesses to explain at times


krisp
3 years ago

I’m only into thre first months of this so I’d be interested to see people’s answers on this
Over the months the nerve pain I get has been quite painful, so you can guess what I’m hoping is the answer on this
What’s it like for you ?


stumbler
3 years ago

These bodies of ours can get pretty good at tolerating feelings, both good and bad.

The more we have to deal with something, the better the body copes. We can get used to all manner of aches and pains…….


angelbum
3 years ago

its just when I first started to take relapses when I was a teenager the were very powerful in feeling like the pin in needles and face pain attack although they only lasted a few days for me the intensity was unbearable but now I haven’t had any of those types again and that’s me had it over 20 years now it mote subtle but more debilitating physically more fatigue pain memory cognitive balance dizziness on a daily basis .
When I relapse I do get pin in needles although not constant but I think they way it effects me is a lot different from the presenting symptoms I experienced . I have not had any arm paralysis again since in my 20s but also I’m a lot clumiser in dropping things and banging into edges of tables walls etc which results in a lot of bruises

Strange the way effects everyone same but different


angelbum
3 years ago

Going back to my 20s I did get a lot of nerve pain in legs back and have a lot of problems with spasms . Particularly my back and legs and also during my relapses my arms curl in at night while sleeping this is very painful . Lot of the time while in a relapse I will use wrist splints to help the pain a bit .still get all these pains today .

Another pain or sensation should I say I got any my 20s was a feeling of water spilling on my leg . That one freaked me out a little but I haven’t had that again thankfully x


krisp
3 years ago

Hi it’s interesting to here this as I stated I’m not diagnosed yet but was terrified because of the intermittent leg pains not cramps just a tightness
Are you saying you had these as part of a relapse and they remitted early on?
Sorry to be a pain just nice to have some sort of info, well not nice, I’d rather we were comparing cake recipes at 70 yrs of age running around the local running track but hey ho


wilf
3 years ago

Angelbum hasn’t been diagnosed with ms so pointless comparing symptoms in my opinion.
Symptoms come and go while in remission, just have to learn to live with it. No point fretting over the past, live in the present and accept this as the new normal.


fi70
3 years ago

Wise words Wilf, unfortunately sometimes easier said than done


Anonymous
3 years ago

@angelbum, I am REALLY very sorry to hear of your incredible suffering especially starting at such a very young age. I was obviously much luckier to have been spared until later in life. I had terrible pain issues in true RRMS form for almost 15 years. I was finally DX’d after the mother of all relapses for me then started tysabri. It helped greatly. I chose it after a lot of research and belief that there had to be help out there! It’s been a long 10 years since then and a series of medications. I still find myself alone, in the middle of the night, sometimes screaming at the walls because of some new pain. It can be almost anywhere and at any time. I can only go on because of my stubborn belief that there will be something in my lifetime to beat or greatly help our situation. I came to that conclusion after exhaustive research which over 3 years ago discovered impressive results of clinical trials for a drug called alemtuzumab, now known as lemtrada. I tried then and failed to get into a trial. I followed a similar path years earlier and did make it into a trial for BG-12, now known as tecfidera. I benefited from that drug until I could not tolerate it anymore. You can get a head start on the biggest advancements by participating in a clinical trial. MS sucks and I throw caution to the wind and try these drugs after careful research to take an informed approach at defeating it. I have to. It’s what keeps me going. I am more excited about what I have heard and read about lemtrada than anything before it. Medical experts from more than 40 countries have reviewed that data and approved lemtrada as a powerful treatment of MS. I hope to add my name to the many that have already been profoundly helped by it. I am in the US where our FDA refused to approve lemtrada for almost a year after most countries. Thousands of MSers petitioned them successfully to overturn their decision. They all knew the destruction of MS and passionately believed in lemtrada. I think it is useful to direct my pain and energy to these types of pursuits instead of chronicling my personal suffering and losses. It is the only reason I can get up to face another day.


krisp
3 years ago

Hi wilf I’m confused? Can you explain?
I’m undiagnosed too but a lot pointing towards it, I dont understand what you meant?


wilf
3 years ago

Sorry krisp, she just annoys me, endlessly questioning is this ms, looking for a cause, even when the doctors told her it wasn’t ms.

I know the waiting is horrible and long but only a doctor can give the answer. We’re just living with it as best we can.

Wish you all the best in your wait, hope you get an answer soon x


krisp
3 years ago

Hi wilf no offence to me but if she’s in limbo as I am I know how hard it is and I can’t imagine that people shooting her down is doing her any favours. Regardless of what it is she’s going through, I can guarantee you it’s not a nice thing to be going through


Anonymous
3 years ago

@krisp Ditto! That was a very tactful way to say that. Thanks from all, I am sure.


Anonymous
3 years ago

@angelbum, Curious about your status. Have you seen an MS expert? If so, why are they unsure after so many years of reported attacks? Clinical attacks count too. Have you had MRIs with or without contrast? If so, was there no observable damage? Don’t question your experiences. I just hope you are getting proper help. I wish you the very best!


angelbum
3 years ago

Hi all I have lesions I’m going back to a neurologist again next month hopefully to get answers why ? I do have ms when you live with it . You know you can’t deny its not there it’s not how this disease works . You are reminded everyday of it cause you have all symptoms .

I got it an early age I can’t help that the doctors were inexperienced and never caught back in 1995 there was an still is little knowledge of ms in childhood .

I’m now struggling to walk so prob now turning secondary .


angelbum
3 years ago

I have T2 superintendent lesions I also had nerve conduction tests done and found a slowness in brain to leg with no explanation at all . I also had right side paralysis of my arm age 13 . I took another attack where speech vision motor walking etc went I got taken by ambulance and discharged no scans nothing at the time do you really think this right ?


angelbum
3 years ago

Hyperintese I meant


angelbum
3 years ago

Ms expert in aberdeen doubt it ? We have neurologists but nobody like you get down south


angelbum
3 years ago

I have only had one spine and head scan so I would think I should get another to see if any change that would make sense


angelbum
3 years ago

@wilf I have a hard enough time with this illness as it is without listening to your snidy comments which is just a pinch compared to ms .


angelbum
3 years ago

@wilf the doctor hasn’t said it’s not ms where you getting your information from it would be great to know


angelbum
3 years ago

There seems to be more professional care in USA and Australia . We here in UK left to suffer .


fi70
3 years ago

I think Angelbum you have been unfortunate with the specialists you have seen thus far, if I was experiencing the symptoms you describe for that length of time without a definitive explanation I would be very upset. However I do need to speak up for the neurologists north of the boarder I am from Dundee and my neurologist is excellent and specialises in MS and held in high esteem globally, I don’t imagine there are many who are any more knowledgeable on the subject


angelbum
3 years ago

I haven’t had any with contrast


angelbum
3 years ago

Course I’m upset I’m more than upset having to live with it is one thing …..without a diagnoses is shocking ! I’m suffering


Anonymous
3 years ago

@angelbum, I think you should become friends with @fi70 and see who her neurologist is. It is imperative that you find a GOOD MS specialist. You need to get a DX and an RX for a DMT asap! You don’t need to waste anymore time going down the blind path you have been going. A specialist should be able to rule MS in or out in a few days, not more decades. Your poor experience has created the wrong mindset about modern methods to DX MS. Disregard comments and advice from @wilf or others that are mean spirited, cold, and misinformed unless we were living in medieval times. Get busy and find some help. Fi70’s neurologist should be able to refer you to reputable MS specialists if you cannot get in to see him/her. Best Wishes!!


angelbum
3 years ago

Thank you very much for your support x


krys
3 years ago

Hi, just a quick comment for angel bum. Have they read your scans correctly. I underwent 2 mri’s and a contrast CT at my local hospital and was told they were normal,despite having symptoms i.e double vision for over a year, pins and needles down the one side of my body. The neurologist referred me to different neurologist who reviewed my scans and found multiple lesions. I have now been started on tecfidera. Maybe it’s time to get a second opinion. Good luck.


angelbum
3 years ago

Last time we were are the neurologist she said she couldn’t rule it out were going back to ask her why she cant ? Shouldn’t they be able to say you have or haven’t got it ?


Anonymous
3 years ago

Forget that neurologist/nurse practitioner @angelbum ! You need an MS specialist! Your current doc has been eliminated by the incompetence demonstrated with your case alone. MS can be difficult to DX but it is inexplicable that after all of this time you are still without a DX. It is incumbent on you to move on now. Ask fi70 who her doc is and call for him/her or get a referral to someone from them. No more waiting for an inexperienced doc to NEVER figure it out!


angelbum
3 years ago

@mbrsinc thank you . We will keep on tapping away till something is done . We won’t be going anywhere without a diagnoses . Really it’s a crime i have not been diagnosed and had to insure a lot of suffering not only with the disease and lack of medical care but my continuing search for diagnoses when my medical history will back up this diagnosis . If I didn’t have lesions well yes it may be something else . The last time at the neurologist we asked her to rule out ms she said she couldn’t . Alarm bells ringing yet ? @msrsinc what’s se mean ? You spoke about this on another thread regarding pain relief and tramadol I think it was the thread on gabpentin ? I’m sure one day I will have a diagnosis I can’t go on Luke this forever . Thanks again joy

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