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No symptoms

My first post here. A month ago I had an attack of vertigo and ended up in an emergency clinic. I had severe chest pain, couldn’t take a deep breath and the pain radiated into my left arm. I’m 61 so the doc’s first thought was heart attack. But found a thrombus in my left internal jugular vein with emboli flooding my chest, lungs and abdomen. Then as an aside they did an MRI. Instantly the mood shifted and they said I needed to go do my doctor ASAP. It took a while but the neurologist says it’s MS, no doubt about it. No lumbar tap as I’m on blood thinners because of the blood clots. But the doctor says it’s not needed, the MRI (actually 3) confirms MS. I’m scheduled for one more round of blood tests for the clotting system. Then I take steroid injections for three days then start Tysabri, one injection a month for life.

Reading__MS, a Guide for the Newly Diagnosed__, I don’t have any signs. No eye problems, no weakness in either leg, no muscle spasms, the vertigo responded after a couple days on Pradaxa. But I’m reading that I might have been having signs going back years or decades. Problem is I’ve always been a hypochondriac. At age 5 I read a poster, the 7 deadly signs of cancer, in Look Magazine. At the time I had a thickening under a nipple and was convinced it was cancer and wouldn’t stop screaming til my parents got me to a doctor.

20 years ago I developed foot drop. Being a hypochondriac I researched and found an abstract on MedLine; Peroneal Nerve Entrapment as a cause of Foot Drop. In surgery they found the nerve was 90% dead. Then I read sometimes the only sign is alteration of the olfactory system. For years I’ve had periods of olfactory hallucinations. That’s smelling things that aren’t there. All signs that could relate to MS, according to the neurologist. Years ago I had weakness in both arms causing me to drop tools while doing surgery. I’m a veterinarian. I had surgery on both lateral olecranons, commonly done for tennis elbow. I’ve never played tennis. Another sign of undiagnosed MS?

kaypeeoh

Hi there,

I didnt realise that MRI alone could fully confirm MS ?

When I was diagnosed ( just about 4 years ago), I had a number of tests done over about 12 months, MRI, Lumbar tap, blood tests, and obviously the history of my symptoms currently and in the past.

Actually looking back my symptoms probably started over 20 years ago but at the time were put down to other things, like trapped nerves, an inflamed disc, even carpal tunnel when my hands were playing up.

Up until the point of being diagnosed with MS everything was either put down to something else, ignored or it just went away by itself, but today my neuro is convinced that all the previous problems were signs of MS starting up all them years ago, it’s just that unfortunately MS was not as “well known” then as it is now.

I’m guessing your current MRI at the emergency clinic showed up some lesions, hence a neurologist getting involved and “confirming” MS ?

Over 20 years ago I had issues with the soles of my feet having pins & needles, but only in the shower, odd but true, so I was sent for an Xray where I was told I had a inflamed disc which was causing the problem, however after a few months the pins & needles stopped with no other issues for years and years, that was until until my hands and finger tips felt a bit 'rubbery" now and then, which I just ignored and got on with for a couple of years (typical bloke).

Then about 8 years ago I had an MRI done (on the brain) because my hands kept going numb all over, giving me problems picking things up, it was more annoying than anything else, anyway the neuro at the time gave the all clear on the MRI and suggested my problem was carpal tunnel , I was offered surgery but didnt bother as the symptoms were intermittent.

4 years later and completely out of the blue I started getting a weakness in my left leg so went to my GP, who seemed a bit more concerned than she normaly would, and suspected something else, so she rang our local MS clinic there and then in front of me and explained my symptoms and history for to a neuro, she (my GP) just wanted someone to look at that old MRI scan, he pulled up the old MRI that I had done 4 years previous, took a look and immediately called me in the next morning.

It was a spur of the moment phone call made by my GP at 5pm (I was her last patient of the day), and answered by a neuro who was finishing up his clinic for the day that changed my life forever.

Basically, the scan of my brain was clear, however lower down the scan had just caught about 6 inches of my upper spine, it was here that this second neuro could just pick out what he thought might be a very small lesion.

He suggested that this might be MS and in fact if it was it had probably been with me for many years taking into account my history with the pins & needles thing, the altered sensation on my hands and now this leg weakness.

So that was two neuros both from the same hospital and same department, both giving different opinions.

The difference was that the second neuro who looked at the scan was specifically looking for MS lesions, mainly because of my past history and current symptoms, but even then It was still about 12 months of newer MRI’s and other tests that finally led to my diagnosis of R&R MS.

The thing is that MS can strike at any time, even many many years ago, then as quick as it came will hide itself away and lay dormant for possibly years and years until it decides to reappear and ruin your life.

In fact during all the further testing (aprox 12 months), and probably a further 6 months more, I actually had no symptoms what so ever, everything had just settled down back to “normal”, I even doubted the neuro’s “opinion” and the “positive” tests that were now starting to come back that this was actually MS.

And even if it was MS, I had nothing to worry about because it came and went without no big deal !!!

How wrong was I eh !!!

Thanks for the note, I was hoping my history was an anomaly, but your history is too similar for coincidence. Trying to keep it short, I only shared the main problems. But over the years I’ve had much more, such as back pain treated with ultrasound-guided steroid injections, and rotator cuff problems I decided to live with rather than more surgery. Then three broken ribs from falling, two broken toes from other falls. I always assumed it was my innate clumsiness. In the medical field they try to find one cause for all symptoms. I suppose MS explains it all.

kaypeeoh​

Sorry, I didn’t address your first question. CSF from a spinal tap looks for oligoclonal bands. If found that’s confirmation of MS. But in my case the neurologist says it’s not needed. She thinks it’s more important to start treatment now in hopes of preventing new lesions. So the problem now is every burp or fart has me asking myself, “Is this a sign of a new lesion starting…?”

kaypeeoh

I’m (just!) 65. I was dxd with RRMS at the end of 2014 after some problems I’d had in September. Things started in summer 1997 (thinks the neuro). I was then dxd with fibromyalgia but it quietened down after about two months and I kind of forgot about it.

Then in September 2014 I fell unexpectedly and was dropping things. I attempted to get to the bottom of things and it turned out to be the MS.

That dx made loads of other health issues make sense. Of course, not everything is because of MS, but a hell of a lot is, to my mind!

Louise x

So I’m starting the MS treatment merry-go-round. Had an IV infusion of solucortef yesterday. I’ve been on Pradaxa, a blood thinner for nearly a month. My arm bled copiously after the nurse removed the IV catheter but stopped the bleeding with a pressure wrap. I’m a veterinarian and went straight to work after. There while giving a rabies vaccination the patient managed to bite my arm even though the owner was holding him. Later that day another angry patient objected to a rectal thermometer by sinking all four canine teeth into my arm. Later today I’m supposed to go back for a second infusion. I wonder how they’ll react to my three compression wraps, the first one the nurse put on yesterday and the two I put on myself.

kaypeeoh

Wow! I’d suggest you hand a muzzle to the owners to put on their dogs, before treating them.

Second steroid treatment yesterday. The nurse was amazed how well the bite wounds had healed then I reminded her I’m on high-dose steroids. After today’s treatment I got a miserable headache. My wife reminded me I had oxycodone left over from the first attack last month. I took one which stopped the headache but then I got severe pain all along my left arm from fingers to axilla. I was close to a trip to the emergency room when I remembered I had 800mg ibuprofen from an old running injury. I took one and was able to sleep. Today the doc said I probably dislodged another clot. They moved the catheter to my other arm and lowered the dose. Doing fine now, no more steroids for two weeks.

kaypeeoh

The doctor felt I was depressed and added Cymbalta to the regimen. It makes me hyper, enough I have trouble using the laptop. Also trouble sleeping.

kaypeeoh

Progressive Multifocal Leukoencephalopathy (PML) is my latest fear. Caused by the JC virus that live benignly in 50% of the population. Once activated by Tysabri is kills you in less than a month. I had an attack of vertigo two months ago. Never had anything like it before. But after 2 days in hospital I was back to normal. I’ve been fine since. No more attacks. The neuro says the MRI shows I have an advanced case of MS. I’m reading McDougall​’s book that claims diet can cure MS. Tysabri is designed to prevent future attacks. But so could McD’s diet, if I believe him.

​I’m scheduled for more steroid treatments this Monday, Tuesday and Wednesday. Then on to Tysabri. Am I risking future attacks of MS by not treating? Next week I get tested for the JC virus. If negative, I should go forward with the Tysabri. If positive, I don’t know what to do.

kaypeeoh

You say you’re a hypochondriac. Well, maybe so, but it seems to me (from the small sample of my own circle) that hypochondriacs are the world’s worst at recognising when they actually are ill, blind-sided as they sometimes are by busily worrying about imaginary things while failing to notice (or even acknowledge!) the real ones.

I am sorry that you have been having such a rotten time of it.

Alison

If you are JCV+ it doesn’t mean that you will will develop PML and, equally being JCV- doesn’t mean you won’t (obviously). It simply affects your risk. Whereas, it used to be that, if you tested +the you were taken off Tysabri it is no longer so binary. The individual’s virus “load” and how it affects the risk is much better understood now and is carefully monitored.

I am now on my 4th year of Tysabri and I developed JCV 2 years ago. My virus load is monitored every 4 months and my current level is low and puts me at a similar risk to a person without the virus who has been on Tysabri for the same lenvth of time. I also have regular (6 monthly) MRI scans. All in All, with the regular monitoring I have from my Neuro and the MS team who administer my infusions I feel VERY safe and confident with the treatment.

Tysabri has worked great for me and I hope to be able to carry on with it for as long as possible. My MS has been very active with catastrophic and disabling relapses before diagnosis and start of treatment. No DMD is a CURE (maybe 1 day though!) - they are simply like a bullet-proof-vest if there are bullets flying. You might be lucky and dodge a bullet but you wouldn’t go into a war zone without 1 would you?

And trust me, the steroids are the worst bit of the whole Tysabri experience. If you can get through the course of them, Tysabri will be a breeze.

Could it be you have not got MS at all; just a possibility it’s APS; which has many names; sticky-blood; Hughes Syndrome.

This complaint mimics MS symptoms; does cause lesions; that was why they jumped to the conclusion it was MS. Everything is being kept at bay because you’re taking blood-thinners.

Only a possibility but ask for a blood test for Apl antibodies; see http://www.aps-support.org.uk/ my theory is you don’t get headaches etc. because your blood has the answer already.

George

Harking back to the original post, I have suffered tennis elbow despite not playing tennis since secondary school. At the time I did some research to try to understand why I had it. I didn’t find anything that explained why I had the problem, but I discovered that the people most likely to suffer from it are violinists! My tennis elbow cleared up on its own as mysteriously as it came.

Thanks for all the notes. During the six-hour drive down to Salt Lake City for the JCV test I read McDougall’s book The Starch Diet. He makes a good case for a vegan diet as a treatment for MS. Anyone care to comment? kaypeeoh

I start the next go-round of IV steroids later today. I only felt positive results during the last steroid treatments; Less pain in my ankle. Less irritation from the sun in my eyes. I’m still hoping for feedback from my post about the vegan diet I’m trying.

kaypeeoh

Kaypeeoh

Interesting read your first post in this thread-No Symptons.

I like you sometimes think I am a hypochodriac but hey, hey we all have to look out for ourselves. I am also a qulified Biochemist and have always been keen to monitor my health. I have been diagnosed with RRMS about 2 years back and am on Tecifedra which thankfully has shown my RRMS to be in remit. However I do have some awful days with lower back pain and pins and needles in both legs from the knees downwards.

Historically I have always had back problems and sciatica which was also periodically giving me pins and needles in my lower left leg. About 20 years back I went to an osteopath whom treaed my sciatica but I do remember clearly him saying one day to me “you have something strange in your system which I cannot explain”. Was this then the onset of MS???

Then it was only 2 years back after more back trouble my wife commented “you are trailing your left leg and go to your GP” My GP immediately suspected MS and after a battery of tests (MRIs) the feared MS was diagnosed at the age of 55. However thinking back I wonder was that statement by my osteopath now ringing true?

Regards and keep good.