A few questions for the experts

New diagnosis and before diagnosis
1

Hello,

I am currently being evaluated for the possibility of MS (among other things including thyroid, myopathy, etc.). I just have a few questions for the folks here, as some of my symptoms are definitely MS-like but with some caveats. To make a long story short, I suffered from what in retrospective could have been a CIS in 2010 (right leg went completely numb for less than 24 hours without cause) followed by a “relapse” in late 2011 which lasted for 3 months, although in this case the numbness was only partial but I also had occasional tingling and weaknesses in both arms (albeit never at the same time). One year later (almost to the day), I began having a flurry of other symptoms inculding tightness in my left calf and hamstring, twitching all over my body, shooting nerve pains below the knees on both legs and back/hip pain which would either be left or right (but never both at the same time). Up to this point my main concern was a back injury, as I hurt myself shortly before the 2011 relapse but began suspecting MS. However, my idiot doctor ordered only a lumbar MRI which came clean. I have since learned that lumbar lesions are rare in MS, and over the past few months my symptoms have broadened. Currently I am suffering from right shoulder/arm tiredness (as if I had gone to the gym but only worked out that side), itching all over the body (feels like tiny ants), chills on the left side of my face, and a mild nerve burning pain in my left foot which seems to come on at the same time as the itching. I am also prone to get sleeping in my arms/legs in certain positions after just a few minutes but the numbness I can shake off (AFAIK this has been a problem throughout all my life).

I have a family history of thyroid and circulatory problems and in a recent thyroid test, my T4 was elevated, and a gamma scan showed a slightly enlarged thyroid gland resulting in a “probable hyperthyroidism” dx. However, antibody tests came back negative, and a subsequent thyroid test showed T4 back to normal. In the months before my two “relapses”, I suffered from random chest pains, chest tightness, and palpitations. Immediately after my 2012 relapse, I started suffering from daily bouts of PVCs and even a few cases of atrial fibrillation, especially after lying down at night. As far as I know, these are not typical MS symptoms. I have seen an endo, an internist and a neuro in the past few weeks (not in the UK), the endo suspects a rare case of hyperthyroidism, the internist suspected a myopathy but also raised the MS possibility. The neuro asked for a cervical MRI but noted “nothing obvious” aside from a very subtle reflex asymetry in knees/ankle but seemed more concerned about the twitching, which unfortunately was not present during the exam.

Since I only learned a few days ago the relative uselessness of lumbar MRIs for MS diagnoses, I am likely to have a brain or cervical MRI as soon as I can. In the meantime, my questions would be:

  1. How common are chest/heart problems with MS sufferers? Seems to me if the brains stem has a lesion, this could be a possibility but there is hardly anything on the net about this.

  2. Is a CIS of very short duration normal? My leg numbness in 2010 came on almost instantly (matter of seconds/minutes), same way as when an arm or leg falls asleep (in fact, I was sitting in a rather odd position when it happened). It lasted that way for about 12 hours after when it started improving. By 24 hours it was about 50% back to normal, by 48 hours about 90% back to normal and by 72 hours completely disappeared. GP said it was likely a pinched nerve.

  3. What is the frequency of new symptoms? I get the feeling that MS suffereres may get most of their new symptoms during relapses and a few here and there in between. I’ve been tracking my sysmptoms since January and I get a new one every 2-3 weeks and my current “relapse” is nearly 6 months old but with many of its initial symptoms gone. i.e. the symptoms I have now are vastly different from the ones I had a month ago, or two months, ago. Aside from the parasthesias and muscle problems, I have no “classic” MS symptoms such as fatigue, vertigo, bladder issues, Uthoff’s (in fact, I’ve been in over 30° weather these past days and feel fine), visual problems (aside from floaters which I’ve read are not related to MS), etc. No neuro signs such as Babinski’s, L’Hermitte’s, Hoffmann’s, Romberg’s, etc. and no mobility problems except a feeling of stiff knees from time to time but this hasn’t prevented me from walking/running normally at all.

  4. The endo gave me a beta-blocker as a “test” to see if my supposed hyperthyroid symptoms were relieved. Didn’t work much but two of my supposedly “neuro” issues, a mild tremor in my left thumb and in my right ankle when flexing sideways, disappeared and I’ve had a few days without PVCs as well (and no more than 2 in a day since from an average of 4-5). Do beta blockers cure neuro symptoms or can I safely assume that they were not neurological in the first place?

Thanks for the help.

2

Hello and welcome :slight_smile:

I’m not sure what kind of experts you are referring to in the title of your thread, but no one here has any formal medical training so please be aware that replies are based on experience and what knowledge we have gleaned over the years of having MS / MS-like symptoms. So I’ll have a go at your questions, but please know that I could easily be wrong: I am merely an amateur enthusiast!

  1. As far as I know, there is no official link between MS and heart problems. Anecdotally I can tell you that there have been posts about arrthymia, tachycardia, palpitations and the like in the past on here and that they seem to be relatively commonplace judging from the replies. The theory would be that there is a wonky vagus nerve input, however nothing is provable. You need to bear in mind that arrthymia, tachycardia and palpitations are pretty common in the non-MS population too though.

  2. A CIS can be of any duration, but by definition must be at least 24 hours. I suspect that something as minor as a very temporarily numb leg may not be “counted” by a neuro unless the evidence is strong that it was caused by demyelination (which would require an MRI of that time or clearly older lesions on an MRI at a later date). It’s the kind of thing that a neuro may say, “Oh yes, that’ll have been your MS” to someone who is diagnosed, but not be willing to commit on to someone pre-diagnosis.

  3. New symptoms depend on two main things: what type of MS someone has and how long they’ve had it. Someone with progressive MS may experience new symptoms at any point, but they do not (generally) have relapses. Their symptoms will tend to then stay for good and worsen over time. Someone with RRMS, who has had it a relatively short time, will generally only get new symptoms with relapses. Someone with RRMS (or SPMS), who has had it longer, may get new symptoms at any time because their MS has started to progress also and/or because the level of damage has reached a point where it is harder to work around it.

  4. Betablockers are sometimes used to relieve tremor, irrespective of exact cause. They do help some people with MS tremor, but the effect is often short-lived. Betablockers are also used to relieve lots of other things too (e.g. migraine, arrthymia, IBS, anxiety) so I’m not sure whether or not they helped some symptoms tells us very much.

From what you’ve said, I think MS is unlikely. I say this because of the number of areas of your body that are involved, the way that some symptoms seem to be in one place or another rather than be in the one place consistently and the lack of clinical signs. I also suspect that someone having that number of new MS symptoms in six months would have highly active MS and be experiencing more severe, longer-lasting symptoms.

If someone with MS reported your symptoms, I would expect brain and spinal MRI scans to show multiple lesions therefore, if your MRI scans are clear, I would guess that you can safely discount MS.

Hth.

Karen x

3

Hi Karen,

Many thanks for your input! I’m having a brain MRI done later today and should have the results by tomorrow. Should have a cervical as well but I’m running out of $$ (not in the UK right now so going private, but at least glad I’m getting things done quickly).