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Hi Everyone,

I was born with my left testicle undescended at birth which was subsequently lowered without incident.
When I was 16 years old I realised that I had a rather large right testicle and this kept getting larger until I finally got around to having 200 mls drained and some extra growth removed at 27. This seems to have been without incident also.

I was diagnosed (unofficially) with RRMS at 19 years old (officially at 27). When I was 19 I asked my neuro if the MS symptoms could be related to the undescended testicle. Absolutely not was the answer. Really?

Now at 41 (still RRMS) I have been on Avonex for 8 months with an attempt at Rebif for 3. I can balance my life better with Avonex because it's once a week but I have a symptom which has progressed since I was 19 and that the interferon helps with when I find the correct balance - that of a general weakness in my left side from the big toe up through the right tendon behind the left knee, through the left groin and up through the abdomen and the psoas major. This can cause an obvious limp but when I seem better to others there is always an internal focus upon keeping the control through this 'line'. There always remains a particular lack of strength in that side though.

My questions here that I'm hoping someone can help me with is regarding the effect that the interferon treatment has on making the symptom of weakness on the left side / the limp better and sometimes not : is it possible that these symptoms can only be attributed to the MS or could it be because of a development issue in the womb which has caused a general left side weakness ? Could it be a combination of this ?

My own 'belief' is that it was a development issue in the womb followed by a period of fairly normal childhood health and then a recurrence of development issues during puberty which has then allowed MS to manifest.

I'm also trying to understand how to manage interferon treatment while discussing the relevant symptoms (eg. talking about my leg weakness/limp being caused by MS does not seem to be correct). I have spent years going around in circles trying to understand what's been going on and finally interferons are allowing the main symptoms of my MS to become clearer. This is very good. It is not without side effect difficulties though and I'm hoping that others don't have to be so frustrated by the symptoms of MS as well as the side effect symptoms of this treatment. This forum is already doing a grand job of that. 'My MS' has driven me nuts mentally in the past but I am feeling calmer about it all because I understand things a little better now.

I have found that although interferon treatment can cause negativity there can be positivity to be found in its use too.

Thanks,
Fred

Fred,

It's but impossible to answer your question on interferon's role in managing your MS. The docs aren't really sure of how interferon works within your system when it comes to MS. The results of this drug for MS patients is all over the map with some people getting benefit, some remaining the same and others become worse. The overall efficacy of interferon is around 33% and even that number is often questioned as being too high.

Despite years of research there is still no known cause of MS and certainly no medication that is really beneficial in the long term.

Fred, it is my belief that, until science finds and proves the absolute cause of MS, everyone's hypothesis is equally valid.

If wheat/gluten sensitivity (or even celiac disease) plays a major role in MS, perhaps taking antibiotics as an infant, or even the infection itself, which requires antibiotics, damages the intestines. Perhaps the following info on a Swedish study draws the elements a little closer together:

Children in Sweden faced a Celiac “epidemic” between 1984 and 1996, when a four-fold increase of kids under the age of two reported having the disease.

Experts were left to find answers, which is how a prominent group of scientists and doctors in that country came to study the link between early contractions of infectious diseases and the development of CD.

And their results, finally released last December 2012, are startling.

Children who reported three or more infectious episodes during the first six months of life, regardless of the type of infection, faced a significantly increased risk for later developing CD.

And that risk increased synergistically if these same children were introduced to gluten in large amounts after they stopped breastfeeding, regardless of other environmental factors including socioeconomic status.

This new information not only sheds new light on the importance of recognizing infant infections as an important risk fact for CD, but also gives important insight into the Swedish epidemic and concurrent changes to infant feeding which occurred during that time.

Read more about the study now at: http://www.biomedcentral.com/content/pd ... 12-194.pdf

Do you know the medical events of your infancy?

I can't relate to your experience. But I did have a very late puberty. I was probably two or three years later than most of my peers. This could be from any number of factors like pituitary failure, zinc deficiency, mercury toxicity, ceiliac, etc. I don't know if it's related to MS. I've never heard anyone talk about it. Also, while I've always been thin or skinny or whatever, I've also had a higher than average body fat level. Who knows what causes or is related to what.

Almost 2 years since my initial post here..

I am now on Tecfidera since September 2015 and far more optimistic about it helping me better than the 2 interferons I tried. Avonex had become quite intolerable because of the 'dark cloud' that enveloped me while on it and had become like the effects by the 3rd month of Rebif. A new plaque has appeared in the motor cortex (as per MRI April 2015 - not there Jan 2015), I have some spasticity from the left groin down through the back of the knee, and I started using a walking stick Nov 2014.

Regarding the testicle issue. Since last year, an intermittent 'ballooning' of the inguinal canal on the left has been ongoing (not herniated - I had it scanned a few weeks ago). The scar line from infancy follows the ballooning so it's absolutely certain that I have always had an issue here. I believe that the interferons, although working as they should have to an extent, have inflamed this area and caused my walking to become worse (which would be odd seeing as they are anti-inflammatory).

The causes of the difficulties walking need not necessarily be fully understood but the undescended testicle is a contributing factor. There has plainly been a weakness at the left inguinal canal since birth. I still have lots of questions about demyelination and communication between the nerves and their associated motor functions but my quest for answers is reducing - and this is a relief which is helping to relax any anxiety that I've had (and the interferons certainly confused me and gave me some anxiety without a doubt).

I'm find it very interesting and optimistic that my practising certain hatha yoga asanas (primarily badha konasana) is helping with releasing increased spasticity, strengthening the leg and increasing muscle mass and control, I am walking better and the ballooning has almost completely disappeared. So far, and I've only been doing this for a week. Qigong is looking like a good complementary treatment avenue to follow soon.

Finding a good balance of treatments and medications for a better quality of life IS possible. For me it's coming down to the correct medications along with the correct exercises (along with a good routine of sleep and nutritious diet). I feel like I'm making some progress but working out the specific requirements needed to do this isn't easy and is always an ongoing process.

I'm hoping that I can walk unaided soon. I'll let you all know..

Best of health to everyone,
Fred