Let’s Compare MS Symptoms, and How We’re Handling Them

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We all know, because we have heard it so many times, that MS is not the same for everyone — that no two people have exactly the same combination of symptoms.

symptomsThat got me thinking the other day (pause for call-outs or derision) about the number of symptoms there are, and which ones I have to deal with.

As a start, I headed over to the website of the U.S.’s National MS Society. I found an imposing list of 22 symptoms. But how many affect me? What do I do about them? And how do you manage yours?

Fatigue – Oh, yes, this can knock me off my feet. But since moving to Spain, it hasn’t affected me. It might be the more relaxed lifestyle.

Walking (Gait) Difficulties – Probably the most visible part of the disease for me. My left side is affected, making walking difficult. I am pleased to say that my Vitamin D supplement appears to be helping me around the house and walking short distances. Fewer falls, too. Over longer distances, I still need a wheelchair — the great folding lightweight power chair I bought.

Numbness or Tingling – Yes, mostly in my left hand. I cannot use that hand to hold anything.

Spasticity – Having looked up the definition, I seem to have been spared this.

WeaknessYes, mainly in my left knee but, again, apparently improving with Vitamin D.

Vision Problems – No, fortunately nothing yet.

Dizziness and Vertigo – A difficult one to answer, but I’ll try to explain. I rarely suffer from dizziness, but my balance depends on being able to see around me. In darkness, I am much more likely to lose my balance.

Bladder Problems – Yes, both infrequency and urgency. These are controlled mainly by medication, but if I’m going where public restrooms may be difficult to find, I wear a pad to be on the safe side.

Sexual Problems – Perhaps the most difficult symptom for many to discuss. Ok, so here goes: Yes, I have sexual problems linked with erectile dysfunction. But I still have a full and fulfilling sex life. How? Easy, Lisa and I talk. We understand each other’s needs and we both end up happy.

Bowel ProblemsThat’s me, but no risk of incontinence here. Constipation is my problem. I take laxatives to overcome this.

Pain – Fortunately, no. Nothing beyond aches and pains that can affect everyone.

Cognitive Changes – Not in the slightest. Just as alert, aware, and understanding as ever.

Emotional Changes – No. I am emotionally stable, calm, virtually worry-free, and happy.

Speech Problems – None, apart from an English accent.

Swallowing Problems – None. You serve it, I’ll swallow it (as long as I like it).

Tremor – None.

Seizures – None at all, but I take a daily dose of anticonvulsive medication because I also have epilepsy. Even so, no seizure for more than 40 years.

Breathing Problems – Yes, shortness of breath if I try to do too much. I find that sitting down gets me going again soon.

Itching – Occasionally, particularly after going to bed.

Headache – Extremely rarely, probably less frequently than many people without MS.

Depression – Never! Life is worth living, so live it.

Hearing Loss – Eh, what? No, seriously, Lisa says I have bionic hearing.

So, how are you getting along with your symptoms?

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

 

Getting to see neurologist proves not so simple

Ysbyty Gwynedd (Gwynedd Hospital), Bangor, North Wales. Place of my MS diagnosis and later consultations with MS nurse.

Ysbyty Gwynedd (Gwynedd Hospital), Bangor, North Wales. Place of my MS diagnosis and later consultations with MS specialist nurse.

Three or so years ago, I was sitting in a North Wales regional meeting of the UK’s MS Society and distinctly remember a society staffer saying that everyone with multiple sclerosis had a right to see a neurologist. If we wanted to see one, we only had to ask.

Well, in my case, I had not seen a neurologist for years having been transferred from him to seeing a specialist MS Nurse, had only ever had one MRI scan and that was prior to diagnosis in 2002, and had only ever been told that my MS was ‘benign’. In fact, at diagnosis the neurologist said that he did not expect my condition to deteriorate any faster in the future than it had in the previous 25+ years.

If I wanted to see him again, just tell the MS Nurse, I was told.

As is MS’s way, it did get worse and three years ago I was seeing the North Wales MS nurse every six months. So, on my next visit to him, I asked to see a neurologist. His reply was to ask me what good I thought it would do.

My reply was that I’d like to know exactly what type of MS I had and to discuss any medications he might think should be prescribed for me. The nurse’s reply let me speechless, not something for which I am known. He said that I had had RRMS but now had moved on to SPMS and that it was unnecessary for me to see a neurologist as there was no medication suitable for me.

Let me remind you this was a nurse, albeit a Specialist MS nurse, telling me what sort of MS he thought I had – without any further tests. It was just his opinion, and he blocked me from seeing a specialist doctor. Fortunately, this particular man has moved on now and North Wales has a new MS nurse.

Having moved from the UK to Spain, I now have to ask my new GP to refer me to a neurologist here. Maybe, I’ll now get a second MRI – 14 years after my previous one – and even find out exactly what type of MS I have.

Watch this space for further information.