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Advice please......

Hi, I am new here and am desperately seeking any help I can get from MS sufferers.
My 29yr old son was diagnosed with Fibromyalgia 7 years ago however we do not thing this the correct diagnosis an both his physical and mental health are deteriorating quicker than they should with Fibro. Due to him being 6ft4" tall and covered in tattoos, I believe he has been fobbed off in regards to his very real illness. We pushed recently for a Brain and Spine MRI due to him having almost every symptom of MS, this showed no legions and he was told this meant he could not have MS, is this true? Some of his symptoms include: Chronic pain in all joints especially his hips and back, weakness in his muscles sometimes making him unsteady on his feet and unable to grip well, twitches all over his body, heat sensitivity unable to control his body temperature with different parts of his body different temperatures, cognitive problems, numbness in genitals, impotency, pain and needles lifting his legs, depression, anxiety, mood swings, fatigue due to not being able to sleep at night…can anyone relate to any of this??? Should I be pushing harder for a second opinion, any suggestions for a private neurologist in Northern Ireland?? He has been referred to the Neurology team in the Ulster Hospital as Urgent and I have just found out that the waiting list for Urgent is 227weeks!!!

Hi Fiddlyduck

The waiting times to see a neurologist in NI are shameful and have been long-standing. My guess is that private consultations will also have quite a long waiting lsit, but shorter than for the NHS.

Is there any way that your son can be referred to a neurologist in England or Scotland? Waiting lists in the rest of the UK are not so long as in NI. Maybe the MS Society helpline can give you some useful information?

Hello Fiddlyduck

You should be aware that there are other diagnoses that share symptoms with MS. One of which is of course fibromyalgia. There is always a possibility of being diagnosed with the wrong illness when all indications suggest MS, but it’s also possible that he does in fact have fibro, or something else that’s not directly related to neurology.

As your son has no lesions showing on MRI, the chances are that he doesn’t have MS. The diagnostic criteria for MS are detailed here: McDonald criteria | MS Trust As you can see, the various sub-types of MS all depend on the individual having demyelinating lesions in the brain and/or spine. This doesn’t mean that the lack of visible lesions means there isn’t something wrong neurologically.

It is indeed cruel to have such long waiting times to see specialist neurologists in NI. If you can afford a private consultation with a neurologist, one way to find a specialist is to look at your local hospital website(s). Search under the relevant specialist areas (ie neurology) for consultants. You can then do a search for specific doctors - if they have a private practice as well as NHS, that will be indicated on their website. You would probably still need a referral from your GP, but at least it’s somewhere to start. If you do choose to take this route, see if you can get copies of your sons MRI scan on disc. That way a private neurologist would have a headstart. (And it’s the tests which cost the most money, a consultation shouldn’t cost as much - you’d just need to get the scans to the neurologist in advance of a consultation!)

Sue

Thank you so much Sue, your reply was very informative and greatly appreciated.

Kerry

I am not sure if that is possible, nor am I sure if he would be fit to travel but thank you very much for contacting me as no-one else has, I appreciate it.

Kerry

Hi Fiddlyduck

I really empathise with you and your son on this one - it is extremely stressful and worrying for him and yourself.

My husband many years ago was in a similar situation with a very similar description of symptoms including headaches and brain fog and his doctor eventually tagged it as ME/Chronic Fatigue Syndrome.

A few years later, my daughter but my husband’s step-daughter, was diagnosed with remitting relapsing MS and the symptoms that they both had seemed to be very similar in many respects.

A year after my daughter’s diagnosis, her partner was suffering in a similar way to my husband (again, no relation) and his doctor eventually concluded it was Fibromyalgia.

It was really hard for all of us to come to terms with the similar symptoms that these 3 suffered with - they seemed so alike with layers of overlap but all had different diagnosis and treatments.

From what you have described as your son’s symptoms, and from what I remember my daughter and her partner telling me about their respective symptoms, there was the one significant difference, my daughter had masses of lesions in her brain and spine tissue, her partner had none!

I have found this website helped me to understand the difference between ME/Chronic Fatigue Syndrome and Fibromyalgia -Disease vs. Syndrome in Fibromyalgia and ME/CFS and after reading your son’s situation today, I did a wee bit of research and read on this one. Multiple Sclerosis vs. Fibromyalgia: Differences in Signs and Symptoms. I found them helpful to sort out the differences and the impact of the differing diseases.

Meanwhile, I sincerely hope that your son finds some resolve soon for his very painful condition.

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That, @KatsMum is a brilliant reply to Fiddlyduck. I’m now going to have a look at your post re your daughter (it may take me some time to reply).

Sue

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Hi

Thank you so much for taking time to read about my son and sending such a detailed and informative response, I truly appreciate it and am going to read those links now. Thank you

Kerry

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