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Is This MS? Or CFS/ME

Hi everyone,

My husband has been off work ill for 7 months now, we have had numerous tests been seen by Endrocrinology, Cardiology and have the sleep clinic next week, after which CFS/ME will be diagnosed

The thing is no one has ever mentioned MS. I gave asked for head CT scans and MRIs but the GP and consultants so far has said they won’t do that as they don’t know what they as looking for. I have been looking at the symptoms and the symptoms fit particularly the MS Hug which is the best descriptor of the pain my husband gets in his chest we have come across. This pain was why we were sent to cardiology, but his heart is working perfectly.

He has had issues on and off since his late teens, fatigue, dizziness etc that just comes on and he has learnt to live with it. He just sits down when he feels dizzy. He is now nearly 42. Ever time he went to go in his 20s they said he worked too hard/ overweight/bad lifestyle.

In 2014, he was in a situation he couldn’t sit down and he passed out. After this he developed a more persistent fatigue which sent him off work for two months, in the end he forced himself back to work as he was self employed and they couldn’t find anything wrong and told him to come back if he passed out again. Fast forward to now and he is worse than ever. He has no energy and goes over the door maybe 2 or 3 times a week. He is not overweight anymore as we joined a slimmng club but even thoug he has lost 3 stone he feels no better.

His symptoms are fatigue, hip and joint pain, back pain, he has issue with clumsiness (he is the least clumsy person I know) He has cognitive issues, struggles to take in information, hold a train off thought. He does suffer from tremors and has for about at least the last six years. Has trouble with temperature regulation.

There are no issues with bowel bladder control.

Do you think MS could be a factor ?

Many thanks in advance

Hi Lisa, I’m sorry your husband, and you, are going through all this.

I’m also sitting with a CFS diagnosis (plus a couple of extras) at the moment. The thing is, without MRI etc it’s pretty impossible to say what the underlying cause is and folks here will often say that even with very MS like symptoms they can’t say if it is or not. The symptoms of CFS and MS can be very similar. I was being checked for MS until the brain MRI came out clear late last year, but am seeing the neurologist again in May.

The passing out/dizziness element could be POTS which can go hand in hand with CFS, it may be worth asking about that?

It may be worth writing down all your questions before you see the doctor next so you can at least ask them.

Best wishes to you both, it is a bit of a rough ride, but sharing with others here who understand the limbo factor and horrible symptoms, whatever it turns out to be, is a good thing! Xx

Hi Lisa, ooh how I feel for you and your hubby. There are a few types of MS and all are difficult to diagnose. Your post rang a bell with me because it took various GPs, 3 hospitals and lots of types of “Ologists” called Consultants.

All I could do was explain how I felt, all different symptoms, like jigsaw pieces, that none of the specialists put together. It took 3or4 years to see a brain psychiatrist (useless as he only asked simple questions as if I had dementia. I was about 53!! Years passed. Eventually I insisted on seeing someone else, it was a Rheumatologist who diagnosed Fibromyalgia. When I had stiffness in one hand & struggled to speak, my GP sent me to a Stroke Clinic. Eventually, I saw a Neurologist, had an MRI, a Contrast MRI, a Lumbar Puncture & evokes potentials eye tests.

Months passed between each test, waiting for ALL results took over 11months. In Nov 2011 I was diagnosed with a type of M.S. Then around 2013/14 it was confirmed as Primary Progressive Multiple Sclerosis (PPMS).

I’m not suggesting your hubby will be the same, but take heed of the system. You have a voice to insist your hubby;

Sees a Neurologist, suspects a type of MS based on so many different symptoms (which happen to match those you’ve read about in MS leaflets). Chronic Fatigue means he sleeps a lot or feels too exhausted to do the simplest task, this sleep may be 15hours but only a few hours will be quality sleep. The rest could be non-restorative sleep.

May I suggest you make some phone calls and go to speak to your hubby G.P. Get the ball rolling. I sincerely hope it is not MS because there is nothing to stop or cure this cruel disease.

The tests I’ve mentioned will either confirm MS or rule it out completely. At least you’ll get some reassurance. Take care, Chrissie x

If you believe it, insist on the tests. Ok…reality… Insist on a referral to neorlogosist . ! Only they will order tests to rule in/ out ms.

Hugs, hope you find an explanation soon.

Be aware that loads of Heath conditions have simeler symptoms to ms

Thanks for your reply I appreciate your thoughts and am sorry to read that you also are sitting in limbo with a CFS diagnosis. he was tested for POTS and that came back negative. its always a dilemma whether to be disappointed of not when something is ruled out as you just want something to be wrong so it can be fixed! I will ask the Dr re a referral to a neurologist the next time he is in. thanks again for your kindness.

Hi Chrissie, thanks for you reply, what an ordeal you have been through. I am glad they have gotten to the bottom of it for you but saddened that it took so long and what the diagnosis means for you. You have definitely given me the confidence to go forth and ask direct questions to ensure we have this either diagnosed or ruled out. I will be asking for that referral to neurologist as soon as possible. I will contact the MS society for advice as well. thanks again for your advice and kindness xx

Hi Sarah thanks for your post and your caution that lots of health conditions have similar symptoms, it helps to bear this in mind. I can get a bit carried away at time and there have been other things I have felt sure he had but have been ruled out so yes I should slow down! but as you have said we need to know one way or other so need to ask for the tests. Thanks for taking the time to reply and you kindness