Bouts of sudden extreme fatigue and nerve pain Good afternoon, I am having a lot of symptoms that doctors cannot explain despite many x-rays and MRIs. I have a very strong family history of MS (3/5) of one side of my family including my dad) and this is likely to be investigated soon. One of the most extreme problems I am experiencing is nerve pain and fatigue. After I have had a long day (been to an event, lots of walking, etc) the next day I will be fine for a while and then suddenly become incredibly fatigued, to the point where it almost hurts to move/stand and I can barely stay awake. At the same time, my joints become extremely painful in certain locations - knees, ulnar nerve from neck to fingers (plus coldness/numbness here), lower back pain and stiffness, hip pain. The only thing that seems to help is diazepam. This gets to the point where it is debilitating and all I can do is lay down for an hour and wait for it to pass. Is it possible that this could be an MS symptom? I’m thinking more and more that it might be, but also it passes (not completely debilitating anymore) after an hour and I’m generally fine the next day so it couldn’t be a relapse. This has been going on for a few years now but getting worse and MS is so different for each person so I can’t really go just by what my dad has but it is hard to find details on the internet. I’m 31 years old and female. My dad has PPMS, his cousin and her mother had SPMS. Thank you for any information.
It must be almost impossible not to suspect MS when you’ve lived with a parent who has it.
But, as you rightly say, MS is different for everyone. In addition, there are many symptoms that are shared with other diagnoses, so you can’t rely on your problems being caused by MS.
You’ve said you have had many X-rays and MRIs. If you’ve had brain and maybe cervical spine MRId, and no evidence of demyelinating lesions was seen, then it’s less likely that you have MS.
Having family members with MS does make it a bit more likely that you could be diagnosed with it, but the genetic aspect shouldn’t predispose you to thinking you too have it. You are just as likely to have a different autoimmune disorder as MS, although that too isn’t that likely. This is a link to the MS Trust page on the risk of developing MS: https://www.mstrust.org.uk/a-z/risk-developing-ms
Have you seen a neurologist? Or have you been referred by your GP? In fact, what does your GP think is causing your pain and fatigue? Perhaps if you’ve not been referred, you could request such a referral.
In the meantime, if you want information on various MS symptoms, use this website (the About MS tab), or the MS Trust. Much better than googling symptoms.
Best of luck
Thank you so much for replying Sue, I have been in the to doctors about a lot of my symptoms individually but never really talked about adding them all together (partly because I’m scared and partly because I didn’t think they would take me seriously, though I think they will at this point), but I think I am going to soon. They have done another x-ray, this time on my chest, which I will be going in to talk to them about on Thursday. My doctor has said after this, he will probably refer me to an osteopath and try to get a nerve conduction study referral. I think at this point I may tell them what I am worried about and see if they will do a proper investigation for MS as I’m now worrying about it more not knowing than I would getting an answer. I have had an MRI of my cervical spine which they said was absolutely perfect, so that is something at least - would this often show signs of MS?. I have never had one of the brain. I may ask to be referred to a neurologist as I suspect this would be the next step.
Perhaps you should be honest with your doctor about your fears of MS and see whether s/he thinks referral to a neurologist is warranted. It seems odd to refer to an osteopath and simultaneously do a nerve conduction test. The two things seem to come from either end of medical investigations. But your GP will perhaps have good reasons for the tests you’ve been referred for.
A clear cervical spine MRI alone won’t rule MS out. But if there were demyelinating lesions, could make MS more likely.
Regardless of the tests you’ve had, and are to have, it seems that you and your doctor need to identify what area of your body is going wrong. Is it the nerves? Or the muscles? Or joints? Or a combination? There are diagnoses that are notoriously difficult to pin down, because they have symptoms which also appear in other disorders (for example Fibromyalgia). So there could be any number of differing diagnoses that could be considered.
Best of luck.