Thank you all for the tireless work you put into the community, we truly appreaciate it. This question is for Gareth or anyone else with the knowlege.
Im a 38 yr old male who is 7 years post miller fisher diagnosis. Recovery went well, was back working and surfing within 12 months, however, have had ongoing issues with fatigue since. I have struggled to find the balance of exercising, without over doing it, as when i do, i fall into a bit of a heap and it takes some time to get back to normal levels.
In the past 9 months however i have had more residuals symptoms pop up which have been very consistent. Symptoms like random weakness in limbs that come and go, random neuropathy that comes and goes, aching sensation in the back of legs that comes and goes, and extreme faitgue quite often. This has started to effect my daily life so i sought out a neurologist to check what was going on.
I was sent for bloods, MRI, and we did a nerve conduction study. To my surpirse, everything came back fine, to the point that the neurologist was surpised how well my nerves had recovered after MFS. He ruled out MS, CIDP, mysthea gravis, and any other neurological condition. Obsiouly this is fantastic news, however, im left stumped as to whats going on.
My question is 2 pronged, firstly, is it normal to see these residual symptoms appear without any nerve damage being picked up in testing? I have read quite a few of Dr Parrys research papers and from my understanding, residuals stem from the nerves that have been damaged. And secondly, do you think i should see a second neurologist to get a second opinon?
Thanks in advance for your response, its greatly appreciated.
Hi Christian: This is very difficult to answer as your nerves have been given a clean bill of health by the neurologist whom you saw and it seems that he has been very thorough. Long-lasting residual fatigue is common after the usual forms of GBS but uncommon after Miller Fisher unless there was some limb weakness as well. It is important to make sure that your doctors have checked for other potential causes of fatigue like low thyroid function, anemia or a sleep disorder. The other fluctuating symptoms are sufficiently nonspecific that I have difficulty coming up with an explanation. I am generally very supportive of getting a 2nd opinion in obscure cases like yours but I am not optimistic that there is going to be a satisfacgtory anwer for you. I will forward your questions to Suzie Mudge who has just compelted a study on fatigue after GBS and she will have some good advice on how to manage that symptom. Sorry to be of so little help. On a related note, it would be great if you were willing to participate in our ongoing research study. If you are will to do that you should contact Dr Eileen McManus at firstname.lastname@example.org
I can give you some generic advice for managing fatigue, however I’m afraid I can’t provide any commentary about the extreme fatigue you have been experiencing recently, which if I understand correctly is over and above the fatigue that you have been dealing with since your Miller Fisher diagnosis.
The study that Gareth is referring to that we have just completed showed that activity helps reduce fatigue in GBS, Importantly though, progressions should be made slowly and carefully so as not to worsen fatigue. A lot of the participants in our study used FITT principles to plan and progress exercise where:
I = intensity
T = time
T = type
The key thing is to only progress one of these features at a time to avoid too much overload.
It is really important to try and avoid a ‘boom-bust’ cycle where you do so much activity that you crash for a period of time afterwards. If you feel like you’re experiencing this pattern, then it is worth trying to ease back on the amount of activity that precipitates the bout of excessive fatigue.
As I said before, these are fairly generic principles and they all may be known to you already. Seeing an occupational therapist or physiotherapist who work in neurological rehabilitation might be helpful to look at the specific features of your fatigue to see if they can offer more individualised advice.