I last had contact with my Neuro in early September 2012, by this stage I had seem him fairly often, clear MRI, clear LP, borderline normal/abnormal VEP (was concerned about result due to my age, 29 y/o should not be just within normal limits … I scored 117/114/114/144 is the four tests) . He had assumed it was MS due to my symptoms (Lerhmittes sign being predominant etc) - but we left it as: “Post viral inflammation” and that I should come back in 6 months (March / April 2013) …
I last seen my GP in mid November, to get tablets for dizziness and to follow up anything the Neuro had communicated with her - she had shown me his latest letter, in short: “Clear LP, Just within normal limits with VEP. Hopefully post viral imflammation but if symptoms continue, likely diagnosis is MS but I dont have enough proof to diagnose” .
So, not much has changed - I have not had Lerhmittes for a few months now… alot of the abnormal sensations symptoms appear to be easing, I still suffer dizziness, fatigue and spasticty in the legs quite often and my vision blurred for a little while last week (after a few nights of bad sleep!) - but in general, feeling 100 times better than what I did.
… with all that knowledge, is it worthwhile going back in March to see the Neuro? I’m fairly certain if I gave that update, it’ll just be a pat on the back and no further investigations…
Hi, I think if you were scheduled to go back anyway, then yes, it is an appointment you should keep. Everything is not OK again, is it?
You may well be right that the conclusion of the follow-up appointment will: “Still not enough evidence to diagnose”. However, unless you’ve been completely fine, and it’s obviously a one-off thing that has now passed, I think you should still be on the books, and should not be cancelling appointments.
Telling them you no longer require the appointment will be sending completely the wrong message, of: “I’m perfectly fine, thanks anyway”.
They might not do anything if you do go to the appointment, but they certainly won’t if you don’t. Why would they, if you’ve indicated there’s no longer a problem?
If you reject the appointment, and anything else happens, you might find yourself having to be re-referred by your doctor, and right back at the end of the queue, as if starting from scratch. I’m an already diagnosed person, and freely admit to finding most of my neuro appointments a complete waste of time. However, I still go, as at least it keeps me on the radar (if they’ve even got a radar!), and I’ve not dropped out of the system, if anything gets worse. It’s worth keeping the channels of communication open, if you have an unpredictable condition, that hasn’t fully resolved.
Very good advice - I have not made an appointment, he just said come back in 6 months. I’ve always been private, so I dont really have to queue - but the issue would be: spending alot of money for no further information (again) …
Your story sounds similar to mine. Lihermittes, numbness and weakness after a period of bad cold and stress 4 years ago. Everything cleared up after 12 weeks except l’hermittes which went on for another 3. GP said viral inflamation. Then nearly a year later spasticity started to appear after a long walk. This gradually kept getting worse then I went to neuro and had MRI and LP. MRI showed one lesion in neck. LP was clear. Neuro said it was radiation myelopathy (from treatment I had 20 years ago) or transverse mylititis or viral infection. Not MS he thought. Next time a saw different neuro who said radiation myleopathy was unlikely and MS more likely. He repeated MRI and LP. MRI showed the same Lesion and LP was again clear. He could not diagnose me with MS but I have to go back in 6 months.
All sensory stuff has gone including L’hermittes. Only spasticity in right leg left (calf + quad). Physio said sometimes spasticity appears months after damage was done and can be hard to stop. Mine just keeps getting worse so now I have a stiff legged gait all the time. 2 years ago it was only evident if I walked briskly for over an hour. My knee just wont bend enough to enable my toe to clear the ground. How does the spasticity effect you? I have no muscle treamors or jerks in the muscle just stiffness. I am on bacolofen but that doesnt help much.
It does sound very similiar! Yeh - mine started after a bout of cold/flu December 2011 - I just generally figured I had a cold / fu that was dragging on until I first experienced Lhermittes early Feb 2012 - thats when I first went and seen GP.
I had my lhermittes pretty constant until it vanished around October.
My spasticity has been active since Feb 2012 - it peaked in April / May - when my legs were pretty much useless, constantly tight muscles, sore knees - and kept loosing feeling in them (numbness + pins n needles) - much improved since, they still get tired, infact - I generally start the day with tired legs, its the feeling of having done a 23 mile marathon on them…when in reality, I have not moved and was sleeping.
I do get muscle jerks - often enough to notice them, they last a few seconds at a time: can be any muscle, generally, leg, arm,hands however.
My episode did get worse after I had the MRI, which was clear - do lesions still show after a year? Neuro was convinced, that while it did not appear on the MRI - I did have a lesion on the spine which would account for the symptoms.
If the money is an issue, and you’re not covered by insurance, why not arrange to see him on the NHS? Very few private neuros do NOT also work for the NHS.
Alternatively, if you are insured, and not yet diagnosed, but the neuro asked to see you again, shouldn’t it be covered? My insurers were beginning to be a bit irritable with me, after several visits and tests, but still no answers, but not everything is straightforward to diagnose, and sometimes they just have to put up with that. My insurers were pretty clueless anyway: several months after I’d told them I was being investigated for possible MS, I noticed my problem was still recorded on file as a “slipped disc” (the initial suspicion), so that at least partly explains why they can’t have been very happy I was still burning thousands of pounds on “investigations”. They must have suspected either I or my neuro was trying it on, if we’d made no progress with a “slipped disc” in all that time!
So I had to reiterate that the “slipped disc” had just been a tentative diagnosis, and that I was now being investigated for something else entirely.
but yep, I think you hit MY nail on the head there. It is the fact that I have had a number of consultations + tests - and I sensed that they were getting annoyed that I was “burning thousands of pounds on “investigations””.
No, you shouldn’t be feeling bad. As long as it’s clear that the consultant has said he needs to see you again, as part of ongoing investigations, and this is not on your initiative, you should be fine.
Don’t worry, there aren’t many poor insurance companies! Premiums are carefully calculated to cover the few (like us) who have complicated and expensive claims. But many people pay for years, and never claim, or only for something minor.
Neurology is a guessing game so I am sure that insurance companies are aware of that. My spasticity is effecting my gait big time although legs feel far worse and tired in the morning after a full nights sleep too - strange isn’t it. After my initial diagnosis of RM my GP advised me to go into NHS for long term care etc. That is how I got new consultant with new ideas!