I received my neurologist letter from the appointment I had with her the other week. I’ll write it out briefly-
It says that when she previously saw me my history was very suggestive of inflammation within the central nervous system but had unremarkable mri images which were of a poor quality. (Symptoms are listed - tingling and burning sensations, muscle twitched, increased micturition, eye pain) There is nothing in past history, no medication, non-smoker, no alcohol. Grandfather has M.S and a further relative also on father’s side who is in a wheelchair of unknown cause.
Examination showed normal eyes, fundoscopy unremarkable, No evidence of wasting in arms or fasciculations, tone and power normal however very brisk reflexes more marked on left. Increased tone bilaterally more marked on left. Normal power but abnormal sensation with reduced pin prick to mid thigh on left and reduced to shin on right and abnormal temperature sensation. Joint position sense and vibration intact. Reflexes brisk in legs, left plantar upgoing and right mute (I guess this is the abnormal babinski sign?)
History remains highly suggestive of inflammation within central nervous system and four episodes makes multiple sclerosis a very likely diagnosis and an MRI is being repeated but if normal very keen to do a lumbar puncture (Something I really couldn’t put myself through ) Baclofen prescribed to help with stiffness in legs and shaking which is suspected to represent clonus. Blood tests are being carried out and if able to confirm inflammation of central nervous system to be referred to nurse specialist.
I’m guessing that means I’ve still only got the “probable M.S” diagnosis then? Feeling a bit overwhelmed at the fact a lesion has to show up this time. I actually think I’m going to give up with getting a diagnosis if it comes back clear again. There is no way I’m going to consent to a L.P because of my fear of needles. A blood test is traumatic enough (I was shaking in the waiting room.) If it was something else more sinister like a tumor would they have alerted me to this possibility? All I really want is some help with my mobility, a bit of relief from the pain and some help with looking after myself and the children if I need it later on (as well as being entitled to financial help if I’m too unwell to work.) The label isn’t as important to me apart from making my weird symptoms understandable. Can I still get help without the label?
Hiya…I think karen (rizzo) could enlighten you re this letter…
See what the MRi shows…but as I have read on here it is possible to have a clear MRI and still have MS. Seems your last scan wasnt a good quiality re images and on that basis its good you are having another one. I appreciate your fear of needles…but if the next MRI is clear then personally I would opt for it…although with a probable ms dx at this stage your neuro may still wnat the LP. Am sure they could give you something prior to the LP…if you explain to them…?
I know you say a dx is not that important to you…but i think you will find managing and treatment of your symptoms much easier plus othe help and support will be quicker and more accessable if you have one…glad you are being assigned a nurse…and they will be a cruical point of contact as others have mentioned here…they really are the gateway to all that you will need and they can facilitate things for you and although yu will still see your neuro…the nurse will be there as and when you ahve questions etc…
Please dont give up…you owe it to yourself and your children to see this through…whatever the outcome…limbo land is not a great place to be am sure…but sounds like you are not that far off getting the answers you need and the help too…so hang in there…x
I’m in complete agreement with Scoobie. A ‘label’ in itself won’t change how you feel or make the condition go away but what it will do is to open up doors to better medications, treatments and to the proper services & support that you need and deserve.
An LP is not necessary for a diagnosis of ms. It’s an invasive procedure that requires your permission so nobody can force you to have it done. That said it may just be the final piece of the puzzle that’s needed for a definate dx. But then again it may not be. It doesn’t necessarily follow that the LP would come back positive. The actual process of an LP is nowhere near as bad as first thought. It’s not painful, more uncomfortable than anything. But as you have a fear of needles then I don’t think (if it were me) I’d agree to it either. It really would be your call.
From what you’ve described from the letter I agree that it sounds like ‘probable ms’. The next mri may well tip the ‘probable’ to a ‘firm’ diagnosis. You’ll only know that after you’ve had it done. Time will tell.
You said that you you may well give up chasing a dx if the mri comes back clear. Personally I wouldn’t entertain that idea if it were me in your shoes. You’ve come this far and you deserve to know what’s going on. Okay so it can take a while in some instances, but longterm it can only benefit you to know what it is you’re dealing with. Just knowing for sure not only provides more opportunities in terms of meds and stuff but it also means that we’re better equipped to be able to move forward. I know that if it were me then I’d be left constantly wondering…
Limboland is possibly the worst place ever. Nothing quite describes it. You’ve come so far and you will get there, so please don’t give up now.
I completely agree with the others that having a diagnosis makes life so much easier than not having one. It’s still possible to get support without a diagnosis, but it is much much harder.
As far as the LP goes, I guess you deal with that if and when it happens. I’m sure it’s possible to have one under sedation (with pills) so please don’t rule it out.
As far as the letter goes, yes, I also agree that you are still “probable MS”. You clearly satisfy the dissemination in time criterion because you’ve had four episodes. Your clinical exam results are consistent with MS (especially one side being more affected, the very brisk reflexes and the Babinski’s), but I don’t know if they are enough to justify dissemination in space - I think they are all upper motor neuron related (I could be wrong!), so in theory a single well placed lesion could be doing everything. That MRI is making things tricky too - if there is nothing visible on MRI, neuros are urged to proceed very cautiously (or words to that effect). So, overall, probable is the best she can do at the moment unless she really sticks her neck out or gets more information to support a diagnosis of MS.
As far as Babinski’s goes, both of your feet were abnormal. The normal response is for the sole of our foot to move away from the painful stimulus. The only way to do this without moving the foot is to point our toes down, towards the neuro. An upwards response of the toes moves the sole towards the stimulus - not good! It’s also not normal for there to be no response, which is what “mute” means.
Don’t know if you needed this(?!), but here is what the other less common words mean. Fundus is the inside of the eye (yours were fine); fundoscopy is basically using a fundoscope to look inside the eye (a fundoscope is that thing with the bright light on it that they shine in your eye). Fasciculations are little muscle movements under the skin (you didn’t have any in your arms). Tone is the “stiffness” of muscles (your arms were fine, and also normal strength, but your left leg is a bit stiff although still strong). Joint position sense is the easier term for proprioception (a normal person knows where their arms and legs, etc, are when they aren’t looking at them; yours was fine). The rest refer to tests of sensory perception, i.e. could you feel that particular stimulus? (yours were variable).
I hope that you don’t have too long to wait for that MRI, and that it is enough to get you a diagnosis!
Thank you everyone. I have a quick question about my baclofen. Does it take some time to take effect? If anything I’ve noticed a worsening of my symptoms. I only take it at night and I find I suffer from twitches a lot more in my arms, legs and back muscles. It’s not painful but very annoying. Will it subside soon?
I think I noticed a difference about a week to ten days after I started it, but we are all so different, it’s impossible to say how long it will take for you. It also takes a while to find the right dose. Make sure to increase it slowly - don’t be tempted to rush.
I’ve found that a combination of baclofen and pregabalin is best to control my twitches. If you have no luck with the baclofen, then maybe adding something else will do the trick.
Evening all! I’ve been under my doctor for several years now complaining of back pain, over the years my symptoms have gradually got worse. These are my symptoms…pins an needles in my left arm, leg and groin, then it went to my left eye even my nostril! My doctor referred me to the orthopaedic hospital, MRI was performed and it showed the odd disc was bulging and touching the nerve ending on my spine . Some days I struggle to walk and hold things, I only have these symptoms every so often. Last week I went back to the orthopaedic hospital and he said that I was discharged from there and need to see a neurological team following my symptoms. Now I awaite the date. I had a letter today that stated this…
my neurological assessment has been identified as inverted brachioradialis reflexes bilaterally unremarkable??? Can someone tell me more please ??
) Baclofen prescribed to help with stiffness in legs and shaking which is suspected to represent clonus. Blood tests are being carried out and if able to confirm inflammation of central nervous system to be referred to nurse specialist.