I'm waiting on a neuro appointment too. In my case I suspect it is passing the buck. GP says speak to podiatrist. podiatrist and rheumy say neuro. but I think neuro is just going to pass me back to one of the others.
I too am having difficulty telling one pain apart. If I ignore something I worry it might be something I should have mentioned yet they all make me feel an idiot with the things I do mention. catch 22.
Yes, my Neurologist has been influencial in my treatment. Although, my disease is very active and the meds have had little impact. However, the medical world is always moving on, and we can live in hope that one day we will be saved from this horrible illness.
Re: Rheumatologists:- they deal mainly with immune-mediated disorders of the musculoskeletal system. How the ilness and medication affects your bones and muscle tissue etc. They all should work in conjunction with your other Consultants to find the best treatment for you, everyone reacts differently.
Yes, it is so important for them to work as a team. The specialists in each area know how the disease affects that part of the body and the best way to control symptoms.
At this point, I think, like you, my neurologist is the main one making decisions, though he is good about sending notes to my rheumatologist. As you said, every case is different.
I hope they can find a treatment that works for you. Can I ask what is affected neurologically in you?
Hello KayHimm, how are you? Do you feel that your own treatment is helping?
Re: Neurological symptoms that I suffer. My legs have a lot of nerve damage, my muscles are very weak, making the bed leaves you exhausted and running with sweat and feeling like you skin in 10000 degrees. Unable to lift certain objects as you cannot grip or take the weight.
Emotionally you feel like your life has been stolen from you. All the plans that you had in place seem out of reach.
Some days you feel "what's the point of this life". Then the next day you are so happy to wake up and face another day.
It also affects your demenia when you see how it impacts on your near and dearest and close family. It does take its toll, but everyone is praying for the day when you "get your life back".
Life is worth fighting for... 😃 👍 So we must battle on and not let this disease win.
Not true if your autoimmune disease is effecting your nervous system as MS, lupus and APS often do. Many with autoimmune diagnosis see teams of doctors often including urologists, dermatologist, cardiologists and neurologists. My lupus and APS have effected my kidneys, heart and my brain so I see doctors other than my rheumatologist more often than not.
Not sure if you have been to Neurology before but they will test your reflexes and look at your coordination. They might look at your ability to heel-toe walk, touch your finger to your nose, etc. They’ll also look at sensation and might use a tuning fork to do this to see if you can feel vibration, etc. They also might look at your vision- dilation of pupils and ability to detect colours, etc. I think they will find your list of symptoms very useful My neurologist isn’t great but I think I bombarded her with information on the last visit so she didn’t know what to focus on! So start with your main issues and feel free to ask what they think might be causing them!
Oh I know that feeling! But don’t let anyone make you feel that way!
The neurologist said I possibly had myelitis as my reflexes are very odd. But it hasn’t shown up on an MRI (although apparently it doesn’t always show up 🤔). She had also mentioned functional neurological disorder but I know it’s not that and I told her that. The rheumatologist thinks I have had some kind of autoimmune response but he doesn’t know why or what it is. I had a steroid injection last week and it’s helped with the sensation in my legs and feet...so that would suggest I’ve had some kind of inflammation? I think!
Lisa — The « mental » label needs to head for the trash can immediately. You have had an abnormal neurological exam, autoimmune antibodies consistent with your neurological symptoms and Dr d Cruz has told you you have UCTD and possible with features of dermatomyositis.
Try this approach. When I was young and knew nothing I asked my rheumatologist at first consultation if he thought this was « all in my head. » Surprisingly, je said no and told me I was presenting with signs of autoimmunity but that sometimes it continues to get better as mine seemed to be doing. I was so relieved. And thought maybe it would disappear altogether. So just ask the neurologist if he thinks you are « crazy » or « mental » or whatever! I think you will be pleasantly surprised how often he gets this question and how he can reassure you.
You are going to be the most prepared, interesting and funny patient this guy will see all month!
Lisa — your list is perfect. They need to hear things in your own words but succinctly. I think in your case the neurologist knows what he is looking for. Dr d Cruz may give him a note with reasons for his referral. He may mention your positive myositis antibody, particular rash and neurological exam result. You may want to elaborate on which of your symptoms go come on together.
Take comfort that this neurologist is affiliated with a specialist rheumatology center. He knows a lot about autoimmune diseases! Many affect the brain and peripheral nervous system. You are in expert hands.
If he asks why you are there, maybe just say they noticed something on my neurological exam and told me I need to see you and to get an MRI.
Lisa I would write everything down. Take some time to do it and think of everything that is unexplained and concerning to you. I tend to feel like I’m rambling on and it is hard for a visit to go well without a clear understanding of the issues.
My uncle, who is a Doctor, told me a long time ago that they work for us, not the other way around. They are paid and have chosen to work in a field to help others. They can’t solve everything but they should listen and do all they can. With that in mind, understand that the neurologist went to school and chose a field to help diagnose and treat just these types of issues so you do your part by presenting things clearly and confidently and let her/ him do their part.
You have some very strange things happening and you need answers and direction. I pray you get both!
Well-said! That is the doctor’s job to get the information they need to help us. Helping us is the goal!
My experience with neurologists is “the weirder the symptom, the better.” When I saw one after a concussion I happened to say, “Oh, that is nothing, just one of my weird things,” he responded, “No, I want to know all the weird things!” In about a minute he figured out most of my symptoms were related to migraine.
Yes!! I have learned that most unexplained weird things that we all get used to are explainable by someone. We just have to find the right someone to do it! Plus I think we tend to feel foolish because of most of our journeys through these visits.
I was told my hearing loss was not due to Lupus - “ it’s NEVER Lupus” my wise former Rheumatologist said as she laughed and walked out the door. Guess what - that’s why we push and advocate for ourselves!
Hopefully this appointment will help you get answers and move forward
I think the list like you've done here should be helpful at the appointment. I guess they know if you've got Lupus / suspected Lupus, so they should be considering neuropsychiatric SLE ( NPSLE) symptoms .... mention things like any brain fog, lack in concentration etc as that may be useful to them / link to Lupus and the brain effects, especially if you're more likely to get those if in flare up, after sun exposure, rather than it's "fatigue brain fog"
It can be difficult as I understand to not want the "mental health label" and not want them to dismiss you, but I do think it's important to mention general mental health issues eg do you get depression, do you ever get "psychotic" symptoms such as the type of things that could be classed under "hypomania" or "bipolar manic things", including episodes of insomnia, as they can be linked to NPSLE / Lupus affects on brain
Please try not to worry the drs are there for you, and to help try get you the best possible treatment
I have the worse case of insomnia which is worse when other symptoms are in force.
I explain some of my behaviour as bipolar. Only recently was discussing this. Episodes of buying things I don’t need then sending them straight back .
Depression this is the hardest one of all. I go from being so upbeat and then I get floaded with the fatigue and brain fog and find myself fighting suicidal thoughts 😔. I can’t keep up, with the ups and downs .
I take anti depressants and it still comes and goes.
I would never have thought this would have been the field of a neurologist.
Please mention your suicidal thoughts to your antidepressant prescribing doctor. It might be a side effect of the specific medicine you are presently on and a change in script might help with this. Suicidal thoughts are a urgent health concern it should be addressed before September's appointment please contact the doctor who prescribed your antidepressant ASAP. Xo
When they do come is there someone you can talk to during the thoughts, a family member or good friend? To me suicidal ideation is more life threatening than cancers or heart disease. I have lost more people to suicide than all other diseases combined in my age cohort circle of friends and family. Xoxo
I know I would never do it because I focus on my children.
During my times of what feels like desperation I put my ear plugs in and put some meditation on. It really helps distract my mind .
I did use to ring my mum but she never understood it. Infact at the end of the call I wouldn’t hear from her for approx 4 days. Then I’d get the random, do you feel better now? 😔
Through my times of struggles I have learnt to be a more caring mother
I guess for that reason the struggle is worth it 😐x
I am so sorry you mother does not respond healthily to your illness. She was most likely avoiding you afterwards out of fear, guilt and her own issues or denial but boy oh boy as a mother myself I work really heard to put my judgement, issues and fears to the side when a child reaches out for our help.
I openly talk about mental health struggles with my 12 year old. I want her to never feel as alone as I did when I was younger and in a depression or drowning in anxiety. I thought I was the only one who could not snap out of a funk until I was much older. I also talk about addiction often for my husband's and my family is riddled with family members suffering from it. I have a history of anorexia, which was my control issue rather than alcohol or drugs, so we talk a lot about self image too.
I am so hopeful that societal changes in understanding and acceptance of the importance of mental health will enable our children to avoid many of the side effects of avoiding mental wellness has caused our generations. It is now on trend to practice mindfulness and to treat our psyche as well as we should treat our bodies. I truly believe the two are bidirectional.
My brother has severe mental health. I think as soon as I reached out for help to my mum she thought perhaps I sounded just like my brother and she couldn’t deal with him let alone me.
The sad truth is my little boy was a baby when I started getting really unwell and I needed my mum if not to look after me but to look after my son. A cry for help fell at deaths ears
It sounds you share a lot with Lisalou and SRiley. Am I correct that you have neuropathy and myositis? The neurological stuff is so hard. The fatigue is made even worse with muscle weakness, right?
I am doing okay, thanks. I have what they call “low level CNS involvement” and autonomic neuropathy. My issue is not pain but auto-regulation. I march in place when I buy cereal at the grocery store!
You have a good and realistic approach. There are many losses but too much to live for to give up.
I think your doctors are definitely thinking outside the box with you and ruling out everything. Your neurology appointment is critical, I think. They may not want to treat you without a muscle biopsy. So hard, I know, but they have to get it right. Just a few more weeks. Remember neurologists are also experts in myositis.
You have done great so far! We will get you through until September 2.
I have two neurologists one prestroke due to migraines, meineres and carpel tunnel and a new one at a stroke center. I adore my neurologists , my stroke neurologist actually was the one who tested for APS not my rheumatologist, but as to offering treatment meds for things other than, migraines, ms, carpal tunnel or nerve entrapment and possibly tumors they have very little treatment options to offer to elevate the symptoms you mention above.
Things like ssri's and anti seizure meds for migraine and overall odd feelings and after my nerve conduction test a brace for my arm and leg were the only options offered. If you are at a high risk for a stroke maybe aspirin or plavix will be prescribed. I just want you to have realistic expectations. Neurological symptoms are not only hard to find the cause they are really hard to treat.
My neurologists, both are at Yale university, send a list of symptoms to check prior to my appointment so they already know our symptoms and then they do the neurological exam, walking heal to toe, closed eyes touch nose, lift eyebrows and smile, count backwards from 100 and subtract 7 sort of stuff. The symptoms check list asks about headaches, swallowing, vertigo, double vision and numbness more than tingling, movement difficulties, confusion and memory loss.
I get NPSLE symptoms, my worst symptom is hypomania and the first sign I'm in hypomanic episode is that I get insomnia. I've also episodes of depression on my medical record too.... All my mental health issues are post Lupus diagnosis, but drs didn't always make the connection.
My depression has always been "mild" and I always thought linked to a definite reason eg coping with diagnosis, learning my "Lupus limitations", having to give up a career I loved... However the depression plus hypomania made many drs think I was bipolar / "affective disorder". It's only been in the latter years that my drs and any psychiatric professionals have thought it's actually NPSLE ( they now count the hypomania as "NPSLE psychosis" and they now don't think my depression was a "bipolar symptom" but rather a "reaction"/ grief like process after diagnosis ( I rarely get depressed and it's not a deep depression the way a lot of people get, I can "snap myself out" of depression, hence I'm not personally sure about the depression side I tend to agree with my drs current thinking)
The hypomania which I can still get, combined with brain fog ( which I get a lot) was enough to put me in the "NPSLE" category .... I've never had scans etc, or been told it's "full on" CNS Lupus as I think on the "scale of things", I'm "fairly mild" and my mental health these days tends to stay fairly stable, ( it will worsen if I flare up and can worsen if I'm not very sun sensible. I know it's most definitely linked to my Lupus)
I take a mood stabilizer (low dose Quetiapine) which works really well for me to keep me stable
The definition of NPSLE is a bit "vague" as even medical professionals found it hard to decide what symptoms it includes.
This link has some useful info, and will give you an Idea of the symptoms / syndromes that ARC tried classify as NPSLE.
I think some neurological symptoms could be counted as part of NPSLE
I personally don't have the positive "Lupus anticoagulant" / APS but if you have that it's thought to be possible that brain involvement may more common in APS so if they've not checked that perhaps someone should do so
Hope you get answers soon.
Please don't ever be afraid to speak up about your mental health .... good mental health and care for it, is just as important as any physical health
I struggle deeply with the ups and downs with my mental health. One day I feel well physically and mentally and then boom I find myself in a desperate depressive state.
I am fully aware of myself and have always felt that my illness changes some sort of balance in my brain.
I experience a burst of energy with spontaneous spending, before fatigued sets in then the skin rashes follow.
I’m off to the gp today to see if I can get anything to stabilise my moods, because this rollercoaster is just too much to keep up with . Also will ask to do some routine bloods to check vitamin D levels etc.
Your symptoms seem not that dissimilar to mine in part bar the rashes.
I am in the neuro system. Started in April 2019. I’ve had brain mri, pet ct scan, spine mri. I’ve been diagnosed with mild peripheral neuropathy. In addition I’ve been diagnosed with transverse myelitis which is a rare condition. This was picked up by spine mri. I’ve had loads of blood tests to check for deficiencies and to see if due to my lupus. I’ve been lucky that rheumatologist and neurologist saw me in a special joint clinic.
I have a lumbar puncture tomorrow.
My legs are like blocks of ice and I keep falling over. Plus I have numbness in my feet.
I hope they get to the bottom of things for you. I’ve learnt to be patient and tolerant.
I used to think I was the only one to go to a neurologist on this forum, the majority go to rheumatology.
I’ve been seeing my neurologist for 2 years now, he was the one who diagnosed me with Lupus and Rheumatoid Arthritis. I have regular blood tests and appointments. Also after a full spinal MRI he has referred me to a back specialist.
I hope Lisa you get some answers at your next appointment.
Lots of good advice here.
It’s hard to appear happy when your going through so much.
I am at present using the Sleepio App to help with the sleeping.
Hi Lisalou. I think what you have written here is what you take on your list of questions to the neurologist appt. Never be afraid to ask many questions. It's a 2 way appt. I so hope you get some helpful answers and hopefully some treatment.
These neurological symptoms can be scary, right? There are many episodes when I felt strange but passed it off as my « stuff. ». The neurologist does thing I have had some « hits. » Now I know to call 911. It is important to share our stories and help each other.
My neurologist diagnosed likely Proximal Myopathy and mentioned testing for MG if it seemed necessary in time to come. He was really nice but I haven’t had any follow up since and I’m not sure there’s anything he could do for me xx
When I recently went to a neurologist at the Cleveland Clinic in July this year, I took a list of all my symptoms and let her sort it out. I knew some of my symptoms could be from the Autonomic Nervous System. I took a copy of my brain mri and the report. There is no indication of MS.
I have many of the symptoms you have. She diagnosed me with Functional Neurological Disorder. She couldn’t say for sure if it is Lupus related.
My main symptoms are: tremors in hands, pins, needles and numbness in legs, arms, feet, face (one sided sometimes), vibrations in my legs like I’m plugged in to something, burning , muscle twitches and the feeling that my body is stuck in the fight or flight mode.
She’s treating me with Gabapentin, but it has caused my vision to get blurry and my legs swell from the knees down. She wanted me to gradually increase to 900 mg a day, but I am only taking 300 mg at night. I’m waiting for a call from the Clinic about the situation. I also take Zoloft which has made me a bit more calm.
Best wishes to you and tell the doctor everything.
Finn, not sure how you feel about CBT or if you tried it already but it has done wonders for my post stroke centralized pain which is similar to functional neurological disorder because my brain, post stroke, needed to reroute due to dead areas and this caused certain areas responsible for interputing pain to go into overdrive. It is also linked to excited glia cells, i.e. Brain inflammation. Gabapentin helps to dampen down these issues but so do meditation, mindfulness, hypnosis and CBT. I have been able to avoid gabapentin for now by adding CBT to my regime. Good luck.
You are not there to perform for the doctor. He is there to help you. Maybe turn it around and imagine how good it would feel to reassure an anxious person ( who is not anxious at a first neurology visit?!) and then maybe make a tough diagnosis, particularly one that can move a person forward? Dr d Cruz is entrusting him with your care. That is also a privilege.
Who wanted to help a patient like you?!! You have struggled so long and have a challenging and complex illness. Hey, at least in private neurology practices in the US, most of what neurologists see is headaches and « functional neurological disorder » which TT and I hate. So think of yourself as an « exotic » patient. 🐲🦄🦜
Dear Lisalou, how can I mend your brokenness, how can I stop this rain from falling down, stop the world from spinning. You are a remarkable person, I am with the hubby's here, try to see a neurologist, they are the gate keepers so to speak. They are the ones who look past all the darkness, and do come up with some conclusions, will also give your other Dr's a run a bit. I have seen one for years, when all others gave up on me, and he came to some very surprising and fair answers, that spun the heads of the other doctors. I had lyme disease, and nero nerve dysfunction, which was the cause of the maze of symptoms I presented with to other Doctors. If it wasn't for him, I would still be in the maze of "we don't know". For that I was thankful. I pray you will find comfort, relief, and answers soon. peace, blessings thestorm
My daughter has been recently diagnosed with NMO and this is also an autoimmune disorder , she is now with neuro although she also has SLE and IPLS, nephritis, RA and many others . If anyone else has been diagnosed with NMO I would grateful to hear from them as this is another setback . She sees a rheumatology and an immunologist and went blind 5 years ago in left eye so I suspect this NMO diagnosis should have been then as MRI scan showed multiple lesions .
Hi Lisalou. Sorry to hear you're having such a bad time just now. Have you ever been prescribed an SSRI to help ease your depression? Just a thought. I've taken one (Venlafaxine) for more than 10 years and I do find it helpful. Hope all goes well with the neurologist.
I agree, 100%. But, if SSRIs help then, so I've been told, you have a 'physical' problem, ie an insufficient amount of serotonin (the 'happiness' hormone) which the drug is able to help correct. Take care. xxx
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My neurologist isn’t great but I think I bombarded her with information on the last visit so she didn’t know what to focus on! So start with your main issues and feel free to ask what they think might be causing them!
UCTD/Lupus Muscle Weakness and Bone Pain
Could I have been misdiagnosed with Rosacea?
crazy symptoms and no diagnosis
Hi I’m a Man aged 55 advice please 
