Another Dead End

Appointment today with my neuro. Confronted him with muscle atrophy/wasting in my hands, more predominant on right side, including leg. This is not part of FND, I stated. What is causing this? He doesn't know. Also abnormal test results documenting double vision, other symptoms, etc. He said he couldn't pull together the test results to give another name to what I have. He is very supportive, kind and patient, not dismissive, yet it seems he is not looking further. This catch-all diagnosis seems to leave us hanging. He has nothing to offer as far as treatments. He did say that 10 % of the patients were helped with CBT. I tried that and the therapist told me I didn't have psychological issues causing the symptoms. CBT didn't change anything. We discussed MRI with finding that when I put the exact sentences written on the MRI report, that even stated 'could be indicative of MS"on-line were definitive of MS. He dismissed them, saying the radiologists have to err on the safe side?. The white patches were from aging. Are the drs afraid, after years of being ill and searching for a diagnosis, not going to change their opinions? He said he wished he could say I had MS, then he could treat me? I am confused, discouraged and know there is something else going on in my body. I walked out of his office in tears. I am considering an appointment with an endochrinologist to explore mitichrondrial dysfunction.

Feeling very low tonight.


21 Replies

  • Hi Tewa,

    Sorry your visit was so disheartening. Muscle atrophy is usually a symptom of lower motor neurone damage, as opposed to upper, that causes spasticity, like I have.

    Neither are 'functional' symptoms but documented, accepted neurological signs : no sh*t, Sherlock, Mr Neurologist, so why aren't you looking into it for us ? ! ! Is this your first scan, Tewa and did they use a contrast dye ( helps to show active lesions in MS ) ? Sometimes they feel unable to make much of white spots, especially if there is no original scan with significantly fewer spots to compare to . Have you had an EEG , EMG/nerve conduction test ? ( I asked about an EMG but was ignored ). Is there a relapsing, remitting pattern to your symptoms, have you identified a regular pattern ( times apart between symptoms/times per year ) or triggers ( such as infections ) ? Are there any signs of an immune response during a flare up - elevated white cell count/raised lymph nodes, that can't be accounted for by a concurrent identified infection ?

    Docs appear to be very guarded, when it comes to an MS diagnosis, in some ways it can be a diagnosis of exclusion, if nothing obvious appears on scans : in some people I have read about on forums it has taken years. Bottom line seems to be that scan is not showing anything definite at present ( which could actually be a good thing - if it should turn out that you do have something progressive then you do not have much damage thus far ).It is darned hard, knowing there is something wrong but not being able to get any confirmation of what or why. Since MS has not yet been ruled out, I would suggest the watch and wait method, keeping a diary of symptoms where applicable.

    Take care,

    Angela x

  • Angela,

    Thank you for your response. I have had three EMG/Nerve Conduction Tests, MRI's, CT scan, Visual Evoked Potentials and additional testing for the diplopia (double vision.) Barium Swallow Test for swallowing /choking issues...etc. All were abnormal. I will write the results of the last MRI, without contrast, as I am allergic to the contrast dye.

    A few scattered nonspecific foci of increased T2 signal in the sub-cortical and deep white matter. One of these, in the left frontal lobe is located perpendicular to the left lateral ventricle. Overall, these are non-specific and most commonly secondary to small ischemic disease, although Multiple Sclerosis could have this appearance.

    My neurologist told me I do not have MS, it is ruled out. He has diagnosed me with Mylagic Encephlomyelitis and FND. The other abnormal test results were: according my my neurologist, not enough to put it all together to give a diagnosis other than the ME and FND. My neuro-ophthalmologist put in his report; documentation of double vision, cranial nerve IV deviation, esodeviation, Schimmers (dry eye) inferior/superior arcuate defect/changes, and other issues. He recommended a Brain Stem Evoked Potential, which my neuro is not going to order.

    I have had a pattern of flare-ups for this entire 6 1/2 years. I have shared this with my drs. Have sensory overload and cannot go out very much. Hot weather or extremes in temperature, barometric pressure exacerbates this. ..and using my muscles.

    I have muscle atrophy, nerve damage and this is progressive. I went form a cane, to a walker and now a power chair. Getting tired now and have to stop writing.

  • Tewa, thanks for pushing on through fatigue to get all this info to me. I am genuinely gobsmacked ! It seems so clear that something is going on here, yet neuro has dropped your case, without the test neuro-opthamologist recommended, no suggested referral or plan for you : (

    I suffer from heat exacerbation too - although it is well documented in MS, I also know people with brain injury from other sources who get this, so can be common in many brain dysfunction conditions. Basically, heat can slow signals.

    I so hope you can explore/rule out or in , other possibilities and ultimately find ways to improve your quality of life.

    All best wishes,

    Angela x

  • The only offering from my neuro, (besides telling me he is sure I don't have MS, and sure I do have ME/FND), is to continue prescribing the Mestinon. I was started on Mestinon abut two years ago when I was diagnosed with Myasthenia Gravis. My present neuro did a Single Fiber EMG. It did not show MG. I am feeling a bit like he has dropped me. He certainly isn't going to pursue other avenues. I just don't get it.

    I hope my PCP gives me the referral to an endo. See how that plays out. If no success there, I suppose I am going to have to make piece with present diagnosis and focus on not pursuing ? I do everything I can to help myself, Neuro stated that well as saying he is so sorry that there are no tx's and he is frustrated as well. I suppose he is in a bind too. He is a very kind, and supportive dr. I have been ever so grateful for that.

    Thank you Angela. Best to you as well.


  • I'm so sorry you are battling with doctor hopelessness. I haven't been labelled with FND but I have had two neuros who have both been equally shruggy and useless, once my results yield little. I'm under rheumatology too having been diagnosed with RA five years ago. The last rheum was equally useless so I'm moving on now having changed locations recently.

    I don't normally come here but your post caught my eye. Re mitochondrial disorder and seeing an endocrinologist - if you choose the right one this may be your way forward. I saw one privately recently having drawn a blank with my rheumatologist and new neurologist. He looked at my hypothyroid blood results and introduced a new thyroid med, T3 (Lyrothyronine). I also started taking methyl B12 tablets. Not sure which but one or both of these have helped me enormously. The endo doctor said that in his opinion doctors are too ready to blame their patients (ie label as psychosomatic) with what they don't understand themselves. Then, one day, a scientific breakthrough occurs and lo and behold IBS becomes IBD or whatever. My new GP said that, in her experience, neurologists are very good at labelling things they don't understand as functional/ psychological. It's absolutely unacceptable that the patient is somehow blamed for the failings of the medical profession. If you have all the symptoms of MS, as you clearly do, then why don't they just treat it as they would MS and see if this helps? What on earth is to lose for them or for you?

    The endo also told me that, earlier the same morning I saw him, a patient had come in with some condition that is so rare that he's never seen it himself before - and he's past retirement age and very experienced. He was able to diagnose her then and there as it was so obvious to him. Later on I was speaking to my friend who has Addison's Disease and she said that when she was diagnosed, as a young woman about 25 years ago, she had been previously told she had ME and dismissed by several doctors. The endo who finally diagnosed her told her that she was about ten days away from dying of total adrenal failure.

    Hang in there please and try and find the right doctor for you.

  • Ps many doctors don't know about this but this link explaining neurological Sjogren's Syndrome may help you or others here:

  • Thanks for your response. I have called my PCP and left a message for a referral to an endochrinologist. Thanks for the suggestion. I know my neuro wishes he could offer more, but he can't and we don't even have another appt scheduled. I am not going to stop my pursuit of exploration for some treatments. Friend of mine shared with me one of her grandson's developed MS-like symptoms. Neuro messed around and then finally did some tests. Tests did not confirm MS, neuo had nothing else to offer. GP sent him to an endo, who tested and he has Addsion's Disease, which can be fatal and his parents hope it has not progressed too far, as he has been ill for about 4 months. I had Adrenal insufficiency in the past and have wondered about mitchrondial disorders and related adrenal disorders. It just seems as if my symptoms are more MS-like, neurological. I was actually diagnosed with MS in 2010 by first neurologist, who changed his mind after three months, saying he didn't know what it was. Then ??, with inferences of psychological, which did was disputed by a therapist, psychologist and a psychiatrist. Then a diagnoses of Myasthenia Graivs, , now MR and FND.

    MS IVIG drugs very expensive and without a firm diagnosis, drs cannot order the treatments.

    I am hopeful that may be the endo will be of help. Will follow up and share after I get the appointment.

  • I will look out for your post about the endocrinologist. If you are based in the States then the link I posted about neurological Sjogren's might be extra relevant - not sure if you looked at it or it has already been ruled out? Dr Julian Birnbaum works at the John Hopkins centre and wrote this piece about how often neuro Sjogrens gets misdiagnosed as MS. If you don't have peripheral neuropathy then just scroll further down until he gets onto central nervous system features. Best of luck in tracking down your symptoms. Twitchy

  • Thank you Twitchy. Neuro at Hopkins in 20013 said Peripheral neuropathy and maybe something else. No neuro since then has given me that diagnosis. And no one has discussed Sjorens's. I am befuddled. How can my right side be affected more than my left with increased stiffness,even in my right eyelids, atrophy, muscle spasms, crawly, cold sensations, right arm hangs lower from the shoulder, increased foot drop, hand cold...? I am not a neuro, but this just doesn't add up to ME and FND. I ask myself, should I just make piece with at least having the ME/FND diagnosis? I can't seem to, as this continues to progress with increased pain and symptoms, and NO TREATMENTS. Not willing though to go to a new neuro, with the chance of being dismissed with similar results. Maybe back to neuro at Hopkins? I don't know what to do. This is such a conundrum and has been since 2009 when I became ill. These appointments leave me in a confused, distressed quandary. My body is telling me, with the specific symptoms and pattern, that there is something else, and it can be treated. I am a trained holistic practitioner; Medical Massage Therapist, Reiki Master, Certified Reflexologist. The training teaches us to pay attention to the body's messages. The holistic therapies I have done have been helpful at times, have not resolved this. The practitioners have told me I have MS. I am using Doeterra's Nerve Blend remedy for MS. Some relief at times, short term and not always. So much damage has happened with nerve endings.

    I will check out Dr Birnbaum's piece. I am in the states, in Virginia.

    Thank you.


  • I'm not saying that your problems could be neuro Sjogrens but you are fortunate enough to be relatively close (as opposed to Scotland where I am!) to the world expert on this neuro Sjogrens so you should try to see him if you possibly can.

    I too have many signs of MS too and yet not specific enough to meet the criteria. Mine takes the form of a very widespread and slowly progressing small fibre neuropathy and disequillibrium. There seems to be no hope of further diagnosis and treatment for me either, but unlike you I have no John Hopkins or Mayo remotely within reach. I have paired oligloclonal bands in my spinal fluid and raised inflammation markers in my blood so they can't dismiss all as psychological or Fibro or whatever as I don't meet criteria for these either thankfully. I have learned the hard way (massively drug intolerant/ allergic) to trust my instincts over the medical knowledge of doctors.

    The NHS here is far too stretched and private options terribly limited - and I have no health insurance because it's not how things are done here unless fabulously well off or working for a company that includes free cover.

    You need to find the experts in rare forms of neuro conditions such as MS - and also learn more about whether your symptoms are immune mediated or not. There are many useful threads about this on the NeuroTalk website. Don't despair and don't let them fob you off with a diagnosis of FND or ME if these are stopping you from making progress or getting better, as you obviously feel they are. Best of luck.

  • Thank you. I will consider your suggestions. I am a bit gun-shy at this point about seeking another opinion as Tuesday appt has triggered the experiences of past drs who were so dismissive. Now, could I possible have medical appt induced PTSD? HA!. I still have my sense of humor.

    I am also drug intolerant..which was seen as a sure psychological marker. The evaluations I had, that I arranged to explore that possibility, as I wanted to leave no stone unturned, did not reveal any psychological issue for causation of this illness..I have had to fight to be heard about no contrast with MRI's. Good that a dr included that in my notes, still have to state it each time.

    I hear that you also, have been through it. Sorry you are not closer to Mayo or Hopkins. Sounds like you have struggled as well. How do you manage, and without heath insurance?

    Best to you in your pursuit of answers and help.

  • Ah well when I say drug intolerent I mean to the extent of having anaphylaxis to two RA meds, pancreatitis (hospitalised four times last year) to another. So anyone who tries to tell me that my problems are psychosomatic gets it right in the neck from me!! And having moved to the Scottish mainland recently several doctors have tried this tack or have behaved unprofessionally. And they have then suffered formal complaints about them from me - a GP and a surgeon so far and I'm farely sure that they've had knuckles wrapped hard as a consequence. I want to ensure that they buck up their attitudes to others.

    I think you are too kind in saying that your neuro has tried his hardest and that you are grateful to him for being sympathetic.I know you feel that the priority has to go to those with clear cut diagnoses - I've had this feeling myself and been told I'm lucky not to have MS or active RA by my present neuro. But how is it lucky to have to dedicate so much of our lives to battling to have our awful symptoms acknowledged and treated?

    I know how it is to be dismissed and feel you are wasting these doctor's precious time. But remember they are handsomely remunerated and should be working hard to get to the bottom of your disabling problems. To be honest I don't know how they can live with themselves by doing anything less than promising to keep searching for you?

    Please take a few days to regather and then start again as many of us have also had to do. You know you aren't alone in what you are experiencing. It's awful but at the end of the day you know you are right to keep fighting for your life/ health X

  • Good for you to have stood fast with the drs and made formal complaints. I have started doing that as well.

    I think I was so hopeful with present neuro with his respectful and kind manner, since some past experiences have been so awful with one doc wanting to ship me off to a psych unit to be "treated." This was in the west, where the doc are so lacking in knowledge, that every patient who they can't easily diagnose is labeled as having a conversion disorder. My documents from MH professionals had no bearing whatsoever. Seems like present neuro has passed me off with a 'nicer' presentation. I am disappointed in him. Confused too.

    Oh yes, lucky! Lucky to have a disease that impacts so serverly, leaves one open to medical abuse...and then no treatments! It takes a very strong individual to handle this.

    Do appreciate your suggestions and support. I do need to step away from this for a few days.


  • Yes step away for a break - but in the knowledge that internet support communities, accessing Information and the latest research, help us to stand together firm and inform ourselves about medicine and science that previously only doctors had access to. This empowers us to see past doctors who offer us no hope and search for doctors who are prepared to keep researching and investigating until they find out what is happening to us.

    We know what we are experiencing is real and so, fundamentally do they. They use terms like Functional and diagnose patients with their non diagnoses such as Fibro, IBS and ME, in order to blame us for their own professional failure. They know and we know that only a very few people in a huge global population would be mentally ill enough to make this stuff up! X

  • Thank you. It is so helpful to have connection with those who understand and give such support. I live alone, yet these connections do help so much. Before getting info about sites such as this one, I felt completely alienated.

    I am grateful.


  • You are most welcome! X

  • Muscle atrophy ( hands, feet, lower arms and legs ) is also a symptom of CMT. I think there are many sub types of CMT. Some with nerve conduction tests within normal limits and some with poor reflexes. It might be worth having a look at CMT. It is the commonest neurological disorder but few doctors recognise the symptoms.

  • CMT was a consideration early on, but once the first neuro decided I didn't have MS, after giving me a firm diagnoses, then no one else has pursued CMT. I have had three EMG/Nerve Conduction Tests which were abnormal. Last one documented muscle atrophy in my right hand, upper arm and calf. My represent neuro has no explanation for the atrophy. What can I make of that?

  • Neuo is not going to do any more testing and we don't have an other appt scheduled as he is definite about ME and FND. He had no explanation about the muscle atrophy even thought the last EMG/NCT documented this. I am confused and feeling a bit like he has blown me off. I have left a message with my PCP for a referral to an endochrinologist. Feel like I have to change directions. I don't want to go to another neuro as past experiences prove they read the records and don't explore further. This has been a long, going on 7 yeas now, and awful experience that is shared by way to many.

    Thanks for your reply and information.

  • Tewa,

    I haven't got much advice to offer as I'm still new to this myself.

    I really do understand how your feeling right now, it really is a up hill battle with the Neurologists.

    Please don't lose hope! I just wanted to reach out to you so I'm sending a cyber hug and kiss to you.

    Best wishes to you x

  • Thank you for your words of support. I can't seem to let go of the confusion and distress after the appointment on Tuesday. I do see the total picture with neuro so busy, needing to help those who conditions are clear, and move onto the next long list of patients. My neuro has been very kind and supportive, even called me after a recent severe flare-up. Still, now I feel dropped since he is not going to pursue...and he admitted he cannot explain muscle atrophy as well as other symptoms that don't seem to fit under ME/FND. I suppose I need to accept what the has offered, be grateful and accept what is? Thanks for understanding. Sending you the same.

    Best to you. xo

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