Good morning, doctor,
I am a 41 year old female, 5'5", 128 lbs. I have been undergoing neurological tests for 5 years in search of a diagnosis. My main symptoms are muscle fatigue. muscle weakness predominantly on my left side, Most noticeable in my arms, hands and legs. I also get a very intense burning sensation on my skin, predominantly my back arms and legs. I have dizzy spells that sometimes start with my eyes rolling back in my head. I feel like I am being knocked over from behind although I don't fall. Except for a grand mal type seizure last November. Because of this my Neurologist ordered an EEG which was apparently normal and and MRI which will be done in March.
Exercise seems to bring on the muscle fatigue very quickly. I am still able to swim, but not do aerobic activity without getting dizzy and weak in a matter of minutes. My neurologist originally thought I might have a mitochondrial myopathy or calcium channelopathy. He had ordered MRI, EMG, spinal tap, bloodwork and muscle biopsy (Right upper leg). The muscle biopsy did not show the ragged red fibres he was looking for.
I was later sent to Montreal Neurological Institute for further testing and the only thing they came up with was that I had myodenylate deaminase deficiency, Which as far as I can understand could cause muscle fatigue, but not the rest of the symptoms. I can remember reading on the Montreal neurologist report that she found "clonus" and "cogwhheeling rigidity".
My husband feels that my dizzy spells look like seizures. Can you tell if a MRI would provide evidence for mitochondrial disorders, channelopathies, siezures or MS. What exactly are the neurologists looking for on an MRI? I am currently on 20 mg. of Prozac and 400mg. of amantadine daily, both of which help my fatigue and the burning sensation.Any input would be appreciated. Thankyou!
Sorry that you have had such troubles and profound symptoms. The combination of focal weakness, parasthesias, muscle fatigue with exercise, seizures, but also clonus and extrapyramidal symptom of cogwheel rigidity is difficult to sort out as all these symptoms are almost incompatible with a single etiology. In the majority of cases, with multiple seizures an EEG should show something. There is the chance of a frontal lobe etiology that can have a normal EEG but your symptoms do not sound like they are frontal lobe in origin. Profound weakness and clonus are usually not seen together. Usually spasticity and clonus indicate upper motor neuron signs, and the extrapyramidal sign of cogwheel rigidity indicates insult to the extrapyramidal tracts involving the basal ganglion, like in Parkinson's. However, weakness is not a large compliant in this disorder. Mitochondrial disease could give muscle weakness, fatigue, and extrapyramidal ridigity and also seizure-like events. The muscle biopsy would not have to present with red ragged fibers as we usually do not see this except if specific types of mitochondrial diseases. We usually, but not always find increased mitochondrial numbers in the EM of the biopsy. However, you labs should have shown some abnormalities in serum and urine amino acids and/or organic acids. The deficiency of myoadenylate deaminase might induce fatigue with exercise but certainly not give you profound muscle weakness or clonus or rigidity. What did the EMG show? So, I am alittle confused about what your symptoms might be indicating.
Anyway, the MRI will show structure, changes in these structures and vessel blood flow. These can be looked at by using various acquistions of the radiofrequencies. So, if you have MS, one should see demyelination lesions in characteristic patterns. Sometimes mitochondrial diseases will give you changes in the basal ganglion and maybe some changes with the MRS (if this is obtained). Epilepsy can give you a completely normal MRI, but in some cases we can find areas of sclerosis (hyperintensity in the hippocampal regions) or neuronal migration abnormalities, or other known etiologies of epilepsy or seizures. Unless, there is a structural lesion the MRI will likely not add to the diagnostic query.
It sounds like alot going on here and while I can't begin to sort it I Encourage you to take a second look at the seizures if your husband thinks they are seizure in nature they could very well be and just because the EEG hasn't picked it up doesn't mean much either. Are you on any Meds? I HOPE YOU FEEL BETTER.
I have been having the same symptons for 5 months now. I have started seeing a neurologist and go back for my second visit this week. My regular physician gave up after many blood tests, two CTs and an MRI of head and neck. I am having burning tingling spots all over my body, sparatic right side face numbness and almost a swelling feeling in my right nostril and ear that will go along with complete disorientation and not being able to think or even forgetting where I am. Constant left side body aches and burning, sometimes spasms and tightness, and a generally tired out feeling really quick if I exert myself and mucsle soreness in the morning when I really didnt do anything the day before. I have seen a few sites on MS and it describes my problems to a "T"; although the doctors have not said I have it. The problems I have will come and go where I will be bothered with it for 2-3 weeks and then it will go away for 1-2 weeks and I feel great and then it comes back again. Also my problems go away while I am asleep and come right back an hour after I am up and moving. Is this common with MS??.. Just wondering if my neurologist should look into this more. When my MRI was done I dont think they were looking for MS, I think he was looking for more of a stroke related or nerve thing. Even if he was not looking for it would MS still be visible in the MRI or do they have to have the equipment set up to be looking for certain things? I was sent to a physciatrist for the anxiety all of this has been causing me. She said anxiety is normal when you do not know what is going on with your body, but she also said that anxiety would not cause all of these lingering symptons I have and gave me a prescription for clonopin to calm my nerves some and ended it after only two meets and said I really need to seed a neurologist about this. The funny thing is the clonopin really helps some with the burning sensation also, not just the anxious and scared feeling. It never makes it go away but it does make it feel better.
Any help on these questions would be so thankful.
The MRI is not diagnostic of MS. It only helps in the diagnosis. Although MS can present with parasthesias the symptoms would not as frequent as you describe without any MRI changes. However, one never knows and there are a few patients who present with parasthesias and no MRI findings, but they usually have an abnormal CSF, with increased MBP, oligo clonal banding etc. Yes, MS would show areas of demyelination on the MRI whether one is looking for stroke, headache, vascular malformation etc. Usually, the parasthesia are in a pattern that is focal. This would mean that the tingling would be in the legs or arms but not all over the body as that would mean that your whole sensory cortex is being affected and certainly the MRI would be positive in that case. I would favor that this is not MS, but your neurologist can tell you after the neurological exam and his/her assessement that would be much better than my internet feelings.
Thanks so much for your input. Last question, I go back to the neurologist this week. A month ago he gave me a prescription for migranes thinking that is what is causing it, even though I do not have headaches. Does that make any sense to you? The prescription did not make any difference on my symptons.
What do you think about how my problems do not bother me in my sleep, only when I wake up and start moving around?
I know you cant really make a diagnosis by reading this but by your experience and what I have told you what do you think it may be? What direction do you think I and the neurologist should be looking to find something? Its getting to me not knowing.. I had another bad episode today of my right side of my face feeling numb and swollen, and very disoriented today.
Thanks again for your time.
Thank you for your reply, Doctor.
The 1st EMG was done in May, 1995. I was told by my neurologist that the EMG was normal. He referred me to my 2nd neurologist. The 2nd EMG was done in Aug. 1995. The report to my doctor reads "detailed electrophysiological studies, including assessment of neuromuscular transmission was normal, with no evidence of either pre or post synaptic transmission defects."
After a year of clinical assessment and several normal blood tests, She referred me to MNI. She did not find clonus in her examination in Aug 1995. In October 1996 the 3rd neurologist(at MNI) noted the clonus and cogwheeling rigidity. I have not had any more EMG tests. The first muscle biopsy (May '95) showed selective atrophy of type 2 fibres, and that the ends of the fibres were angulated and there was no evidence of inflammation and no necrosis. I am sorry this is all I can remember from seeing the report. The only thing I know about the 2nd biopsy (Jan '96) from my upper left arm is that she said it indicated MAD deficiency. As far as I know all serum tests and urine tests were normal. During the May 95 testing the levels of pyruvate and lactate were opposite of what they were expecting, but I don't know if they were out of the normal range. The 24 hr urine tests have included 5HIAA, Free cortisol, 17-ketogenic steroids, aldosterone and arsenic I believe.
I really don't feel much worse, than 5 years ago. Certainly the Prozac and amantadine have helped my energy levels and burning skin sensation.
I have a few more questions. Do clonus and cogwheeling rigidity ever go away on their own or are they something that is permanent? Could they change from one day to the next? i.e. would they always appear from now on during a neurological exam?
I have a few more recent signs? _ well I am not sure if these are sign or strange habits. My left arm on its own goes into an odd position of being bent at the elbow, parallel to my waist and my left hand hangs down as if it is limp but it isn't. Then I move it back to a normal position, but it does this several times a day. It does not hurt at all. The other one is that my left hand goes into a claw like position with the fingers and then the hand stretches backwards. It reminds me of a hawks claws sitting on a perch. It doesn't hurt either but I thought maybe I was doing it subconsciously to relieve tension. Are either of these actions indicative of anything in particular? Than you again for your time!
Hi, it's me, again. Weds. night I had the wave feeling again. This time the knock down part was a little stronger or I was just more in tune(?) and I think maybe it is almost passing out or falling asleep (like a terrific drowsy feeling). It's hard to explain, it's like being drawn, almost into unconciousness, after being pushed. I think that is why I swayed the first time. (I would be afraid to tell anyone who doesn't experience these waves this,it sounds crazy). Would you agree that is part of the sensation? Maybe, if it is almost passing out,it would fit in with the neurocardiogenic syncope.
Hi jan. When I have the waves I almost feel that I am temporarily paralyzed. I can still hear what people are saying, but I can't talk or move my head. It is as though i am stuck or frozen in position, I don't think I sway, but I do feel like I am being pushed from behind. I feel like it starts in my head and travels down the rest of my body. My neurologist looks at me strangely when I describe it. I know that sometimes my eyes roll back in my head because people tell me. Today i had some at church, after a lunch, during an annual general meeting and I almost felt like I was losing consciousness, or falling asleep. This is why I wondered if eating had anything to do with it, it seems to happen at mealtime a lot. My MRI is now less than 3 weeks away and I'm hoping (possibly in vain) that it may provide some clues.
At any rate the dizzy spells have not been as overwhelming for the last 2 weeks but the weakness in my left leg has been very frustrating. Hope you are doing OK! Bye for now, Thelma
I have what I've been describing to my doctor as intense, wave-like rushes in my upper chest. They seem to radiate from the top of the breastbone and go right up through my head making my eyes feel like they want to roll back.It only happens for a fraction of a second but they are happining more frequently now. I also experience a rigidity in my muscles that makes them want to tense up all the time. I've also noticed that it feels like every bit of cartilage in my body is drying up (sounds crazy) because every joint in my body is starting to crack, pop and seize up along with little muscle tics in my arms and legs.
I'm 29, just had my gallbladder removed (after being misdiagnosed for over a year for everything from reflux to panic disorder)and I still feel very "strange". I've had several tests: thyroid, ECG (heart), bone scans, x-rays on spine and ribs, 3 or 4 ultrasounds, nerve conduction studies... I feel like I'm losing my mind and hope, I know my body and there is definitely something "not right". The biggest problem for me is living in Canada where CAT/MRI scans are extremely difficult to get. Maybe I'm fearing the worst but I hope this isn't MS. I'm tired of our Vancouver, BC doctors' condescending attitudes and generally telling me I'm over-reacting. I practically had to beg for the test that determined my polyp-covered, 3 stone, strawberry gallbladder hence my total lack of faith in my healthcare system. Any comments, suggestions anyone?
Now that I think of it, it does happen often at dinner time, like Weds., but dinner time isn't always a consistent time and yet that's a time it happens. This is why one of the first tests I had done was for blood sugars, it was negative, but often I feel better after I eat. Yes, I , also, feel like I am being pushed from behind and like I said, I ,too feel like I am going to lose conciousness or just immediately drop off to sleep (like an overwhelming drowsiness). I don't feel like the wave travels down my body, just from back to front of my head. The only time I have ever experienced weakness with my limbs (arms) was Thurs., but not with the wave, just feeling terribly nauseated. This past week I have had the wave (Weds.), Nausea and arm weakness (Thur.), and (Fri.) a mild pain in the center of my chest and just about blacking out. I think it must be from the neurocardiogenic syncope, why my medicine isn't helping is a mystery. I do hope you get some answers with the MRI, let us know! Have you had a Tilt Table Test?
Hi Jan. I have not had a tilt table test. I had never heard of it until I started reading on this forum. I will ask my doctor about it. The dizziness and waves are back and driving me nuts, and the leg weakness is worst later in the day, this is one of the more fatiguing weeks I've had in months. Not that I am doing any more, it just seems to come and go that way. Thank God it's only 2 more weeks until the MRI.
Note to Tammy: I know how frustrating it is to wait for tests, I live in Ontario. I have been waiting 3 months for an MRI. (after a seizure). I haven't had to "beg" for any tests but the waiting lists have been hard to take, and there were times I thought I might go crazy. I knew several months before the doctors did that something was wrong. My body just wasn't working like it used to. However I had a baby and 2 year old to look after, it wasn't easy. My husband is very supportive, but it's hard on him too. I don't want to sound like a psychiatrist, my neurologist suggested prozac which at first I didn't want but within 2 days of taking it the waves of dizziness lessened and my skin stopped burning so intensely. However in the meantime (3 years) I also tried the following which offered no relief: benadryl, cimetidine, zaditen, tegretol, Tylenol 3, amitryptiline, voltaren, pemoline, ibuprofen and other pain medications. So don't give up. My life is better now than 5 years ago, although it has never been what it used to be and I have never felt like I used to. I am also on another medication to treat fatigue called amantadine. I am wishing you the best of luck. I have found that the teaching hospitals are quite thorough. Bye from Thelma
Hi jan! I had the MRI 2 nights ago and will probably get results nest week. My left side has been a lot better for the last weeek and also a lot less dizzy spells. The best week in the last month. I looked up some info on temporal lobe epilepsy and to me it didn't really sound like it but who knows, the MRI technician said the requisition sheet said Seizures, but I guess they look for everything on the MRI. It is really a relief to not feel as weak and dizzy for awhile. How are you doing?
Glad to hear you have been feeling better! I remembered about your MRI and said a prayer for you. I am sure you are very anxiously awaiting the results. I am feeling better, too. My Dr. thinks I had something viral going on that was causing breakthrough episodes. Have you asked your dr. about a tilt table test? I will be watching the forum for your MRI results. God bless. Jan
Hi! I got the results from the neurologist's office that the MRI was "unremarkable". I will see my G.P. mid April and be able to read the report then. It seems as though it is not providing any new information. The last three weeks haven't been bad in terms of the waves but the fatigue has been overwhelming a lot of days, at least half. Which means I cut down on the amount of stuff I do and increase the amount of sleep to include 2 daytime naps , atleast while my daughter is in school ( 3 days a week). My left leg ia the most bothersome at the moment, I went on a short (1 1/2 hour ) field trip to a sugar bush with her kindergarden class yesterday and managed being on my feet for about an hour, which is a long time for me. But it was the best day I 'd had in awhile and I almost felt like I looked like any other normal parent until another mother asking me why I was limping. I actually thought it wasn't noticeable to anyone, because it felt as close to normal as it has felt in years. So life goes on. How are you doing? I hope well, take care!
I was so concerned because it's been awhile since you posted and you had said you expected the results the following week. I was hoping that, like me, you thought you would have the results by then, but these things don't happen as fast as we'd like. I know it's disappointing to be told "unremarkable", but finding something could've been worse. I am glad to hear you are feeling better (except for the fatigue, which I know is enough all by itself).
The last 2 weeks I've been kinda sluggish, I wish I had told my cardio., but I was afraid he'd increase my medicine (then I would really feel fatigued). Because my pulse rate has recently gone up to as high as 136 he is talking about adding a calcium channel blocker to my betablocker. Thrills. :o
Hi! How are you doing? I had 3 fairly good weeks, then got a very bad dizzy spell playing junior monopoly with my kids 9 days ago. i went to bed for an hour and felt better after the nap. I saw my GP the next Monday and talked about the dizzy spells and seizure from last Nov. He said based on my description and what my husband described he would have had to take my license away. So if it happens again I will lose my license, which would be difficult as we live out in the country(in a small village). I read my neurologists report which said it could have been a tonic clonic seizure and that he elected not to treat me at this time. My GP thinks it is probably because the medication might cause more side effects than it is worth. At any rate, after we get our videocamera fixed, my husband is going to videotape the dizzy weak spells to show my GP and neurologist. I had another very bad dizzy spell on Wed. and my left side is weak again. But I am coping OK. I will post again to let you know how I am doing in a few weeks. I hope you return to this post and I hope that you are doing well!
I just rec'd the results of my CAT Scan w/contrast. I am so disappointed, believe it or not because they didn't find anything! I have had pain in my back on the right side for 2 yrs., it is getting more frequent and lasting longer. This is the 3rd dr. that said I was pointing right to my kidney and it's the 3rd test they've done (IVP and Renal Ultrasound). I am glad aspirin helps, but I am really surprised a stone didn't show up (or something). My dad and all my siblings (6) have had kidney stones, so I thought that would be the answer. I haven't any idea what they will do next.
Losing your license would be a drag, for sure! Maybe your husband has something there with video taping your episodes. What is a tonic clonic seizure? Would this explain everything going on with you?
I am sorry I am unfamiliar with Forestier's disease. There is a Forster's sign, that is seen in children with cerebral palsy (the atonic type) when they are held under the arms, they flex both legs at the hips.
Hi Jan. I tried to post a reply the other day and it didn't get there. I am doing ok. A tonic-clonic seizure is the new name for a grand mal seizure. It would not explain all my strange symptoms but is just another sign or symptom I think. The fatigue and left sided weakness are the most bothersome at the moment. I am still having the waves pretty well daily, but they are not as incapacitating as a few months ago. I had some whopper headaches this week, but have gone to the chiropractor and took Tyl #3 and it is now minimal. I had a massage 2 weeks ago and my masseuse noticed for the first time that there was less muscle on my left side. I was lying on my stomach and she was doing my back and legs. I have gone to her for 10 years. I am so glad my kids and husband are healthy, I don't think I could deal with anything more. How are you doing?
I cut my pm dose of atenolol out because I believe it was making me depressed! I am going to let my cardio. know when I see him in a couple weeks. I discovered this when I had to go off it for a thallium stress test. I am so glad I figured it out! I didn't know what was going on with me! Unfortunately, I don't feel as well physically since cutting the dose. Not that I feel terrible, I just feel like I am out of shape (and I get a good bit of exercise). Doing the stress test I felt like I never excercised! So, have the dr.s started treating you in any way, for anything?! Do you still have your license? Has your husband been able to video tape an one of your episodes yet?
Hi jan! I was at the doctor today, not my regular one but one in the same clinic and i will see my doctor in a month. He prescribed inderal today as a headache preventative but said I might not notice the difference for a month and to keep taking Tylenol 3 for the headaches (the only thing that gives me some relief) I tried cutting my dose of prozac in half but my skin feels like it is burning within a few hours. So I tried cutting the amantadine in half and then my energy level is so low and my speech starts slurring etc. So I am curious to see what the inderal will do. if there are any side effects etc. He said that it would not interact with or affect the prozac and amantadine. I feel like I will never get off these 2 drugs, but that is OK if it keeps me functioning somewhere nearer to normal.The dizziness hasn't been as bad, but it's still there. We got our videocamera back last week but haven't had a bad enough dizzy spells to tape it yet. I'm sure it'll happen soon enough. Have you ever been on inderal(propanolol)? I am glad you are figuring out some of your problems with medication. I'm often wondering if there is a better drug for what ails me. I've had some better days in the last week and feel pretty upbeat for me right now. Take care, I'll post again when i figure out if the inderal does anything or have any other news.
I know how you feel about not wanting to take medications. It took my dr. 3x's before he convinced me to take atenolol, I feel so much better now (well, I felt better on the prescribed dose
- the depression). I haven't tried propranolol, my dr. suggested we try verapamil, but one side effect of that is abnormal behavior/psychosis (wonderful). If I was depressed with the atenolol, I wonder if that would mean I'd be more susceptible to that! Also, I read that beta blockers can increase your risk of diabetes, which concerns me because my mother was diabetic and my older brother and sister are. My appt. is the 14th, so I'll see then. I wonder how I did on the stress test. Take care, I hope things continue to go well with you!
Hi Jan! How are you? I am still having very bad headaches but I don't think they are migraines. The first week on the inderal I felt a lot better, less dizzy spells and more like my old self. but the past two weeks have had headaches most of the time and taking 2 or 3 tylenol 3 a day, so i'm managing. I really can't tell that the inderal is doing anything yet for the headaches. My legs are generally feeling weak, like they are both going to collapse at the knees. However I am still keeping up with the household, laundry, kids stuff etc. I see my doctor July 6th. Maybe he'll have some other suggestions. I really can't tell what my headaches are from. I hope you are doing ok. Sometimes I just feel like going off all the medication to see what would happen. The last time I did that was under the neurologists direction and it was hard to speak, walk eat etc as well as my skin felt like it was on fire and I was incredibly irritable. Will keep in touch . I hope you are doing well or at least ok.
Hi Thelma, you must have alot of character to be able to perform household duties in spite of all you are going through! God bless you! I wonder, too, how can you do anything taking all that tylenol 3? Be careful, I became addicted to it using much less than that. If you get a cold you can't get rid of, like sniffles, check it out. You still don't have a diagnosis, do you?
I am awaiting the results of my holter monitor test to see if the small dose of atenolol I am on is enough to control the arrhythmia. I sure hope so, I feel much better (I wouldn't mind a little bit more energy). My cardio. was concerned because my blood pressure was 133/88, but today at my pcp it was 118/80. My stress tests results were real good. That brought a smile to my face. So, I just need the character that you (and my mother) have and life will be just fine.
Comment to Thelma,
I am not a doctor , nor a nurse, however regarding
the seizure-like things that you mentioned happened
(or a re happening), could it be that a combination
of incompatible drugs are causing them. Saw a
program about a woman who was on Prozac, and started
having muscle rigidity, dr prescribed I don't know
what for that and the woman is having horrible
spasms. Don't know if she has gotten help yet.
Drugs are potent, and affect people differently.
Hello everyone I have a question and need some advice in the past year I went from being perfectly healthy to very sick I found I had gallstones and I had my surgery in November it seems ever since that surgery I've gotten worse I just found out I have sphincter of oddi dysfunction ibs Kidney stones migraines and anemia. I just did some research and found if anemia is left untreated it can damage the nerves and the heart (which my doctor didn't tell me anything about she said anemia just means you need more vitamins) so she gave me a months worth of vitamin b12 and iron and I finished those and thought I was all better but now I've developed some nerve problems and I was wondering if you could tell me if it's caused by my anemia or not. I've had an eeg and a brain mri done all normal. My symptoms are- severe twitching, swelling of the eyes, tingling and burning feeling in my arms and legs, and numbness in my arms and hands, and its only happened once about a month ago but I woke up and I could barley move I felt extremely weak and when I stood up I couldn't straighten my legs all the way. Any advice you can give me would be greatly appreciated
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