Good morning, doctor,
I am a 41 year old
femaleCondoms
Female condoms
Female sexual dysfunction, 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
weaknessWeakness predominantly on my left side, Most noticeable in my arms,
handsHand or foot spasms
Hand tremor 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
headHead and face reconstruction
Head injury
Head lice
Indications of head injury
Radial head injury. 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
normalNormal saline flush 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!
Any help on these questions would be so thankful.
Jay
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.
Sincerely,
CCF Neuro MD
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.
Jay
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.
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'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?
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
CCF Neuro MD
CCF Neuro MD
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
CCF Neuro MD
The hand clawing sounds like Dystonia. It can be induced by certain medications Like amytripteline.
CCF Neuro MD
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. :oŢ I am going to ask him to do another holter to make sure it's necessary. I'll be seeing him May. Other than that, I am doing fine.
Hang in there and keep me posted.
CCF Neuro MD
CCF Neuro MD
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?
CCF Neuro MD
cervical area? I am having lumbar surgery (L-5) and then
later on cervical surgery (fusion with both )...thanks
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.
CCF Neuro MD
- 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!
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.
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.