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Neurology (Expert Forum)
MS or something else?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
MS or something else?
by Nancy L, Aug 19, 1999 12:00AM
I really hope that someone can help me! I am 27yrs old and have always been a pretty healthy person. About 3 1/2 weeks ago, I woke up and had tingling sensations in both of my arms (elbows down to fingers and only on the top side of the arm, not the palm side) and in both legs (knees down to toes and again, top side only). A few days later I noticed some strong neck pain right where the neck and head come together. I have been seen by several physicians and I have an appointment with a neurologist in Sept. Every physician that I have seen so far has run me through a series of tests to check my strength, eyes, coordination and balance and my ability to sense pain, hot, cold etc. They even did blood work to check for diabetes, thyroid problems, vitamin deficiency and cbc. An x-ray of the cervical spine didnt show anything. Everything has been normal so far and none of these physicians seem concerned about MS. Ive been seeing a chiropractor for my back. He thinks its possible that I may have pinced off some nerve passages in the neck and that could be causing the tingling. After a few treatments with him, the tingling has gone down some but has not completely gone away. Within the last couple days, I have noticed some very mild tingling in the right side of my face (cheek to chin area). I have been very stressed out and find it hard to concentrate on my family. Could you please give me some sort of an idea of what this could possible be? Everyone has said that I dont show symptoms of MS but possible symptoms of peripheral neuropathy. Could this also be possible? Any help you can give is greatly appreciated
Doctor's Answer
by CCF Neuro[P] MD, RPS, Aug 19, 1999 12:00AM
Dear Nancy:
The diagnosis of MS is made by the patient having multiple episodes of muscle weakness and maybe sensory changes (hence the name of multiple sclerosis). As your episode has basically been singular, it is too early to make the diagnosis of MS. You you really don't describe muscle weakness, that would place MS very low on the list. The more frequent presenting sign, 30% of patients, of MS is optical neuritis (painful blurring of vision) so again this is against the diagnosis of MS. The distribution of your parasthesias is a bit unusual for a spinal cord problem as the etiology. You have upper and lower cord symptoms. Yes, it could be a polyneuropathy, meaning that multiple nerves are involved. With your laboratory test thus far being normal and no history of alcohol, diabetes, metabolic disorders, tick bite, infection, family history of similar problems, collagen vascular disorder, tumor, drugs, etc I am not sure what to tell you. It is still early in the process and since it is getting better that is a good sign. I would see what the neurologist has to say.
I am sorry I couldn't be more specific.
Sincerely,
CCF Neuro MD
The diagnosis of MS is made by the patient having multiple episodes of muscle weakness and maybe sensory changes (hence the name of multiple sclerosis). As your episode has basically been singular, it is too early to make the diagnosis of MS. You you really don't describe muscle weakness, that would place MS very low on the list. The more frequent presenting sign, 30% of patients, of MS is optical neuritis (painful blurring of vision) so again this is against the diagnosis of MS. The distribution of your parasthesias is a bit unusual for a spinal cord problem as the etiology. You have upper and lower cord symptoms. Yes, it could be a polyneuropathy, meaning that multiple nerves are involved. With your laboratory test thus far being normal and no history of alcohol, diabetes, metabolic disorders, tick bite, infection, family history of similar problems, collagen vascular disorder, tumor, drugs, etc I am not sure what to tell you. It is still early in the process and since it is getting better that is a good sign. I would see what the neurologist has to say.
I am sorry I couldn't be more specific.
Sincerely,
CCF Neuro MD
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Nancy L
Hardly, not possible unless he was blocking off the CSF drainage. If you had optic neuritis you would know. There is no doubts because the symptoms are so classic.
Sincerely,
CCF Neuro MD
Nancy
I have MS and recently posted on to an MS posting, it is do hard to get on now! You suggested I get on one of the ABC drugs ASAP
as I had just gone through a rash of 1-2 week long exacerbations.I started Avonex last Thurs. and have been having an exacerbation for 2 1\2 weeks now. Fatigued, loss of balance, eyes moving when look to left only and went thru a week of Predisone treatment which did not do anything. Neuro has now put me on a higher, longer dosage so hope it works.
Wanted to thank you all for your input and time as it has been most beneficial to me and my Dr's.
I have MS and recently posted on to an MS posting, it is so hard to get on now! You suggested I get on one of the ABC drugs ASAP
as I had just gone through a rash of 1-2 week long exacerbations.I started Avonex last Thurs. and have been having an exacerbation for 2 1\2 weeks now. Fatigued, loss of balance, eyes moving when look to left only and went thru a week of Predisone treatment which did not do anything. Neuro has now put me on a higher, longer dosage so hope it works.
Wanted to thank you all for your input and time as it has been most beneficial to me and my Dr's. Thanks and God Bless you all.
Optic neuritis is painful loss of vision (the vast majority of the time). You do not have the symptoms of optic neuritis.
CCF Neuro MD
Your symptoms do not sound like MS. The tincture of time will let you know for sure, but it sounds doubtful. See what the neurologist has to say.
Sincerely,
CCF Neuro MD
Ive tried finding you posting, but I cant --what was it called?
Nancy
Ive tried finding you posting, but I cant --what was it called?
Nancy
I didn't have any painful tingling or shaking, but after a while I had twitching in my inner thighs and a weird vibrating feeling in my feet. You mentioned you saw the doctor, I hope he was a neurologist. In the meantime, ask your doctor to prescribe some klonopin or another antianxiety and see if that helps. It helped me a lot. It can't hurt, and it will help you deal with the stress of wondering what could be wrong with you. I will be out of town for a week, but I will check back when I return to see how you are doing. Good luck.
Without examining you it is difficult to tell you. From your description they are likely fasciculations, but on the scalp muscles and back muscles.
Sincerely,
CCF Neuro MD
Fasciculations are muscle twitches. You described some trembling in your extremities, this might be muscle twitches or fasciculations. This is the problem with internet medicine, I can not get you to show me what your telling me, so I am assuming. sorry if you don't understand, tell me what you don't understand and I will go over it again.
CCF Neuro MD
I just wanted to respond to your "panicking" about the symptoms you are having. I have had trouble with tingling, buzzing, and twitching (see my 8/19 post). I was absolutely terrified when I first had symptoms, and think this may have made some of my symptoms worse. While I am still in the process of a diagnosis, I do notice that my tingling (which has subsided substantially) increased with my fatigue (new nursing mother) and with heightened anxiety. While this is in no way diagnostic, I wanted to share my experience. I understand the extreme anxiety that this brings on, and had a hard time getting through it. This period of heightened awareness can also make one pay attention to things that one wouldn't have before. I know how hard it is, but try to relax and get your mind off your symptoms, and you will feel a lot better. The more busy/active I was, especially with other people, the more I was able to think of other things. Also, the more I read/heard positive stories about people with MS (of which I found a lot), the less I panicked. Good luck to you.
Robin
A CT will show boney landmarks, cerebrum anatomy (athough resolution is minimal compared to MRI), bleeds and infarcts. This is not very good to look for demyelination. It is very poor for cerebellar anatomy.
Sincerely,
CCF Neuro MD
I know it is hard to maintain yourself when things start happening to your body that you dont understand. I fully can relate to that. I have been in the process of diagnoses now for 1.7 years. I have myasthenia gravis antibodies and a borderline single fiber emg. I have lost my lower reflexes and have a small amount in the arms. Recently, I found out that I lost my gag reflex. I have pins and needles in feet, lower legs, and hands. I have had muscle weakness, which didnt start until April 99. I have had right sided hemiparesis, and episodes where my gums went numb along with areas of my face. I am currently experiencing numbness in my gums and face again. I have numbness in my lower legs, feet, inner thighs, outer left buttocks, inner buttocks and upper to mid level back. Oh, not to forget the ice pick feeling that I have experienced in my lower right calf since Sunday. I have asked for a temporary treatment of mg to see if that would help, but my neurologist will not, until he gets a definitive diagnoses as he feels two processes are going on and does not want the other process to be masked by medication. So basically I have been living a nightmare with at least some definitive test answers regarding the mg, but not for the other symptoms that are not classic with mg. What I have learned and am still learning, is that unless you get a grip on yourself, you will just keep stumbling and causing yourself more anxiety that you should not have to deal with. It is hard not to worry, I know, worry is my middle name, but there has to be a stopping point, otherwise, it is going to affect your symptoms and your health in a negative way. Let them do the tests, and let them rule out and rule in anything that they find from them and your clinical examination. It is hard for the physicians on here to determine much more than what symptoms you have, which direction to go in based on symptoms and possible the results of your tests. Please give your doctors time, as sometimes those neurological illnesses can just baffle the life out of any doctor. You will be in my thoughts Nancy.
I hope you read my previous post. I can't offer an explanations for your symptoms, but I really can empathize with your anxiety. If you would like to email me, I'm at ***@****. It might help to talk to someone who has experienced the anxiety and the waiting -- I know how hard it is. Please feel free to write me.
Robin
I posted on MGH forum and got a reply that "Predisone is not recommended for On as it is suggested that oral predisone increases the risk of a repeat ON. Recommended that one take IV Solumedrol."
Is there anything to this?
It is almost impossible to tell you the wide range of things that can give you paraesthesias as you describe. You need to sit down with your neurologist and person-to-person have your situation explained to you. The internet is really made for this sort of thing as without actually doing the neurological exam, getting a detailed history, seeing the work up, it is impossible to tell someone they have a particular disease.
Sincerely,
CCF Neuro MD
Went in to see my long time eye phys. who is an MD and a surgeon and he said the nerve on my left eye was creamish colored which to him indicated ON but he was confused as my right eye also showed this. I told him why my Neuro did not think it would be ON as I had no pain and center of vision was not black and he said ON does not have to be painful nor the center of vision black. Why do most Neuro's say this????
CCF Neuro MD
Your symptoms are fairly non-descript for a particular disease process. The short duration of your symptoms makes the diagnosis difficult to give a direction for you to think about. I would see a neurologist. Take the results of all your tests, get a good neurological exam and see what he/she thinks.
sincerely,
CCF Neuro MD
You've just described what I am going through. I am so sorry that I didn't find this site much earlier. Can you update me on your situation. Let me know how the meds have worked. My neurologist believes the symptoms will go away once the medication kicks in. I am currently on Zoloft and T... something or other to help me sleep. I am so anxious. The neurologist has ruled out Tumour, MS and stroke. But since I started complaining about the numbness and the tingling and burning sensation, he has opted to send me for evoked potential testing. This of course has hightened my anxiety as well. Any help you can offer would be great. Katherine
I would speak with your neurologist as there are some medications that might help you.
CCF Neuro MD
they have ran blood work, exray's and physical thereapy now for about 5 months, my condition is getting woarse instead of better
thank you
brenda
Your symptoms might be many different things. I would see a neurologist and begin a thorough workup.
CCF Neuro MD
These symptoms mimick so many other diseases. Please reply to what you have found out. Your replys were from August 99.
CCF Neuro MD
4/23/00
My 34 year old son has had progressive symptoms which culminated about 2 months ago after about 7months - one year brewing:
Trouble Swallowing
Severe headaches
Left-sided weakness
Chest pain
Breathing difficulty
Heartburn
Swallowing controlled by Reglan
Headaches controlled by Elavil-type med & Motrin
Heartburn controlled by Prilosec
Breathing: CPAP machine at nite; Oxygen during the day, if needed
All tests have proven normal: Brain MRI, Spinal Cord MRI, EMG, EMG of Phrenic nerve, blood tests, CT scans, etc. His Neurologist is stumped while his breathing gets worse -- PFT tests -- 58% capacity. Diaphragm weak. Told to just get out there and walk.
He tries to be as active as possible -- breathing becoming more difficult. He joined a gym -- allowed by gym to work out 2 minutes per machine. His blood pressure goes down - then spikes. His heart rate goes down. He is weakening. He is tired.
Before all this started about 9 months - on year ago, he could bench 200lbs and play men's pickup ice hockey for 2-3hours at a time, worked two jobs. He is about 206lbs. So far, no weight loss. Pulmonologist told him not to gain weight.
He is being followed by a Neurologist & a new Pulmonologist. He is being sent for a second f/u Cardiology evaluation. His neurologist is stumped but does not suspect ALS as he has gotten "objectively better". Will be seeing neuro again next week.
Would appreciate some direction if you have some thoughts.
many thanx!
i have had xrays mri chiropractor treatmeants antiinflammatoids still no real relief
my email is ***@**** if you find out something positive
if you want to leave your email address i will let you know what we find out from a nerve conduction test which is coming next
thanks and God bless you
mf
Tom