Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
Questions about MS
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
Questions about MS
by usedtobenormal, Dec 10, 2006 12:00AM
I am a 37 year old female. I am not on any meds. I have been diagnosed as highly probable MS. I have several small 9 "stable" white matter spots on my MRI most visible with FLAIR. A questionable spot in the corpus callosum. Borderline VEPs, negative LP. No spinal cord spots.
The differential diagnoses have been ruled out.My symptoms began eight years ago but have increased in intensitiy and duration since.
I do have several symptoms which include the following:
Optic neuritis, (three times)both unilateral and once bilateral
Numbness
Facial Tingling, especially the left ear
My legs extremely tingle after exercise
My most bothersome almost daily issue is "brain fog" that seems to come and go. During this brain fog or "groggy" period, I feel so strange. I cannot think clearly, speak clearly, see clearly, or hear clearly. I feel uncoordinated. Even walking feels strange. I just try to function the best I can. I work in a demanding professional field and I try to do the best to hide this when it happens. It can last for several hours for several weeks. Then seems to almost completely resolve only to return ago several weeks later. Sometimes being in a busy place like Walmart seems to bring it on temporarily. But it also can happen when I am at home and nothing eventful is going on.
My question is how many cases of highly probable MS convert to definate MS? Should I be more proactive in obtaining medication? Is there anything I can do about this brain fog?
Is there anything I can do to prevent definate MS?
Thank you for your help.
The differential diagnoses have been ruled out.My symptoms began eight years ago but have increased in intensitiy and duration since.
I do have several symptoms which include the following:
Optic neuritis, (three times)both unilateral and once bilateral
Numbness
Facial Tingling, especially the left ear
My legs extremely tingle after exercise
My most bothersome almost daily issue is "brain fog" that seems to come and go. During this brain fog or "groggy" period, I feel so strange. I cannot think clearly, speak clearly, see clearly, or hear clearly. I feel uncoordinated. Even walking feels strange. I just try to function the best I can. I work in a demanding professional field and I try to do the best to hide this when it happens. It can last for several hours for several weeks. Then seems to almost completely resolve only to return ago several weeks later. Sometimes being in a busy place like Walmart seems to bring it on temporarily. But it also can happen when I am at home and nothing eventful is going on.
My question is how many cases of highly probable MS convert to definate MS? Should I be more proactive in obtaining medication? Is there anything I can do about this brain fog?
Is there anything I can do to prevent definate MS?
Thank you for your help.
Doctor's Answer
by CCF-Neuro-M.D.-SH, Jan 02, 2007 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
Multiple sclerosis does not manifest in just one degree of severity. Some people can have very mild MS and be diagnosed in their 30s, 40s and even 50s. Given their mild MS they may never reach all the strict requirements for the diagnosis and are able to live their life with minimal affect of the MS. On the other hand some people are diagnsosed in their teens and early twenties with devasting MS and are in a wheel chair for their mid to late thirties. There is a whole spectrum inbetween these two extremes. I would recommend that you get regular (often yearly) neuroimaging to assess the progress of your current lesions and to report any new symptoms right away to evaluate for GAD-contrast enhancing lesions. Treatment at your stage would not be unreasonable, I would contact a MS specialist to discuss disease modifying therapy. Despite our therapies, we are not currently able to stop the progression of MS.
The "brain fog" that you describe may be related to a number of things. The most common thing that causes these symptoms is depression. A trial on a anti-depressant may be helpful for you. Other possible explainations are confusional migraine auras and seizures. An EEG (brain wave test) would be reasonable since people with MS do have a higher incidence of seizures.
I hope this has been helpful.
Multiple sclerosis does not manifest in just one degree of severity. Some people can have very mild MS and be diagnosed in their 30s, 40s and even 50s. Given their mild MS they may never reach all the strict requirements for the diagnosis and are able to live their life with minimal affect of the MS. On the other hand some people are diagnsosed in their teens and early twenties with devasting MS and are in a wheel chair for their mid to late thirties. There is a whole spectrum inbetween these two extremes. I would recommend that you get regular (often yearly) neuroimaging to assess the progress of your current lesions and to report any new symptoms right away to evaluate for GAD-contrast enhancing lesions. Treatment at your stage would not be unreasonable, I would contact a MS specialist to discuss disease modifying therapy. Despite our therapies, we are not currently able to stop the progression of MS.
The "brain fog" that you describe may be related to a number of things. The most common thing that causes these symptoms is depression. A trial on a anti-depressant may be helpful for you. Other possible explainations are confusional migraine auras and seizures. An EEG (brain wave test) would be reasonable since people with MS do have a higher incidence of seizures.
I hope this has been helpful.
Have you had blood work done to rule out connective tissue diseases (ie Lupus, Sjogren's, antiphospholipid syndrome), infectious diseases such as lyme, or vitamin deficiencies?
There is evidence that going on the MS drugs at the very first episode will be beneficial in the long term. However, just make sure that alternative conditions have been ruled out.
Dear: “Used to be normal,”
I am not yet a physician but feel that I may be able to offer some suggestions to you regarding your stated pathology and the unknown etiology you are experiencing.
I believe that findings ones diagnosis is first a massive responsibility of the patient. You obviously have kept good record of your experiences with these annoying circumstances. As a man (age 28), misdiagnosed with Multiple Sclerosis, when everything appeared that way simplistically, found my own diagnosis and it was upheld by Yale, I have dedicated my life to being helpful when I can to others who have no answers. It is detrimental to your health, as well, to be left in the dark.
I did notice a couple of hallmark variables in what you wrote and I would like to ask you to consider the fact that differential dx (diagnosis) has not truly been ruled out, for example, we are human and we miss the obvious ever so often. Therefore, it may be possible that something got missed. I write this for a few reasons.
The fact that your LP turned up negative and yet you have sclerosis proven on an MRI is highly indicative that you may have a version of MS that is caused by Lyme disease. You can learn more about LD by going to lymenet.org where you can read and ask questions to LD patients. This differential dx is often missed by most physicians due to the fact that the blood tests are admittedly unreliable. The dx is clinical and requires a pathology, thus, the patient is nearly in charge of this diagnosis; he can make or break it for himself if he does not know or does not share a clear and factual history.
Ever symptom you mentioned has been reported in LD, as well as the clinical findings, and though LD patients can have positive LPs, they are more likely to show up negative results.
What catches my eye for LD the most (I am not a LD fanatic) are the following variables:
1. “My legs extremely tingle after exercise” –A hallmark in LD and not so much in MS.
2. The waxing and waning of your symptoms, for example, MS attacks do not occur from minute to hours, but rather, as I am sure you know from weeks to months. LD is known for being a condition that w/w.
Most would say that there is hardly anything you can do from preventing the track of MS aside from the traditional medications, which for most, give the patient more time before it progresses. There is, however, and experimental and rather controversial therapy which is called “Low Dose Naltrexone” most commonly referred to as “LDN.” I would suggest going to google.com and entering “LDN” for some personal research. It has been reported to stop disease activity in MS, et al, for thousands. Most MDs either know nothing about it, or, disagree. There are no side effects, it runs around thirty dollars per month, and is compound. It is given in dosages from 1.5 mg-4.5 mg.
I hope that I was helpful, but, I really suggest that despite locale you look more into LD and so some research. You may stumble upon something definite.
Good Luck!
JCmcc.
DEFINITIONS OF SYMPTOMS PERTAINING TO LYME DISEASE (General Symptoms)
Check clear circle
Translated into Lay English
by ***
o Nose Tingling
o Neck Stiffness
o Neck Pain
o Jaw Pain
o Jaw Stiffness
o Jaw Cramping
o Lock Jaw (Momentary)
o Sore throat
o Clearing throat
o Phlegm (Chronic)
o Hoarseness
o Runny nose
o Decreased Hearing
o Plugged Ears
o Buzzing in Ears
o Pain in Ears
o Sound Oversensitivity
o Ringing in Ears
o Popping in Ears
o Eye Floaters
o Eye Pain (In)
o Eye Pain (Around)
o Eye Pain (Behind)
o Blurred Vision
o Double Vision
o Vision Loss
o Peripheral Waves (Eyes)
o Phantom Images (Eyes)
o Flashing lights (Eyes)
o Light Sensitivity (Eyes)
o Hair Loss
o Shortness of Breath
o Thick Speech
o Slurred Speech
o Slow Speech
o Stammering Speech
o Dementia
o Diarrhea
o Constipation
o Difficulty Swallowing
o Drooling
o Short Term Memory Loss
o Long Term Memory Loss
o Clumsiness
o Headache
o Disorientation
o Loss of Sex Drive
o Sexual Dysfunction
o Bladder Dysfunction
o Bowel Dysfunction
o Fever (Recurring)
o Infections