It was nice chatting with you last night. It is all right that you just wanted to vent and be heard. That happens with anyone who is tired of being sick. You did just fine. I am sorry I lost my connection and didn't get back in time. Maybe we can chat another time.
As for your symptom list - that is a difficult one. Certainly some of your symptoms seem like they could be MS. But you have many more that are not usually associated with MS.
Rashes, feet swollen in the morning, painful lymph nodes, heart burn are ones I have never heard associated with MS.
joint pain, nausea, eye pain (dry feeling?), menstrual pain, are also not normally associated with MS.
It seems as you are fighting some sort chronic infection. Have you ever been tested for lyme disease? Maybe that is the way to go. Or perhaps a rheumatologist? These are just some suggestions.
I was dx w/MS years and years ago - I had many of the symptoms that you have described and the MRI reflected much the same. It affected my central nervous system and I had arthritic symptoms, changes in my cycle, migraines related, lymph involvement, the numbness and tingling, nausea and on and on...
Many of these symptoms are indicative of some type of inflammatory response. So, your quest is to figure out w/your doctor what is driving this in your body. Whether infection or something else.
I do have questions and of course, no, we are not physicians. We can listen and perhaps pose those questions that we often need others to ask us to help us be informed and better prepared for a visit to the doctor so that we can advocate in a way that achieves the standard of care that we need and merit.
Q. Where do you live?
Q. Can you identify anything significant event that occured either in health, diet, environment, activity, physiologically or emotionally (not for the purpose of some weirded out response,but related to immune response)...?
Q. Does your pain stay in the same place, move around or migrate from one location in the body to another or resolve as the day goes, etc??
Q. How old are you?
Q. Have you taken photos of the rashes. If not, and if you still have them or see others, take a picture. In the meantime, describe your rashes, please.
Q. That's nice that the neuro could relate to your sensitivity neurologically; but my question would be "is this typical of your reactions in the past or is it something new."
The pain in your neck could be causing some of the systemic and/or referred pain; however, if you have some type of chronic infection developing, it could reflect in this way b/c of the inflammatory response infections evoke.
Did your doc run a chem panel to see how your white blood count looks and/or if your body seems to be fighting an infection? ANA? Autoimmune markers? Thyroid panel? Immune Complex markers?
Gretchen1 may be recommending something that would be worthy of checking into regarding Lyme disease; but you would need to be with a physician who understands how to appropriately test and diagnose you b/c of different standards of care that are in the midst of a heated political battle. This simply means that if you go to a primary care that does not treat chronic Lyme, a basic standard lyme titer will be run which is known for its lack of specificity and sensitivity, yet is used b/c docs do not have adequate up to date tools nor the education yet. If you choose to test for lyme, you just need to know that the CDC guidelines state that it is a clinical (based on your physical symptoms and history) diagnosis backed up by labs. We can be of help to you if you choose to go in that direction.
You may email me. I am not generally on this site; but, came on invitation b/c of someone who read your post and cares about your wellbeing and was concerned about your symptoms being properly diagnosed.
Gretchen1, would you also keep a watch and float a note if I miss something or can be of further service. There are others who are here at HW who may be able to be of encouragement in helping you to 'know'.
In the meantime, many have walked in your mocossins, so know that you are not alone. You are right to ask the questions and it will be part of the puzzles that comes together as you learn to advocate until you know.
God bless, Sojourner
You can also contact me through the Lyme disease Forum here on HW if you would like to communicate. Just initate a thread w/my name and others will ring my bell! Hang in there! You are going to get your answers.
We have beautiful, caring moderators!
"For there is no secret and there is no defense; there is no possibility of control except through the aroused understanding and insistence of the peoples of the world. We scientists recognize our inescapable responsibility to carry to our fellow citizens an understanding of atomic energy and its implication for society. In this lies our only security and our only hope - we believe that an informed citizenry will act for life and not for death. The release of atom power has changed everything except our way of thinking...the solution to this problem lies in the heart of mankind. If only I had known, I should have become a watchmaker." ~Albert Einstein
Hi mjp123. Gretchen1 asked for some input on your post from people who have Lyme.
How long have you had symptoms? What do your rashes look like? If you have not done so, be sure to get photos of them. It is important documentation. Place something near the rash, like a coin or ruler, before photographing to give it size definition. Document the date the photos were taken.
Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest growing infectious disease in the US after AIDS, and it is in every state. Many people are bitten by ticks without knowing it. They are tiny, they inject a numbing agent so you cannot feel them on you, and they often go in hard-to-see places. Some people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS. I do not know much about MS, but I know that in some cases Lyme disease can cause MS-type lesions.
Below is a Lyme symptom list. You can have any combination of symptoms.
When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. The co-infection Bartonella can cause swollen lymph nodes and sore throats.
If you need a doctor recommendation, you can email me at firstname.lastname@example.org
I also recommend having your thyroid function tested. Thyroid disorders are not uncommon and can cause many of the symptoms you describe. I suggest that you have your Free T3, Free T4 (besides the T3 and T4) and thyroid antibodies tested in addition to the normal panel. They are not usually done but are necessary for a comprehensive view. If you need help interpreting your results, let me know.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner.
Don't give up, you will find out what is wrong.
Post Edited (rhondab) : 7/1/2008 7:48:34 PM (GMT-6)
I am certainly no expert. It seems that you have several white matter lesions. They are all quite small in size. Many times the ones that are less than 3 mm don't even show up. The 9mm lesion is a decent sized one. Frontal and parietal lobes are definitely places where MS lesions can show up. But again, lesions are caused by many things. It will be up to your doctor to sort things out. I know you are also investigating lyme disease and that may well be the cause of those lesions.
You have an extremely long list of symptoms and some of those really seem to be from sort of infection. The swelling of your feet in the morning, the rashes and the lymph nodes are not usual symptoms of MS as far as I know.
When do you see the doctor again? What other tests is he/she going to run? I would expect to see blood work and a lumbar puncture to go with this. I would also seriously look into the lyme. Lyme is very very hard to diagnose. The blood tests are notorious for showing false negatives. You may want to post on the Lyme board as to the best labs to use. I know Igenex can be a good one. Keep us posted as to what you learn from your doctor.