Updated !! Is this mssounding symptoms?

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can't believe how messed up this is

Postby froggygirl23 » Thu Aug 17, 2006 11:40 am

The neuro is going to refer, they want him to see the scott white clinic (which I had never heard of before) so I called the neuro again this morning to ask for information about the scott white clinic that (she said four times was in texarkana) so I ask for the number, she gives it to me. She also asks if I'm going to call it. I said "uh- I don't know I just wanted to have it". Then I called the scott white number, and it is in temple texas. I ask them if they have a clinic in texarkana they say no. Well, I said the neuro is suppose to refer us there and I need directions how to get there. She said call information, (which I already had) I said I did that and they don't have a listing. She said we don't have one in texarkana. I was like ok. Thanky you. So I call neuro back and said "I called the number to get directions and they inform me there isn't a clinic in Texarkana so I called information and there isn't a listing there either." I said "I'm not trying to be a nusuance, but I wouldn't want her to go through all that trouble of making an apponintment if it's too far to drive" she said "I understand, there use to be one in texarkana and they might have closed it." I said the closest one is in Waco, tX. She said I believe temple is closer, it should only be a 3 hour drive. So while on the phone with her I pull up the map on google, and see that waco & temple are further south than dallas, which is a 5 hour drive and that waco is indeed closer!! She said she will call the scott white number and find out and call me back. How can this get so messed up? Before they told us that they referred to scott white clinic. Well, if that's true then why don't they know where it's at?

You might say well, when they referred before it was in texarkana but has since closed. But the number SHE (the neuro) gave me was the number for the scott white clinic in temple, tx.

Also he has an appointment with his orginal family doctor that he first started seeing when this first started. The appt is on the 22nd.

Oh great... I just called the nurse again, and she said that if we didn't want to travel that far then we would need to get a different doctor to refer us. I said it's not that we won't travel that far it's that we want to know where the closest one is. She said there is one in shreveport LA and that the nurse would call me back when she was done with the patient she was seeing. Well, it's been 2 hours, still no phone call and I looked online and called information once again and there is no scott white clinic in shreveport. Apparently they are only in Texas. Also, the neuro told us that she won't refer to University of Arkansas, because it takes to long to get in. That doesn't add up to me either, since she's telling us she is going to refer us to clinics that do not even exist!
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update :)

Postby froggygirl23 » Thu Aug 17, 2006 3:49 pm

they called back and told us they would refer to UAMS, I was like really? I thought you said you couldn't. They said they usually don't but will make an exception because of how much trouble it would cause for us to go all the way to waco, tx. I was like "that's wonderful thank you, we are happy to get the referral (sincerely) They said all they are waiting on is chest xray from hospital so they will have all the records to send them.... I told them that was two weeks ago, and she said "oh ok, then the hospital never sent it to us, I will have to call them about it"... errrrr..... When we get the referral I will be happy! but after all this, I won't believe it until I have an appointment time and a number to call to verify!
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Postby froggygirl23 » Sat Oct 21, 2006 4:12 pm

In case any one forgot who I was.... I brought this up to the top again. I really wonder if this could be primary progressive ms, anyone have any ideas or helpful websites, or maybe a good book about this that I can get the name of... I would appreaciate it. Thanks.

P.S. no insurance anymore, so doctor's visits have ceased, not that they ever did us any good anyways, but that's where we are at right now, basically no where. :( Probably should have tried to get a MRI of the spine, but to late now...
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Postby jimmylegs » Sat Oct 21, 2006 6:28 pm

hi froggy i don't know about "self"-diagnosing primary progressive ms...

i don't know about web sites or books that could help, other than those i've mentioned previously...

have you been trying anything out re: blood testing (that shouldn't be too pricey, should it?), supplementation, etc?
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Have you tried...?

Postby lyndacarol » Sat Oct 21, 2006 8:05 pm

Hi, froggy--I realize that you feel defeated. Please know that there are many friends reading your posts here who would like to help you but don't know how. We can only offer suggestions for you to consider: There are a couple clinics in my area which are designed for people without insurance or who are low-income. Could a call to your family physician find a similar clinic in your area?

Maybe some basic bloodtests could be done there at low or no-cost? The vitamin D test is done here for $68.75; as the insulin proponent here, I would suggest that one for insulin level, too (though I don't know its cost).

As I believe I mentioned in a PM (private message) to you, the dizziness seems most pressing and a general physician might be able to improve that symptom. I think it's important to have someone for the basic problems, specialists are not necessary for those.

Since I just got a flu shot yesterday, you might consider one too. It is available at county health departments or often at scheduled flu shot clinics at drug or grocery stores for $25-$30.

Take a deep breath; I'm sure there is help for you two--it's only a matter of finding it. Do you have family or friends close by who can give you a hug, moral support, or even other suggestions? Now is the time to use every resource! We here at ThisIsMS are just one' but we are here!
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Postby REDHAIRANDTEMPER » Sun Oct 22, 2006 1:07 pm

just wanted to put my two cents worth in here...lol....i have not been told i have ms...all my tested have come back normal..spinal tap mris..to many for me to count..but i have the lst of sight starting in right eye with major tiredness..memory loss whihc they say isnt normal for my age....and also tremors with loss of complete feeling in my right leg..again remind you that no one has stated i defintly do have ms but my primary looks at me and says she sees it being nothing else but ms cause they have ruled out everything else..am working on my 2nd yr with my problems...thank god i have all you to write to..cause you guys help me not go insane...so yes i have had mris done with clear results..over and over and over again...again just my two cents..

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Postby amelia » Sun Oct 22, 2006 1:46 pm

Gary had normal spinal taps, MRIs, etc. Finally they dx him as clinical MS. Now after 10+ years of clinical MS, they say he does not have MS. They are thinking Devic's Disease. There is a blood test worth 70% accuracy for it. Gary is signed up tomorrow for the test. Can you imagine 10+ years of NO dx then 10+ years of clinical MS and now, we don't know! I'll keep you all up to date on this.
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Postby Chris55 » Mon Oct 23, 2006 6:17 am

"Then he was diagnosised with "clinical" MS." Amelia--all MS diagnoses are "clinical". There are no definitive tests for MS.

Has anyone considered Chronic Lyme Disease? Here again, there are no definitive tests for Chronic LD (that according to the diagnostic criteria of the FDA.)

Here are some good websites if you are interested:


The International Lyme and Associated Diseases Society
From the CDC:
Lyme Disease Symptoms
The Lyme disease bacterium can infect several parts of the body, producing different symptoms at different times. Not all patients with Lyme disease will have all symptoms, and many of the symptoms can occur with other diseases as well. If you believe you may have Lyme disease, it is important that you consult your health care provider for proper diagnosis.
The first sign of infection is usually a circular rash called erythema migrans or EM. This rash occurs in approximately 70-80% of infected persons and begins at the site of a tick bite after a delay of 3-30 days. A distinctive feature of the rash is that it gradually expands over a period of several days, reaching up to 12 inches (30 cm) across. The center of the rash may clear as it enlarges, resulting in a bull’s-eye appearance. It may be warm but is not usually painful. Some patients develop additional EM lesions in other areas of the body after several days. Patients also experience symptoms of fatigue, chills, fever, headache, and muscle and joint aches, and swollen lymph nodes. In some cases, these may be the only symptoms of infection (OR NO SYMPTOMS AT ALL--THIS FROM ME!).

Untreated, the infection may spread to other parts of the body within a few days to weeks, producing an array of discrete symptoms. These include loss of muscle tone on one or both sides of the face (called facial or “Bell’s palsy), severe headaches and neck stiffness due to meningitis, shooting pains that may interfere with sleep, heart palpitations and dizziness due to changes in heartbeat, and pain that moves from joint to joint. Many of these symptoms will resolve (BUT NOT PERMANENTLY), even without treatment!).

After several months, approximately 60% of patients with untreated infection will begin to have intermittent bouts of arthritis, with severe joint pain and swelling. Large joints are most often effected, particularly the knees. In addition, up to 5% (I WOULD ARGUE WITH THIS PERCENTAGE. IF SOMEONE DOES HAVE LD AND IS MISDIAGNOSED, THEN THIS PERCENTAGE WOULD BE HIGHER) of untreated patients may develop chronic neurological complaints months to years after infection. These include shooting pains, numbness or tingling in the hands or feet, and problems with concentration and short term memory.

Most cases of Lyme disease can be cured with antibiotics, especially if treatment is begun early in the course of illness. However, a small percentage (AGAIN DISAGREE) of patients with Lyme disease have symptoms that last months to years after treatment with antibiotics. These symptoms can include muscle and joint pains, arthritis, cognitive defects, sleep disturbance, or fatigue. The cause of these symptoms is not known. There is some evidence that they result from an autoimmune response, in which a person’s immune system continues to respond even after the infection has been cleared (WITH ALL THE READING I HAVE DONE ON THIS DISEASE, THIS IS A NEW ONE!)
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Postby amelia » Mon Oct 23, 2006 8:09 am

Gary has been through the tests for Lyme's, Syphillis, Myathenis Gravis, Gullien Barre, etc.
MS will eventually show up in test for most people. Given 25+ years, there will more than likely be some sort of scars somewhere. He does have stenosis in the neck. But the characteristics of NMO being different from MS are:
a long transverse Melytis, MS is usually short or small
a normal brain scan: TYPICALLY MS will affect the brain, although not always (ONMS is the exception to the rule)
a narrowing of the spine; not common for MS
a spinal tap not showing MS

Although these test are not 100% either. That is why MS and NMO can be misdiagnosised.
He went for the blood work today that must go to Mayo clinic only. It will be 5 days minimum for the results. But what is 5 years when you been going over 25 years
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