MS/Lymes--Anyone have them? How do you get a diagnosis?

[BusynMember]

Most of my life I've known I have some neurological problem. Started in my early 20's--heaviness one side of body, dizziness left eye, cognitive difficulties (I'm on SSI for this--lots of short term memory issues and face blindness), moodswings, tingling in my arm, lost most of my hearing once for three days, ataxia, vision problems etc.---early on nobody could find anything and I gave up, but I knew then and know now that I have something that is debilitating but doesn't kill ya.
I think it's either mild MS or Lymes. I have read that both are hard to diagnose. I have a Neurology appointment next month for the first time in years. Is it even worth it? I had a CAT scan recently and they said "normal", which I'm getting used to hearing. I've read that an MRI is better.
Any particular tests I should demand of this Neuro? Everyone EVERYONE agrees that I have "soft neurological signs"--just nobody can pin it down. Whenver I read symptoms of MS, I think, "Yup. That's me." But Lymes too!!!! So what do you do if you may have something hard to diagnose? I'd like to get treatment if something is wrong and there's help.
Thanks in advance.

 

[Lothlorien]

Lyme's tests frequently come up as inconclusive. Generally, the onely definitive test is a lumbar puncture, but even then it can come up as inconclusive sometimes. Lyme's can manifest itself in many, many ways and it is hard to diagnosis if the tests come up inconclusive. The longer it goes untreated the worse it usually becomes. It can also be dormant in the body for a long time before symptoms show up in some people, so it's possible that you could get a tick bite and not have symptoms for a couple of years.

I had always thought that MS was generally a clinical diagnosis, but was just watching something the other day, where they did tests for MS....so there must be some testing that can be done.

 

[Mattsmom277]

I have MS. It is often found after they rule out everything else. It for me and many others is a long and frustrating process. CT scan will do nothing to help diagnose MS for example, but can help pinpoint if other things are the cause of your problems.
I was sent to someone for EMG testing on my arms and legs. This ruled out parkinsons and trapped nerves etc. And showed that although no proof of a cause, that signals to my nerves were not connecting properly from my brain.
I had MRI with and without contrast on my head, and my upper and lower spine. That one came back okay, or rather "inconclusive". That frustrated me.
I had a ton of blood and urine tests. I saw a endocronologist. More tests.
Finally I was at a neurologist. We decided on a repeat MRI. And then lesions were found and MS was able to be diagnosed. Sometimes lesions won't show on MRI. Sometimes if nothing else is showing up and they believe MS is likely after ruling out other things, they will order a spinal tap. In MS patients, our spinal fluid contains things called "O bands". (obligonal bands). It is painful as all get out, but often so helpful to getting a diagnosis.
Now meanwhile, even if they do not know what is causing your problems, they can treat symptoms. I was on medications long before a official diagnosis. They used medications to treat my vision, my vertigo, my leg spasms, my leg weakness, my pins/needles awful feelings in my limbs, my bladder problems etc. So at the minimum, while this neuro is investigating what the problem could be, ask for some help in treating the symptoms. Most will be more than willing to treat the symptoms.
Best of luck to you, I hope you get your answers soon.

 

[Josie]

Chronic Lyme Disease, which is what you would possibly have, is very controversial. The prevailing viewpoint, from IDSA doctors, is that Lyme can be cured with 4 weeks or less of antibiotics and whatever symptoms you are left with are an autoimmune response to the infection. They do not acknowledge chronic Lyme.

The other viewpoint is that an infection can remain after antibiotics and that long term antibiotics can help. These doctors are a smaller group and belong to an organization called ILADS. These doctors diagnosis Lyme clinically and use Western blot test from a lab called IGeneX as a support for their diagnosis. This IGeneX test is viewed to be the most accurate by the ILADS doctors, but even it is only 80% (I think) accurate.

A Western blot test done by a lab other than IGeneX does not test for as many bands and will not detect Lyme as frequently. On the other hand, the IDSA doctors feel IGeneX has too many false positives.

Most neurologists have aligned with the IDSA doctors. If I were you, I would ask the neurologist for a Western Blot Lyme test, preferably from IGeneX. They probably won't want to use that lab, so you could start with the regular test. If is positive, then you won't have to spend the extra money on the IGeneX test. My insurance paid only a small part of this test.

If you really want to rule out chronic Lyme, you should go to an ILADS doctor. Generally, they do not take insurance. You can read a lot of bad things about them on the intenet, but the ones I have met seem honest and educated to me. They will spend a couple of hours on the first appointment and rule out other illnesses before diagnosis'ing Lyme. Many of them started treating Lyme when someone they knew had chronic Lyme and they could see that treatment helped.

It is hard to know which side of the chronic Lyme debate is right. However, I have Lyme diagnosis with a few symptoms of Lyme (muscle twitching, shortness of breath, and joint pain are the main ones) and a positive IGeneX test. When I take antibiotics, these symptoms are mostly gone so I think the ILADS doctors have more to offer. My regular doctor thinks stress is causing my shortness of breath so I haven't found her to be very helpful. I am certain that my shortness of breath is not an anxiety attack, especially since it goes away on antibiotics.

I always thought MS was a clinical diagnosis, too, and that there was no known cause. At least some of the ILADS doctors believe MS can be caused by Lyme. The MS and Lyme symptoms have a lot of overlap as you have seen.

I hope you can get some answers and some help.

 

[flutterby]

MS is an autoimmune disorder that causes demylination of the central nervous system. There are no tests that can definitively diagnose it, as there aren't with most disorders, but there are tests that can suggest it - or support clinical findings.

http://www.nationalmssociety.org/about-multiple-sclerosis/diagnosing-ms/index.aspx

I have yet to be tested for this and I am not happy about that. We're waiting for the results from the Cushing's test and if it's negative, I'm going back to the neurologist. I have tingling in my hands and feet, muscle weakness, muscle spasms, bladder spasms and incontinence, balance issues, visual disturbances...etc, etc, etc. The neurologist I saw who I didn't like at all left the practice so now I can see another doctor there. Hopefully, that one will be better.

FOP is the go to person for Lyme Disease.

 

[BusynMember]

Thanks SO MUCH, guys. This explains how I don't have a diagnosis. I know it's one of those disorders. It's kind of like I knew my son was on the autism spectrum even though the doctors kept saying "ADHD" "Bipolar."

I will push Neurologist.

I don't think I can pay out of pocket for any doctor, unfortunately. I may just ask GP for the normal treatment for chronic Lymes. She knows about my troubling symptoms and at least she believes them.

 

[Lothlorien]

I think its easier to get a Lyme's diagnosis in along the East Coast because its much more prevalent here. A lot of docs in the rest of the country are not well-educated in this condition.

 

[Josie]

If you are going to try with your regular GP, you could print out a list of Lyme symptoms and the ILADS treatment guidelines to take with you. ILADS treats for longer and at higher doses. Maybe she won't know enough about it, to realize the controversy and will just give you what you need.

Here, in TX, some doctors won't even see you if you have a Lyme diagnosis. I consider myself lucky to have found 3 different non-Lyme doctors that are tolerant of it but I can't see them giving me antibiotics.

 

[BusynMember]

Thanks again, guys. Actually, Wisconsin has it's share of Lyme's disease, especially in my neck of the woods where there are a lot of deer ticks.

I have no idea if it's MS or Lymes...I just know it's one of them. I don't have the other mimickers--CFS and Fibromyalgia because I am not fatigued all the time and have no pain. Weird sensations, yes. Pain--headaches often in the morning, but nothing in all of my joints. Weird visual symptoms and heaviness in my left eyes, yeah, but more discomfort than pain. I lean toward thinking it's MS because I had a few acute episodes and they left ongoing problems, but it did get better. But we shall see if I can even get diagnosed.

My cognitive issues are very much in line with people who have MS. When I first went for help, I was a scared 21 year old kid who was dizzy and sick and had panic disorder so they wrote me off as just "all in your head." That won't happen this time. I'm far more self-assured and calm and able to express myself and I am not about to accept "it's all in your head" because I know it isn't.

Really, is it any wonder our kids have so much trouble get diagnosed??????