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Posted 11/21/2017 6:33 AM (GMT 0)
So over a year ago I was told by the MRI report and an MRI that I have MS, deciding that it was something I would rather not have I searched for and found another neurologist who said that the lesions were migraine related. I truly now believe that he based it on my history of chronic migraines and the fact that I take a preventative as well as a medication for when they happen.

This October I had my first real attack. It amplified my chronic pain and gave me only what I can describe as brain pain, not at all a headache in any sense that I have ever experienced. The chronic pain went to a 10 on the pain scale while the brain pain (something completely new) went way past that. I had thought that from my chronic pain that I was just done with walking. It took 3 days to hit it's worse like that for 2 then just completely back to normal on day 6. Just from horrible nothing worse to fine. This was so traumatic and painful I have not been the same since I am partially broken.

Then in November it started up again 31 days later. Knowing that I would not survive it a second time I went to the hospital and was admitted. I told them that it might be MS. So I was given ordered high doses of steroids, it broke on my 3rd day there. I had been utterly terrified of knowing how bad it was going to get but it was stopped before it hit it's worse. I got out on day 3 which was the 10th of this month. I have been searching for exactly what it was and I think it meets the definition of an attack I read at the National MS Society of either new or worsening of existing symptoms I had both.

That RRMS says that it has to be 30 days apart and last over 24 hours. It was 31 days and lasts 5 days untreated, 3 treated. So this is what my attacks are like I know some will have it worse and I am not trying to say no one does. It is these are beyond horrible I am going to be started on Betaseron but from what I understand this will not stop them from happening just give me chances for them not happening and not being as bad. That is about the only thing that has me going right now are these chances.

I am scared that it is going to happen again in December around the 7th. And I am angry that it is happening and that even after the first one no health care professional said hey maybe that is actually MS after all. I came to the conclusion that the laundry list of things wrong with me are probably contributed to my MS. And that now the awful leg pain I have is more than likely a new lesion on my spine in my back.

As far as I am aware they were only in my brain before which I get a new MRI there as well so 2 looking for newer lesions. I am pretty positive that the brain pain I went through for those 5, and especially the 2 days did something permanent to my brain. Also at some point in the last two years I developed horrible neurological pain. I was taking Neurotin they had doubled my original doses and now have me on Lyrica but it is still there. Does anyone have this? Have you tried Lamictal or anything else?



I have made some paragraphs in your post to make it easier to read.

Post Edited By Moderator (straydog) : 11/21/2017 9:03:41 AM (GMT-7)

Posted 11/21/2017 3:19 PM (GMT 0)
Mark R D,

Lamictal is an anticonvulsant, used for seizures, depression and Bipolar. In the case of MS the only thing Lamictal will help with is if the person is being treated for seizures, depression, and/or Bipolar. You should check with your prescribing Dr. about the symptoms you are experiencing to make sure the medication isn't the cause of your symptoms.

Your description of your head pain/headache and the monthly timing of getting worse/better really doesn't fit for exacerbations (relapse, attack, flare-up) in MS. You head pain is too consistent in timing....every month, lasting 2 to 5 days then 31 days and the same cycle. That's just not an exacerbation of Multiple Sclerosis.

You would need a spine MRI to know if you have MS or anything going on with your spine. Leg pain can be due to many different causes including medication.

Post Edited (Snoopy) : 11/21/2017 8:46:15 AM (GMT-7)

Posted 11/21/2017 4:12 PM (GMT 0)
You may want to consider going online & looking up your local MS society. They should have a list of neurologists that treat MS & those drs will have a lot of knowledge about MS. You can obtain copies of your previous MRI's for a new dr to review. At least by doing this you can get a diagnosis of what you may or may not have. Trying to look up things on the internet is too frustrating because ultimately, you need a good dr to make a diagnosis.

Take care.
Posted 11/21/2017 10:34 PM (GMT 0)
I kind of have a diagnosis that I really never accepted. The radiologist put MS on the report, the first neurologist was telling me a while before the MRI that he thought I had MS based on exams alone. I had thought and still have on the table that the leg pain could all be lower back. I talked to the first neurologist since the first thing happened I don't know if I am not explaining things well but he thinks it was an attack and he told me on the phone today that the brain pain I felt was probably called a secondary headache caused by the MS. And that it was a neurological attack. It is like this my left shoulder has chronic pain after 4 unsuccessful surgeries left me without a deltoid. Now my back from the neck down also has chronic pain. But when this thing happens it only amplifies the pain along my spine. I really think that the steroids did something for me in curtailing this thing.

This neurologist who diagnosed me has a website says he uses the Kurtzke score, to evaluate and has studied at the University of British Columbia under someone called Dr. Donald Paty? I don't know maybe I am not giving him enough credit. His specialty is MS as well as being an MD. His site says that he has published 38 articles on MS and a section in textbook on MS. I am having another MRI of the brain on the 30th and a lumbar one early next month. I can link the page but it is just him patting himself on the back.
Posted 11/21/2017 11:08 PM (GMT 0)
I am sorry for that post. I am not arguing for this being what is wrong with me it just seems the most likely at this point. I did not accept it in April 2016 so people who have MS doubting that this is is a good thing. I really don't like the neurologist though maybe because he gave me that as a diagnosis?
Posted 11/22/2017 12:08 AM (GMT 0)

Mark R D said...
I kind of have a diagnosis that I really never accepted. The radiologist put MS on the report, the first neurologist was telling me a while before the MRI that he thought I had MS based on exams alone.

A Radiologist cannot diagnose MS and the MRI report is not a diagnosis. The impression section of a MRI report will list possible causes for MRI findings. It's up to a Neurologist to correlate MRI findings and other testing to determine what might be causing a person's symptoms. Part of the diagnostic criteria requires all other possible causes be ruled out. This disease cannot be ruled in/out based on symptoms alone.

To determine if a patient is having an exacerbation (relapse, attack, flare-up) of MS the Neurologist would need to exam you and will usually do MRIs. A phone call isn't how a Neurologist's determines an exacerbation.
Posted 11/22/2017 2:01 AM (GMT 0)
No sorry I meant I have talked to him on the phone several times. He (my neurologist) has done an exam since I was in the hospital. He is also the one who did exams on me in 2016 and told me that in conjunction with exams and the two MRI's of my brain that he determined that I have MS. He first told before I had the second MRI which was with contrast first wasn't that he thought it was MS. He confirmed it with the second MRI. But it was written on there that in a clinical setting it would satisfy both time and space fo MS. But no I was not saying the radiologist diagnosed me. The neurologist is an odd one, he answers his own phone and likes to schedule appointments himself. So talking to him in between appointments is real easy to do. I will wait for this next MRI and see what it says. After that neurological attack I would really be surprised if there was not something new from that trauma.

Interesting read on neurological problems and MS:

http://www.mayoclinicproceedings.org/article/S0025-6196(16)00073-2/fulltext#sec4.3

It is rather long winded just skip ahead to the MS-Related Pain section last paragraph in it talks about it.

"Central neuropathic pain has a lifetime prevalence of 12% to 28% in patients with MS, often occurring more than 1 year after the development of neurologic symptoms in the region of pain.23, 65 Given the multifocality of demyelinating lesions within the CNS, it is not surprising that central neuropathic pain can occur in more than one location.23, 30 Pain occurs in the neurologically affected body region and specifically in areas with evidence of spinothalamic tract sensory loss.58, 64 Central pain is more common in progressive forms of MS than in the relapsing- remitting form, in patients who are older, in those who have had longer duration of disease, and in patients with higher levels of disability.23, 58, 62, 65"

Not saying that is exactly me or that I would by any mean be progressive. Just that nerve pain and MS are linked is all.
Posted 11/22/2017 3:08 PM (GMT 0)
I don't think well anymore so I do apologize about everything thus far. See if this makes a difference. I started seeing a neurologist for back issues. Something about my exams, maybe the horrible ataxia, I can not take even one step heel to toe, the way I shake, or my many other problems. I don't know something makes him suspect MS so he orders a brain MRI. Comes back with a report saying something about time and space and MS. The neurologist uses all this I assume to make the decission that I have MS. I decide that I would rather not have that and I still would not, so I stop seeing him. That was April 2016. Now October 8th, 9th, 10th, 11th and 12th some sort of neurological attack happens during this my brain hurts (something new) and my chronic pain along my back worsens (the worsening of an existing symptom). The lower back pain makes me think that I am never going to walk again, thinking of what the neurologist had told me about walking on the very last visit I had with him and out of desperation I call him. The thing is completely over on the 13th but I now have an appointment for the 1st of November. After that November 8th it starts again I call the neurologist who tells me to go to the ER and tell them I have MS and am having an attack. This one lasts in the hospital the 8th, 9th and the 10th. It is broken on the 10th. I had been given IV steroids. Now between phone calls and another appointment on the 15th he decides about the RRMS, not me. There has been quite a few phone calls he answers his own phone. But as I have a hard time telling when and if certain thing occured I can't tell you when he decided this. But somewhere it is decided that for me it means a neurological disease causes neurological attacks. So that is why I say I am just now accepting this.

I have all these problems which could be all related or independent of each other:

Nerve Pain, Neuropathy
Dysaesthetic extremity pain
Allodynia
Migraines
Chronic Pain, Muscular Skelton Pain
Ataxia
Numbness, Loss of Sensation
Twitches, Shakes, Jerks, Involuntary Movements, Tonic Spasms
Memory Loss, Loss for/of Common Words
Depression, Bi-Polar, Personality Disorder, PTSD, Anxiety
Fatigued, Tired
Worsening Vision
Hearing Loss
Bladder Problems
Posted 11/23/2017 4:27 AM (GMT 0)
Hi Mark,

When will you be seeing your neurologist again? Will you be starting or have you started a disease modifying medication? Are you currently being treated for your mental health issues?

I hope you’re feeling better sooon.
Posted 11/23/2017 2:50 PM (GMT 0)
Yes I am being treated for the PTSD and other psychological issues. Right now the only thing that I have been on is steroids. I was on them from the 8th of this month up until the 21st, when I stopped them 2 days early. I was having mild side effects. I see the neurologist on the 29th to start Betaseron. Then the next day is a new brain MRI. That will be gone over on the 6th. But I think that if the cycle holds true I might be back in the hospital around the 7th.

I am not sure why but I think part of my communication problem is the time of day. It seems that later in the day really more so at night when I usually post I have a harder time thinking. And it frustrates me.
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