Any advice?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
TanyaT
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Any advice?

Post by TanyaT » Thu Sep 19, 2019 8:21 pm

Hi, Everyone.

I am new to this site, and I am looking for some help in ways to address my neurologist about my concerns. I have not been diagnosed with MS, but I have all of the symptoms and have had them for about 15 years. When they originally started they would come and go (typical relapsing-remitting), but now they are constant, and getting worse rapidly (secondary progressive). I have lesions in the white matter of my brain, but my neurologist has diagnosed me with severe chronic migraine (SCM) rather than MS. The problem I have with this diagnosis is that the only symptoms I have of severe chronic migraine are the ones that overlap with MS. Yet, I have all the symptoms of MS, including those that do NOT overlap with severe chronic migraine. I will admit that my lesions do look more like the lesions present in SCM rather than MS, but even a cursory search of medical literature (actual medical journals, not WebMD) is enough to tell me that atypical MS lesions CAN and often do mimic SCM lesions. But my neurologist won't even entertain the notion.

For reference, here are my main symptoms:
  • Constant tremors all through my body. I feel them worst in my arms, hands, and head. Sometimes my hands tremor so badly that I can't hold onto anything or type at all (especially on my phone). And my jaw will tremor like my teeth are chattering in the freezing cold, but it's 90 degrees out. I have also developed a slight tremor in my voice just recently.
  • Overwhelming fatigue. I could sleep 20 hours a day. Easily.
  • Mental fog. I struggle every day with memory, confusion, attention, focus... I feel like I'm losing my mind.
  • Language/Speech. I struggle with speech. I forget words (more often than most people and definitely more often than I used to). I also struggle with the flow of my speech. I am a teacher, and I used to be a great public speaker, but now I am just terrible. My speech has long pauses in it that I don't even notice. Sometimes I forget to finish sentences (again, I don't even notice half the time). I can still write fairly well, but spoken language is awful, which is terrifying for someone who makes a living at it.
  • Leg and arm weakness. I have trouble walking more than, I'd say, 50 yards without taking a rest or having some other form of assistance, and my arms and hands have become very weak. Things I used to be able to do with ease just a couple of years ago are now nearly impossible.
  • Bowel and bladder issues. In terms of my bladder, I have a lot of trouble with incontinence. I will often feel like I don't have to go at all, and then suddenly I have to go so badly that I will wet myself. With my bowels, I rarely have a "normal" bowel movement. It is always either constipation or diarrhea. There is no in-between.
  • Terrible muscle spasms. I get these mostly in my legs and lower back if I try to walk too far. The entire lower part of my body will just freeze up on me. I also will get muscle spasms in my arms and hands if I exert myself too much (for instance, this happened the other day when I was trying to wipe down the kitchen cupboards and it will often happen if I spend too long typing at my computer). The worst, though, is the "MS Hug"-- the horrible tightening around the chest. My PCP has sent me through every heart test available and my heart is fine, so we know that it is muscular, not heart related. But it is awful. Every time I get that banding around the chest, I just literally end up in the fetal position in tears. I also have horrible muscle spasms in my sleep. My family says watching me sleep is a little like watching an MMA fight.
  • Intolerance to heat. Any type of heat will instantly make my symptoms worse, especially the weakness. Exertion, showers, outdoor heat... doesn't matter. I will instantly get weak, faint, and nauseated.
  • Double vision and swollen, painful eyes. The double vision is actually worse than just double. It's more like quadruple or quintuple or sextuple most of the time. Sometimes I will see 4 or 5 images in just one eye, let alone both eyes together. I have a horrible time getting both eyes to align. My Ophthalmologist says that my one eye tries to drift outward. This is a new development. Just one year ago at my last visit, this was not happening. Obviously, my optic nerve is weakening. I am also experiencing a lot of eye swelling and pain.
  • Pins and needles, numbness, and/or a "shock" or "buzzing" sensation. I have strange sensations that run through my body all the time. But the pins and needles, numbness, shocks, or electric buzzing sensations are the most common. The other night, we had an electrical storm come through, and I swear I could feel the lightning in my body. I felt like Storm, from the X-Men. Yesterday, I felt like there was popcorn popping under my skin. But most of the time it is the "normal" MS sensations listed. I have one spot on my right thigh that has been numb for over 10 years.
These symptoms have gotten drastically worse over the last 2-3 years, and over the last year or so, it seems like they are getting worse daily. I have been under the treatment of my neurologist for the severe chronic migraine syndrome for 6 months, and I have seen absolutely no improvement... and actually have noticed a significant decline.

I have managed to get the neurologist (well, actually, his PA, since he doesn't even bother to see me anymore) to schedule a nerve conduction study for Monday, but I feel like it is just to placate me and that they are still not considering MS as a real possibility. Does anyone have any advice????

TanyaT
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Re: Any advice?

Post by TanyaT » Thu Sep 19, 2019 8:27 pm

There are other symptoms too... these are just the worst of them

TanyaT
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Re: Any advice?

Post by TanyaT » Thu Sep 19, 2019 9:01 pm

Oh... I forgot to mention the extreme dizziness/vertigo with nausea or vomiting as one of my symptoms. This is not a constant symptom. Although I always feel "off-balance" and "shaky on my feet," I don't always have actual dizziness or vertigo. It's frequent... I'd say at least 3 days per week... but not constant like the other symptoms.

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NHE
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Re: Any advice?

Post by NHE » Fri Sep 20, 2019 12:35 am

Welcome to ThisIsMS. An MS diagnosis is typically a process of elimination. What other conditions have you been tested for, e.g., B12 deficiency, etc?

Why is your neuro excluding MS as a possible diagnosis?

The diagnostic criteria for MS is known as the McDonald Criteria. Has this been excluded?
https://multiplesclerosisnewstoday.com/ ... uidelines/
https://www.nationalmssociety.org/Sympt ... gnosing-MS
https://multiplesclerosis.net/diagnosis ... -criteria/

Have you had any treatments for chronic migraines? Were they helpful? For example, low dose propofol has been reported to be helpful. https://www.ncbi.nlm.nih.gov/pubmed/27454834

Some people with migraines also find the Cefaly device to be helpful. https://www.cefaly.us/

Have you tried any diet/nutrient approaches? For example, magnesium can be helpful for muscle spasms.

TanyaT
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Re: Any advice?

Post by TanyaT » Fri Sep 20, 2019 12:50 am

I have mild Type II diabetes, but it is under control with medication. I have sleep apnea, but I use a CPAP machine for that. I do have trouble with vitamin D deficiency (another indicator of MS). I take vitamin D supplements for that. I have mild hypothyroidism, but that is under control with medication. All of these conditions, I should point out, developed in the last few years---long after the onset of the symptoms listed in the original post.

I am in treatment for migraines and have been for over six months. The treatments have done nothing for me. I have only gotten worse. I am on 3 different medications for the migraines: Topirimate (150 mg 2x daily), Naproxen (as needed up to 2 x daily), and Sumatriptan (as needed up to 3 x weekly). I have been strictly told by my neurologist that he does not want me taking ANYTHING for the migraines that he does not prescribe.

He ruled out MS solely based on the appearance of the lesions on the MRI. He said that they do not look like MS lesions.

TanyaT
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Re: Any advice?

Post by TanyaT » Fri Sep 20, 2019 12:58 am

I have not had any additional testing for MS because my neurologist refuses to do any. I had to pull teeth just to get the nerve conduction study scheduled for this coming Monday.

He literally diagnosed me with chronic migraine before even talking to me. On my first appointment, after finding the lesions on my MRI, he walked into the exam room with my diagnosis in hand (literally... he had a stack of papers about my diagnosis in his hand). When I tried to tell him about my symptoms and questioned him about MS, he completely dismissed the idea and told me that my lesions looked nothing like MS lesions and refused to listen to my symptoms.

On subsequent visits, anytime I tried to bring up symptoms that didn't fit with a migraine diagnosis, he immediately dismissed them as depression or dehydration or something else. Despite the fact that all of them were pretty classic MS symptoms, he continues to refuse to even test for MS.

I would be perfectly happy to find out that it's NOT MS, but I would really like the proper tests run first. You know?

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NHE
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Re: Any advice?

Post by NHE » Fri Sep 20, 2019 1:49 am

TanyaT wrote:
Fri Sep 20, 2019 12:58 am
I have not had any additional testing for MS because my neurologist refuses to do any. I had to pull teeth just to get the nerve conduction study scheduled for this coming Monday.
If I remember correctly, nerve conduction studies are usually used to diagnose problems with the peripheral nervous system, e.g., Guillain-Barré syndrome. MS is a central nervous system disease.
TanyaT wrote:On subsequent visits, anytime I tried to bring up symptoms that didn't fit with a migraine diagnosis, he immediately dismissed them as depression or dehydration or something else. Despite the fact that all of them were pretty classic MS symptoms, he continues to refuse to even test for MS.
Most health insurance will cover second opinions. Have you looked into this option?
TanyaT wrote:I would be perfectly happy to find out that it's NOT MS, but I would really like the proper tests run first. You know?
Yes, for MS there are several hugely expensive medications with a plethora of side effects, some fairly toxic, and not really effective against long-term progression.

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Re: Any advice?

Post by ElliotB » Fri Sep 20, 2019 8:10 am

Sorry to hear you are not feeling well. Any advice? Yes, find another doctor! And since you suspect MS, see a MS specialist.

"He ruled out MS solely based on the appearance of the lesions on the MRI. He said that they do not look like MS lesions."

My first neurologist (not a MS specialist) could not even identify any lesions on my MRI (he assured me I did not have MS) which were obvious to the specialist who read the same MRI two weeks later and ultimately made the correct diagnosis.

A few other suggestions:

If you haven't already done so, have some basic blood work done to see if there are any obvious deficiencies. Also make sure to have your vitamin D and magnesium levels checked.

Go on a gluten free diet for at least 3-4 months.

Avoid sugar in any form.

Reduce the foods in your diet that are high in saturated fats.

Avoid coffee or anything with caffeine, alcohol and smoking.

Get plenty of sleep every night and if you need to take a short nap during the day.

Exercise daily (walking is fine) for 30-60 minutes or more.

Hope you are feeling better soon!

TanyaT
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Re: Any advice?

Post by TanyaT » Fri Sep 20, 2019 11:10 am

ElliotB,

Thank you for your advice and well wishes.

I do have a history of Vitamin D deficiency, which I know new studies are showing is a risk factor for developing MS. I am trying to get a referral to an MS specialist. I am in a bit of a bind, however. I am currently in-between PCPs. For the last 10 years I have been a graduate student and my PCP has been the doctor at the University's Health Services, but since I am no longer in classes, he cannot see me any longer. But, the doctor's in this area will not accept my insurance. So, I have to wait until January, when I can change my insurance, to get a new PCP. And my neurologist won't refer me... because he thinks he has already properly diagnosed me. However, I have a call into my old PCP. He is a great doctor and might give me a referral to the MS specialist about an hour away without seeing me. He is incredibly supportive of me, and he also feels that the neurologist might have jumped to conclusions.

I can work on the dietary adjustments, as much as possible (we are on a limited budget, so don't have money for a lot of specialty foods). Exercise is a bigger problem. I can't walk more than 5 - 10 minutes without my legs seizing up on me.

TanyaT
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Re: Any advice?

Post by TanyaT » Fri Sep 20, 2019 11:16 am

NHE,

Thank you, btw, for all those helpful links and your suggestions. That will help me be even more prepared when I approach the neurologist again.

I am so frustrated with this situation. I am working on a second opinion, as I mentioned in my other comment. It's just difficult right now. I am really hoping I can get a referral from my old PCP. However, I am going to question them on Monday about the nerve conduction study. If it is not a test generally used in the diagnosis of MS, and MS was my SPECIFIC concern the last time I spoke with them, then why are they even doing it?

TanyaT
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Re: Any advice?

Post by TanyaT » Fri Sep 20, 2019 6:26 pm

Thanks, Jimmy. I'm always open to help and resources. It's like I told my son the other day (in the midst of a crying spell over the pain), I either want to feel better or I want to know what it is so I understand why I don't.

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NHE
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Re: Any advice?

Post by NHE » Fri Sep 20, 2019 10:02 pm

TanyaT wrote:
Fri Sep 20, 2019 11:16 am
Thank you, btw, for all those helpful links and your suggestions. That will help me be even more prepared when I approach the neurologist again.
Have you had you B12 levels checked? If so, what were the results? B12 should be around 500-1000 pg/mL. Note that in addition to B12, it's also important to check red blood cell folate, homocysteine and methylmalonic acid.

B12 deficiency is one of the major mimics of MS symptoms. Here's a link to a discussion topic about B12. viewtopic.php?f=27&t=24857

I also highly recommend the book 'Could It Be B12? An Epidemic of Misdiagnoses' by Sally Pacholok and Jeffrey Stuart. https://www.amazon.com/Could-Be-B12-Epi ... 1884995691

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Re: Any advice?

Post by ElliotB » Sat Sep 21, 2019 6:31 am

" I can't walk more than 5 - 10 minutes without my legs seizing up on me."

Now is the time to really concentrate on this issue before it gets worse.


I have some mobility issues and recently started using passive motorized exercise machines and am seeing some improvement. Here is a link to a thread I started on this topic:
viewtopic.php?f=1&t=31065&p=258236&hili ... se#p258236

These types of machines are excellent because they do all the work for you abd yet they do a great job of working your muscles.

Are your ankles/feet swollen and/or stiff? If not or just minor, I would suggest this machine if you were only going to get one:

https://www.amazon.com/Sunny-Health-Fit ... 01MRHWD8G/

It has a pretty large range of motion and does a great job on the feet/ankle area and a good job on the knee and thighs and will work/stretch many of your leg muscles up and down your entire leg.


BUT keep in mind that there are many, many effective ways of exercising without any special equipment whatsoever from a seated position as well as lying down.


Lots of helpful videos are available on YouTUBE.

"the doctor's in this area will not accept my insurance"

Do you have a car? Or a relative or friend that can drive you? I would not wait until January.


ALSO, consider these supplement to help improve the issues with your muscles, L-Arginine HCL and Ribose. Both are available in pharmaceutical grade powders and are relatively inexpensive.

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Re: Any advice?

Post by Scott1 » Mon Sep 23, 2019 10:09 pm

Hi,

I'm a bit late joining this conversation. Do you know what sort of MRI you had? Was it just the brain or was it the spine as well? Did they inject you with a contrast when they they did the MRI?

It does sound like you need to consult a completely unrelated neurologist to the one you are relying on.

Regards,

TanyaT
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Re: Any advice?

Post by TanyaT » Fri Sep 27, 2019 8:40 pm

Hi, all... sorry I haven't responded in a few days. I have been having some very bad days recently, sleeping a lot.

Right now, I don't have any access to my medical records because I don't have a primary care physician. I mean, I'm sure I could get access, but I don't have them on hand. I know that the last time I saw my old PCP, he did run tests for vitamin deficiencies, including deficiencies in the B vitamins. The only one that came up deficient was D3. I can't remember the exact number, but I do remember that it was REALLY low. Both my PCP and my neurologist commented on how low it was. However, I have been on a D3 supplementary regiment since then, and my later blood work has been fine.

As for exercising, I'd love to get a machine like that, but I can't afford it. I do suffer from a lot of edema in my legs/ankles. It's not too bad, if I can sit in a reclined position most of the time, but if I have to sit in an upright position or stand for any length of time, my legs swell terribly (all the way up to my hips). I'll have to look for those YouTube videos.

As far as the question about getting a doctor... I do have a car, but it is not reliable enough to drive more than just around town. It breaks down constantly. No, I don't have any family or friends in the area. We are, honestly, in a very isolated situation. We are extremely poor, with a lot of big bills, and my ability to work is constantly a question. We have no family. They have all passed away. And none of our friends live closer than 1000 miles away. So, I really don't have much of a choice but to wait until I can change my insurance.

I did get my old PCP to refer me to the closest MS specialist for a second opinion. I'll have to rent a car to get there, but I'll do what I have to in order to get that second opinion. Once we figure out what's going on, we'll go from there, I guess.

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