Plethora of symptoms

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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issapi23
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Plethora of symptoms

Post by issapi23 » Wed Jun 24, 2020 2:48 pm

Hi - I am a 31 yo male from NYC, for the last couple of years I have been dealing with a plethora of debilitating symptoms from what has been considered an atypical presentation of TMJ or Trigeminal Neuralgia, to constant deep aching pains in both legs and arms. I am currently in a lot of pain, can't sleep, and constant dizziness. I have had two MRIs almost a year apart, both have shown the same lesions, they seem to be the same size, and in the same location, the first MRI report says that the lesions are atypical for MS and could be NMO but NMO antibody tests have come back negative twice, the second report even says that the lesions are of "clinical insignificance".

I have a history of low vitamin D and high vitamin b12 and b6 - I know b6 can be a b********- but my levels seem to be normal now. I am having a thoracic and cervical MRI in 10 days and an MRV and MRA to check for the arteries and veins in my brains as a neurosurgeon that saw my second MRI said that both my trigeminal nerves are compressed - Trigeminal nerve compression in one side is almost unheard of in someone my age, let alone in both sides.

So this is why I keep thinking that it may be MS. As I am typing this, it feels as I am losing control of both arms and walking has become really painful. So, at this point, I am 80% convinced that it is MS, so anyone in the NYC area with MS, or similar symptoms/history that could share their feedback about help obtaining a diagnosis? I like my current neurologist, as she specializes in MS and demyelinating diseases, but I would like to keep my options open. THANK YOU!
Last edited by issapi23 on Thu Jul 02, 2020 3:47 pm, edited 2 times in total.

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Scott1
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Re: Plethora of symptoms

Post by Scott1 » Wed Jun 24, 2020 4:58 pm

Hi,

I'm not in the NYC area so can't offer local advice. The MRI of your cervical spine should be more telling than of your brain.
It's not possible from your message to tell what the lesions you have mean but compression of the trigeminal nerve is definitely painful.
How is your vision? Does it seems clear, particularly in low light? (e.g. does lack of illumination make words you can normally read become blurry)
A number of things could be happening so taking advice from the internet isn't a great idea for diagnosis.
If I were you and felt the symptoms were becoming more difficult to deal with, I'd contact your neurologist, let her know and see if the MRI can be brought forward. I'm sure you do have something going on but it's potentially misleading if I say what I think.
To have to wait 10 days for a scan and then longer for a diagnosis isn't ideal. All this Covid-19 stuff is not an ideal backdrop to work with.
You might need to complain to push yourself to the front of the queue.

Regards,

issapi23
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Re: Plethora of symptoms

Post by issapi23 » Wed Jun 24, 2020 6:47 pm

Hi Scott! - Thank you for your response. When it comes to my lesions, this is what both MRI reports say:

First: "Symmetric patchy foci of signal alteration predominating in the parietal subcortical and deep white matter. Findings are nonspecific and may be sequelae of migraines, prior infection or inflammation, demyelination or vasculopathy. Findings are not typical for multiple sclerosis but can be seen with other demyelinating processes such as NMO spectrum disorder. Correlation advised for history of hypertension or other vascular risk factors"

Second: "There is T2 and FLAIR hyperintense signal abnormality in the posterior periventricular white matter which may represent terminal zones of myelination, a clinically insignificant finding. There is no abnormally restricted diffusion"

Based on my own research and my surgeon friend's comments, both areas described are virtually the same but described a bit differently in both reports.

The compression of the trigeminal nerve is indeed painful, and the symptoms sometimes feel very difficult to explain. My vision has always been relatively bad, so this has been the most difficult part to fully track and compare, but I don't think much has changed tbh.

I am planning to contact the radiology department of my hospital tomorrow morning and request an earlier date. I think I can get an earlier date, just need to sacrifice a bit of my workday, but as I am working from home, I think I can manage it.

I will share my results here as soon as they become available to me. I think it is MS but hey, I need a formal diagnosis.
Last edited by issapi23 on Thu Jun 25, 2020 3:20 pm, edited 1 time in total.

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Scott1
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Re: Plethora of symptoms

Post by Scott1 » Wed Jun 24, 2020 7:08 pm

Hi,
The lesions don't sound something fresh to me. The brain stem and upper spinal cord will be more informative.
Nonetheless, I do think you should push for earlier appointments.
I won't list how many things can look like MS. It is a lot. The key thing to focus on is that your symptoms are real and need to be treated seriously.

Regards,

issapi23
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Re: Plethora of symptoms

Post by issapi23 » Thu Jul 02, 2020 2:55 pm

Hi - I am back. I just received my lumbar and cervical spine MRI results and both came back normal, however, I can't walk without extreme pain in both legs, my knees are aching and my back is figuratively on fire. Last Sunday I went out with friends and couldn't be out there for longer than an hour because my legs started to fail me, I was confused and overheated, a total mess! it feels as if I have a heat sensitivity, which is extremely common in MS. So, I wonder, if it is possible to have MS with atypical brain lesions that could be of clinical insignificance and no lesions in the spinal cord? My Dr would like me to get an MRA and an MRV because a neurosurgeon said that both trigeminal nerves are compressed, which would be extremely unusual for someone my age, but we would like to rule that out as well :S

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Scott1
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Re: Plethora of symptoms

Post by Scott1 » Thu Jul 02, 2020 11:59 pm

Hi,

Firstly, I think you're seeing the right person. The lack of damage that is typical of MS almost certainly rules out that as the reason you have your symptoms. It doesn't mean you haven't got a neurological problem but it doesn't guarantee that your symptoms are caused by nerve damage. It could be a compression issue that can be dealt with.
Do both the MRA and the MRV. It going to be a process of elimination to sort out the correct cause.
Regards

issapi23
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Re: Plethora of symptoms

Post by issapi23 » Sat Jul 18, 2020 1:02 pm

So, my doctor decided to stop further testing for M.S, however, I want to get a lumbar puncture and evoked potential to further rule out M.S. My symptoms have been almost specific for MS, I have brain lesions and all other tests have come back negative. I am having a skin biopsy and another EMG to rule out small and large fiber neuropathies, but if those come back negative, I am thinking of contacting another doctor. I am not taking any medication at the moment so just "dealing" with the pain, but I don't know for how long I will be able to keep up.

Another thing is that all of my MRIs have been performed without contrast, so we may have been missing potential lessions/issues.

Any advice from those that have been in similar situations?

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Scott1
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Re: Plethora of symptoms

Post by Scott1 » Sat Jul 18, 2020 4:27 pm

Hi,

Your original MRI report raised the possibility of NMO spectrum disorder. Given what you have already described, I doubt that an unequivocal MS diagnosis is possible. Has the NMO possibility been explored?
The report also suggested that the doctors look for blood pressure related causes? Has that been explored?
You mention that you are thinking of changing doctors. Do you mean change your neurologist or change your GP? If you are seeing just a GP, then ask for a specialist. If you are dealing with a neurologist then ask about the NMO and blood pressure comments.
Regards,

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Re: Plethora of symptoms

Post by NHE » Sat Jul 18, 2020 6:15 pm

issapi23 wrote:
Sat Jul 18, 2020 1:02 pm
Another thing is that all of my MRIs have been performed without contrast, so we may have been missing potential lesions/issues.
The gadolinium contrast just differentiates new lesions that are sites of active inflammation from old lesions. All lesions should be visible even without contrast. I typically find that the FLAIR series of MRI images is the easiest to spot lesions. If you have disks of your MRIs, then these series would be good to review. What do the radiologist reports have to say about your MRIs?

issapi23
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Re: Plethora of symptoms

Post by issapi23 » Sat Jul 18, 2020 9:36 pm

Hi Scott,

"Has the NMO possibility been explored?" I have tested twice since last year for an NMO specific antibody and it has come back negative. Plus, the lack of lesions on my cervical and thoracic regions makes it even less possible based on what I've read and been told about NMO.

"Do you mean change your neurologist or change your GP? If you are seeing just a GP, then ask for a specialist" She is a Neurologist especialized in M.S at the Weil Cornell M.S center, so she is supposed to be really good.

"The report also suggested that the doctors look for blood pressure related causes? " Now that you mention this, I now remember that the neugologist working with me to determine if I have small fiber neuropathy instead of M.S mentioned that a so called "Function A" test came back elevated and asked me if any relative of mine have had a premature heart attack or heart conditions. I have tried to find that specific test on my chart, but can't seem to find it, so I asked this Dr. to send me its pertinent information to learn more about it.


What do the radiologist reports have to say about your MRIs?" My brain MRI came back with two visible bilateral lesions atypical for MS based on the radiologist report, and my cervical and thoracic MRIs came back without lessions, but with some bulges and even a slide deviation of my spinal cord.

All this has been a nightmare, my fear is to actually have MS and wait years to find out I have and treat it.
"

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NHE
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Re: Plethora of symptoms

Post by NHE » Sat Jul 18, 2020 10:48 pm

There are lots of MS cases presented on https://radiopaedia.org/. For example, compare the Axial T2 versus Axial FLAIR on this image set. https://radiopaedia.org/cases/multiple- ... 40?lang=us

More MS cases at https://radiopaedia.org/search?lang=us& ... cope=cases

issapi23
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Re: Plethora of symptoms

Post by issapi23 » Thu Aug 20, 2020 5:10 pm

Well, the MS doctor I was seeing basically dumped me and sent me to see a general neurologist, which I did, I got a few more tests and a skin biopsy, both my vitamin B6 AND B12 levels came back high and the skin biopsy was negative for Small fiber neuropathy. However, I am still dealing with the same symptoms, I decided that I will go overseas for diagnosis and treatment, I am done with the American "health system".

I am almost certain that I do have MS or a degenerative disease and I won't allow myself to die or end up disabled without at least knowing what could be affecting me.

I think my best option would be to request a lumbar puncture.

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Scott1
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Re: Plethora of symptoms

Post by Scott1 » Thu Aug 20, 2020 7:37 pm

Hi,

Well, that's frustrating. Are you on any medications for any reason at all?

Regards,

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NHE
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Re: Plethora of symptoms

Post by NHE » Fri Aug 21, 2020 12:35 am

issapi23 wrote:
Thu Aug 20, 2020 5:10 pm
Well, the MS doctor I was seeing basically dumped me and sent me to see a general neurologist, which I did, I got a few more tests and a skin biopsy, both my vitamin B6 AND B12 levels came back high and the skin biopsy was negative for Small fiber neuropathy.
What was your B6 level and how does it compare to this test range from LabCorp?

Male: 5.3−46.7 μg/L

https://www.labcorp.com/tests/004655/vi ... sub-plasma

Are you taking a supplement with B6 in it?

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