In purgatory while waiting for an MRI

[fullonmonet]

At the pharmacy after my neurology appointment. Neurologist says he has done everything on his end and that the only thing left would be to do a skin biopsy. He said to continue to get gabapentin he has to put in a diagnosis for me so he put “headaches.” He even said he had a young lady have headaches and it turned out to be hormonal (even though I told him repeatedly I don’t get headaches and I get nerve pain constantly). He really thinks that my pain is from the tumor. He said to follow up with him in 3-4 months (basically follow up with him when I get my prolactin retested in May).

I do not think I’m going to be coming back to this hospital because I am moving in mid-March so I will most likely be with a new neurologist and endocrinologist. But since it’s in the military all the notes and labs can be shared. I feel discouraged but perhaps I do need to get my tumor taken care of so it won’t be a confounding variable or maybe he is correct and it is the tumor after all.

[McJedi]

I had my Nerve Conduction study and it hurt lol. It hurt but also felt weird to see your limbs jerk without your control. The neurologist (not my main neurologist) who did the test said my nerves were not damaged. So it seems my concerns are related to the central nervous system and not the peripheral.

I feel for you. EMG's are a strange uncomfortable feeling and... well... they just suck. I have had two now with two different neurologists, both showed "normal". After each one, the neurologists commented that the results indicated that the problem is "further up the chain" as one put it, indicating that it was a CNS problem.

My labs also came back and they were all negative or normal. I don't have lyme disease, I don't have lupus, I don't have a b12 deficiency, and I don't have arthritis.

Welcome to the world of "we can tell you what you don't have, not what you do have." The problem becomes if your neurologist gives up prior to finding an answer.

I need to schedule a follow up appointment with my main neurologist. It seems I am running out of possible causes and running out of tests. The only thing left I can think of is spinal tap and spine MRI. So it seems we are narrowed down to MS, pituitary tumor causing weird symptoms not characteristic of a pituitary tumor, or something else.

If your neurologist doesn't do an MRI of the spine and/or a lumbar puncture, push them on it. If they still refuse, it is time to look for another neurologist. That is the exact boat I am in and I am now waiting to see a different neurologist through another hospital system.

I wish you luck and hope that your neurologist will continue to push forward looking for an explanation instead of the "I don't know" shoulder shrug. Most of all, I wish you strength to always press forward, advocating for your health.

[KoKo]

I had my Nerve Conduction study and it hurt lol. It hurt but also felt weird to see your limbs jerk without your control. The neurologist (not my main neurologist) who did the test said my nerves were not damaged. So it seems my concerns are related to the central nervous system and not the peripheral.

My labs also came back and they were all negative or normal. I don't have lyme disease, I don't have lupus, I don't have a b12 deficiency, and I don't have arthritis.

I need to schedule a follow up appointment with my main neurologist. It seems I am running out of possible causes and running out of tests. The only thing left I can think of is spinal tap and spine MRI. So it seems we are narrowed down to MS, pituitary tumor causing weird symptoms not characteristic of a pituitary tumor, or something else.

Thank you for the update. Glad you made it through your EMG.

Looks like your rule-out tests are moving right along.

It will be interesting to see what your neuro's next move is.

The journey continues....

Take Care

[Mamabug]

You don't have lyme disease, you don't have lupus, you don't have a b12 deficiency, and you don't have arthritis. Hopefully, ruling out all of these possibilities means that you are getting closer to an accurate dx.

It's hard to wait. Once you have a dx, you'll be able to educate yourself about treatment and make some decisions about what you want to do.

[fullonmonet]

I had my Nerve Conduction study and it hurt lol. It hurt but also felt weird to see your limbs jerk without your control. The neurologist (not my main neurologist) who did the test said my nerves were not damaged. So it seems my concerns are related to the central nervous system and not the peripheral.

My labs also came back and they were all negative or normal. I don't have lyme disease, I don't have lupus, I don't have a b12 deficiency, and I don't have arthritis.

I need to schedule a follow up appointment with my main neurologist. It seems I am running out of possible causes and running out of tests. The only thing left I can think of is spinal tap and spine MRI. So it seems we are narrowed down to MS, pituitary tumor causing weird symptoms not characteristic of a pituitary tumor, or something else.

[KoKo]

Yeah he seemed apologetic that he didn't show me my MRI and explain it more.

I do not think my exam showed any deficits since afterward he said "everything is fine."

Good to know!

Since it seems I do not have the characteristic falling and terrible balance that people with MS have it makes me feel less and less likely that what I am dealing with is MS.

Well, the truth is that persons with MS don't always have the same symptoms, especially early on. It all depends on where the lesion damage is located.

Although last night I felt like I had an MS hug. It felt like an electric shock almost rubber band snapping on both sides of my lower ribs and only last a few seconds. Has anyone else experienced that?

I don't have that particular symptom, but others may have experienced it.

I hope that you are documenting every symptom, and how often they happen. Take it with you to your next appointment. My neuro told me that it was very helpful to him, when I gave him my list of symptoms and their frequency, and also if they appeared at certain times (when fatigued, too warm, etc).

[fullonmonet]

Koko,


Yeah he seemed apologetic that he didn't show me my MRI and explain it more.

I do not think my exam showed any deficits since afterward he said "everything is fine."

Since it seems I do not have the characteristic falling and terrible balance that people with MS have it makes me feel less and less likely that what I am dealing with is MS. Although last night I felt like I had an MS hug. It felt like an electric shock almost rubber band snapping on both sides of my lower ribs and only last a few seconds. Has anyone else experienced that?

[KoKo]

Hello KoKo,

Yeah it seems to be that he is still in the diagnosing phase but from the tone of the meeting and how he left things before mentioning the other tests it seemed like an end of the road, contact your endocrinologist type of meeting.

I have the EMG on the 11th so I am looking forward to get more results but some people said its painful so kind of worried about that lol.

The neurologist just called me to check on me about my heart rate and I told him that its down and then I mentioned the white matter signals. He said they can come from vasculitis and lyme disease and migraines. He said I definitely dont have vasculities and since I dont have migraines the only thing left to look at is lyme. He said the signals dont look like MS. I asked about the number and he at first said 5-6 and then he said wait im looking at your MRI now and its actually 12. He then said its common for people to have and to not to worry. I mentioned how my old MRI report said a few white matter signals and this new report says multiple and he chalked it up to just the reporting system. I don't know 12 does not seem like a few to me and this makes me wish even more that I had my MRI from El Paso.

I think the reason I am discouraged because I was expecting a spine MRI to be next to see if there are any lesions there but I guess I will have to wait in the meantime.

I'm very glad that you talked to your neuro!

By you asking about the white matter signals, he is well aware that you are paying attention to your tests and results. He might be more open with you now. Sometimes neuros don't realize that most patients want to know everything possible.

I didn't need an EMG - I flunked all my neurological exam tests. Hopefully other members will share their EMG experiences.

By the way, did your neurological exam show any deficits (coordination and strength, nerve sensation, reflexes, balance, etc)?

[fullonmonet]

Hello KoKo,

Yeah it seems to be that he is still in the diagnosing phase but from the tone of the meeting and how he left things before mentioning the other tests it seemed like an end of the road, contact your endocrinologist type of meeting.

I have the EMG on the 11th so I am looking forward to get more results but some people said its painful so kind of worried about that lol.

The neurologist just called me to check on me about my heart rate and I told him that its down and then I mentioned the white matter signals. He said they can come from vasculitis and lyme disease and migraines. He said I definitely dont have vasculities and since I dont have migraines the only thing left to look at is lyme. He said the signals dont look like MS. I asked about the number and he at first said 5-6 and then he said wait im looking at your MRI now and its actually 12. He then said its common for people to have and to not to worry. I mentioned how my old MRI report said a few white matter signals and this new report says multiple and he chalked it up to just the reporting system. I don't know 12 does not seem like a few to me and this makes me wish even more that I had my MRI from El Paso.

I think the reason I am discouraged because I was expecting a spine MRI to be next to see if there are any lesions there but I guess I will have to wait in the meantime.

[KoKo]

Hello fullonmonet

To appease me he has ordered an EMG, has done more bloodwork (lyme, rheumatoid factor, and some vitamin deficiencies), and prescribed me Gabapentin.

He has ordered an EMG and bloodwork, and prescribed me Gabapentin.

This tells me that your neuro is still in the diagnosing/testing stage, looking to rule-out or rule-in various disorders.

What does the EMG actually test for?

EMG:

Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.

Motor neurons transmit electrical signals that cause muscles to contract. An EMG uses tiny devices called electrodes to translate these signals into graphs, sounds or numerical values that are then interpreted by a specialist.

During a needle EMG, a needle electrode inserted directly into a muscle records the electrical activity in that muscle.

A nerve conduction study, another part of an EMG, uses electrode stickers applied to the skin (surface electrodes) to measure the speed and strength of signals traveling between two or more points.

https://www.mayoclinic.org/tests-pro...t/pac-20393913

he did not mention the multiple irregular foci of white matter signals

Could you call and ask your neuro that question?

What does an MRI show?

The precise image produced by MRI gives the neurologist clear evidence of scar tissue in the deep parts of the brain or spinal cord that is characteristic of MS.

However, abnormal spots on the brain MRI can be caused by other conditions, so these images must be interpreted by the neurologist in light of all information about the patient. Similar lesions can be seen in elderly people or people with migraine headaches or high blood pressure. Confirming a diagnosis of MS and ruling out other possible causes requires expert interpretation of the MRI scan.

https://my.clevelandclinic.org/healt...s/test-details

[fullonmonet]

Hello everyone,

I unfortunately had a lackluster trip to the neurologist that has left me discouraged. Vitals are taken whenever someone arrives to Neurology for their appointment and so mine were taken. My heartbeat was 140 and my blood pressure was about 150/100. I was not concerned in the slightest because they are always high when I go to the doctor. (I suffer from social anxiety and anxiety when I drive). I had EKGs done in the past because of it and my heart is normal and my heartbeat and blood pressure are normal when I am at rest and not in an environment that I perceive as stressful. But today, the techs and nurses were very alarmed.
The neurologist came in and instead of discussing my scans and/or showing me my MRI he kept talking about my heart and if I had chest pains or shortness of breath. I said no and then he asked about my symptoms. I told him about the burning and itching scalp, arms, and legs and how it feels like i have a hot band around my arm sometimes. I also tell him about how my vision has seemed to be getting blurry. He asked if I had migraines I said no and he then said "well I really think it is the high prolactin you have and/or your pituitary tumor." I told him "the endocrinologist said my prolactin is only slightly elevated and said both the tumor and prolactin has no effect on my symptoms." He still wasn't convinced and then proceeds to use GOOGLE to search some symptoms up. I was shocked but not that shocked since this is a military hospital. I asked about a spine MRI and finally brought up MS. He said not likely that I had MS on my spine because I do not have trouble walking and do not have trouble using the bathroom. I almost brought up the irregular white matter signals that the radiologist mentioned but didn't because I felt like it was useless. To appease me he has ordered an EMG, has done more bloodwork (lyme, rheumatoid factor, and some vitamin deficiencies), and prescribed me Gabapentin. I left feeling very sad and cried in the car. My husband said I was valid in feeling how I did because he was also getting angry because he could tell the neurologist was trying to get me out of the door and seemed stressed. (the visit lasted about 10 min with half of those min waiting while he went to check labs).

So to recap: I did not get to see my MRI nor did he explain what any of my results meant besides saying "yup you have a pituitary tumor" something that we all knew, he did not mention the multiple irregular foci of white matter signals, He has ordered an EMG and bloodwork, and prescribed me Gabapentin.

So my questions are: is it normal to not be shown your MRI? I have already submitted paperwork to get a disc of my MRI because at this point I am unsure I want to be seen by him again. What does the EMG actually test for? and how is being on Gabapentin? I am worried about possible side effects.

[Mamabug]

Yeah; I also don't know how to interpret your results. Did your doctor explain them to you in a way that makes them understandable? Are you feeling as if you are any closer to a diagnosis?

[KoKo]

So the differences between the two reports seems to be the number of white matter signals (which i don't know what that means so if anyone has any idea could you let me know)

White matter signal changes, on an MRI image of the brain, would mean that there are either darker or lighter areas, as detected by MRI, on the white matter of the brain.

In other words, these areas look different than the normal white matter areas of the brain.

[fullonmonet]

hi Koko,

In my previous MRI report (which as a refresher was almost 2 years ago, at a different hospital, and i do not have the actual MRI on a disc) it mentions "a few subcentimeter foci of signal abnormality randomly distributed in the supratentorial white matter, which is a non specific finding" and it found my 3mm pituitary tumor.

So the differences between the two reports seems to be the number of white matter signals (which i don't know what that means so if anyone has any idea could you let me know), my tumor is now 4mm, and i have a maxillary cyst.

[KoKo]

Thank you for sharing your results, fullonmonet.

IMPRESSION: Multiple scattered subcortical and deep white matter signal changes with differential including but not limited to complicated migraines, sequela of prior trauma, infection, vasculitis or Lyme disease.

I don't know how to interpret these very well, but this info is new since your previous MRI, is that right? (previous was related to pituitary issues?)