Aa
Tests all negative, how do I get ANY kind of diagnosis?
Hello there, As I read through the various posts, I seen myself over and over and over again. I was diagnosed with Transverse Myelitis 8 years ago and have continued to have worsening symptoms since that time. It initially started out as Paralysis below the waist and I was able to walk again after a brief hospitalization and steroids. I continued with Neurology Clinic for 5 more years along with Pain Management Clinic for the whole 8 years. Last year, Neurology discharged me from their clinic(due to overcrowding). When they discharged me from the clinic, there was no direction as to what to do or where to follow up. Six months later I had another attack(3rd time) and was briefly hospitalized again with instructions to return to Neurology for a follow-up. I did just that and when I went to the clinic, I was told by a Nurse Practioner (Harbor UCLA, Torrance, CA) that I was a "complete waste of time". I filed a complaint on her comment and did NOT get to see a doctor. After waiting more than 8 months since that time, they finally made her apologize and said that the doctor doesn't think that my new symptoms are Neurological in nature. (I have ascending numbness on my right side, blurred vision, complete loss of bowel and bladder fuction and left arm weakness.) and I often choke on food due to a large thyroid goiter. I do not know how he can determine that these symptoms are non-Neurological in nature when he has not even seen me. Apparently, I finally have an appt. in 4 month(after more than a year since discharge). I have gotten worse since that time and yet, I still have no answers. I have classic and non-classic symptoms of MS and since TM is normally not a condition that attacks the body this many times, I am not sure what to do. I am not in a position to get a 2nd opinion and yet these doctors don't seem to care. NO ONE SHOULD EVER HEAR FROM A DOCTOR OR NURSE THAT THEY ARE A COMPLETE WASTE OF TIME!!!! I care enough about my health to inquire and I would just love to know once and for all what is going on with my body. I am on a dangerous dose of Neurontin(5,400 mg daily), 125 mg of Amitriptine, Colace(to keep my bowels from backing up on me), MS Contin several times daily, along with Vicodin several times daily. I have just been given Levothyroxine for a large thyroid goiter. My chart has different pages stating TM with Degenerative Disk Disease, Spondylolysis, Degenerative Osteo-Arthritis. No one doctor ever writes down the same thing and since I go to a public clinic and see a different doctor each time, I have no way to find out. Is there ANY ONE TEST or SERIES OF TESTS that I can ask the doctor for that might give me some kind of answer or definitive diagnosis of why I continue to have new and worsening symptoms? Thanks! I really appreciate yoru imput.
Thank you so very much to each of you for your help and comments. These answers seem to give me a little more hope and help me to research some more so that I can pass the info. to my doctor. I go to Harbor UCLA in Torrance, CA which is a Public-type of clinic where they see so many patients, they don't really take the time to research. They are just overworked and it's hard I guess. I also find that many patients are just fine with going to see a doctor and getting meds and they are content. I am however, dedicated to finding out exactly what is going on with my body so that I can improve the condition of my health. I do what I can but I can only do so much when I really don't have a full picture of what is going on. Again, I thank each of you and appreciate you as we all try to find a cure or help for these various conditins. Thanks!
hang in there try to help yourself as much as you can.
drs!! why r there some like this!! but there is . hugs!! tick
drs!! why r there some like this!! but there is . hugs!! tick
I meant to say TM can occur as a secondary disease to Lupus, Sjorden's etc. so if you do have re occuring TM you need to checked again for MS, have a LP done, brain MRI etc., blood panel for lupus etc. a full bloodwork up.
My new symptoms seem to be migraine not the TM but sometimes I am not convinced it's not getting worse but with half my symptoms migraine and some of the others are prob just old ones rearing their head again but at least I am being monitored and even if he tells me that I am stable I know he will say come back if you think you are getting worse.
I wish I could send my neuro to everyone on this forum as he listens, cares, and helps and answers... and monitors.
Udkas.
My new symptoms seem to be migraine not the TM but sometimes I am not convinced it's not getting worse but with half my symptoms migraine and some of the others are prob just old ones rearing their head again but at least I am being monitored and even if he tells me that I am stable I know he will say come back if you think you are getting worse.
I wish I could send my neuro to everyone on this forum as he listens, cares, and helps and answers... and monitors.
Udkas.
Hi there,
I am sorry that there are people in this world that can treat you this way! There are doctors and medical people out there who will care and do care, but obviously they are difficult to find. Sorry!!
I have been diagnosed with Transverse Myelitis too and I have big issues with pain, it seems unfortunately to be part of the course with TM.
My neurologist sees me every 3 to 6mths depending on how i feel although at the moment he thinks my TM is stable. They believe my TM has reoccured although MRI was normal. I have been seeing this neuro for a bit over two years, he has done 3 lots of MRI in the last 2 years and and I have another one incl. brain for March next year and he also did a LP.
TM can reoccur but it is usually very rare and usually reoccurs to a secondary thing like lupus or something like that but it can reoccur with no know underlying cause.
Often when TM does reoccur MS should be considered and obviously a brain MRI should be taken as TM can often be the beginnings of MS.
According to my neuro you can flare up your TM to be as bad as it was when you had your original attack if you get tired, stressed, hot, sick etc. but if you have new symptoms it SHOULD BE CHECKED. Also your blurry eyes could be migraine as migraine can be common with TM but it also could be optic neuritis, you need to see the eye specialist and get checked for ON.
NMO or Devic's Disease is another variant of TM/MS where you get lesions in your spinal cord and optic neuritis, you can have a blood test and get checked for this too.
Best of luck, thinking of you,
Udkas.
I am sorry that there are people in this world that can treat you this way! There are doctors and medical people out there who will care and do care, but obviously they are difficult to find. Sorry!!
I have been diagnosed with Transverse Myelitis too and I have big issues with pain, it seems unfortunately to be part of the course with TM.
My neurologist sees me every 3 to 6mths depending on how i feel although at the moment he thinks my TM is stable. They believe my TM has reoccured although MRI was normal. I have been seeing this neuro for a bit over two years, he has done 3 lots of MRI in the last 2 years and and I have another one incl. brain for March next year and he also did a LP.
TM can reoccur but it is usually very rare and usually reoccurs to a secondary thing like lupus or something like that but it can reoccur with no know underlying cause.
Often when TM does reoccur MS should be considered and obviously a brain MRI should be taken as TM can often be the beginnings of MS.
According to my neuro you can flare up your TM to be as bad as it was when you had your original attack if you get tired, stressed, hot, sick etc. but if you have new symptoms it SHOULD BE CHECKED. Also your blurry eyes could be migraine as migraine can be common with TM but it also could be optic neuritis, you need to see the eye specialist and get checked for ON.
NMO or Devic's Disease is another variant of TM/MS where you get lesions in your spinal cord and optic neuritis, you can have a blood test and get checked for this too.
Best of luck, thinking of you,
Udkas.
Why can anyone be so heartless as to tell someone that they're a waste of time--especially out of the medical community when their job is to care for people? It makes no sense to me. She should consider changing professions if she can't handle seeing sick people. Not knowing what's wrong with a person can be difficult, but taking it out on that person who's suffering is inexcusable.
Unfortunately, there's no one test to rule in or out MS. MS is a clinical diagnosis. There's many mimics. Hypothyroidism is one; however, I have MS and hypothyroidism. The neurological symptoms didn't go away after taking Synthroid. Certainly the TM can be a mimic, but often times it can be linked to MS as well. The other conditions you mentioned about your spine, could also muddy the waters; however, I do think there's some things you may want to discuss with your doctor (a new and improved doctor, though).
Here's some questions that pop into my head as far as things to explore:
1) Was MS protocol used with your MRI?
2) What was the strength of the MRI machine . . . a 1.5T is the least strength recommended. Stronger machines are better.
3) Did you have an MRI of the brain with the spine?
4) Was the MRI with and without contrast?
5) Have you had an LP?
6) Have you been to an opthamologist or neuro-opthamologist? With blurred vision, ON needs to be ruled out. An opthamologist can help get you closer to getting a diagnosis.
7). Have you had a VEP (visual evoked potential test)? Not doing well with this test could point more to MS.
8) Have you seen an MS specialist?
I'm so sorry you're having all of these problems. I'd get into someone that will care about you and get these issues taken care ASAP.
Take care,
Deb
Unfortunately, there's no one test to rule in or out MS. MS is a clinical diagnosis. There's many mimics. Hypothyroidism is one; however, I have MS and hypothyroidism. The neurological symptoms didn't go away after taking Synthroid. Certainly the TM can be a mimic, but often times it can be linked to MS as well. The other conditions you mentioned about your spine, could also muddy the waters; however, I do think there's some things you may want to discuss with your doctor (a new and improved doctor, though).
Here's some questions that pop into my head as far as things to explore:
1) Was MS protocol used with your MRI?
2) What was the strength of the MRI machine . . . a 1.5T is the least strength recommended. Stronger machines are better.
3) Did you have an MRI of the brain with the spine?
4) Was the MRI with and without contrast?
5) Have you had an LP?
6) Have you been to an opthamologist or neuro-opthamologist? With blurred vision, ON needs to be ruled out. An opthamologist can help get you closer to getting a diagnosis.
7). Have you had a VEP (visual evoked potential test)? Not doing well with this test could point more to MS.
8) Have you seen an MS specialist?
I'm so sorry you're having all of these problems. I'd get into someone that will care about you and get these issues taken care ASAP.
Take care,
Deb
Hello and welcome to the MedHelp MS Forum. I am very sorry that you are having such a difficult time. Stick with us and perhaps others can be of help too.
There are tests that can be done to diagnose MS. Please read the Health Pages located in the upper right hand corner/yellow icon. Take the time to read the McDonald criteria used for diagnosing MS. Having TM will muddy the waters if you were to have MS also. I really hope that you find answers for the question you ask "why I continue to have new and worsening symptoms?" This question should be answered to you fully. I suppose it could be the TM solely, but there might be other factors as well. TM can relapse, but how often? I do not know.
You are obviously having terrible pain Are you still being treated through the Pain Management Center? If not, see if UCLA can schedule you soon. If you are able to travel, would the Los Angeles UCLA be able to follow you more closely? You need a team of doctors. Do you have a primary physician who can assist you?
I am too tired to make sense but I do hope you can get answers and relief soon.
There are tests that can be done to diagnose MS. Please read the Health Pages located in the upper right hand corner/yellow icon. Take the time to read the McDonald criteria used for diagnosing MS. Having TM will muddy the waters if you were to have MS also. I really hope that you find answers for the question you ask "why I continue to have new and worsening symptoms?" This question should be answered to you fully. I suppose it could be the TM solely, but there might be other factors as well. TM can relapse, but how often? I do not know.
You are obviously having terrible pain Are you still being treated through the Pain Management Center? If not, see if UCLA can schedule you soon. If you are able to travel, would the Los Angeles UCLA be able to follow you more closely? You need a team of doctors. Do you have a primary physician who can assist you?
I am too tired to make sense but I do hope you can get answers and relief soon.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
