Aa
Possibility of MS
Good Afternoon All,
I am new to this site but didn't really know where else to turn. It would be most helpful if someone could help me with a few questions as I feel like I am at the end of my rope and very frightened. For the past 4 years I have had symptoms that are almost exactly like some posted on this site. Over the past 3 years I have been to the Mayo Clinic, had appts. with 3 different Neurologists and all findings were inconclusive until now.
My symptoms in the past consist of 4 different episodes of numbness and tingling in the left arm and leg along with extreme fatiguing. My left limbs were especially frightening as each time I encountered a flare (approx 2-3 mos),my limbs became weaker and weaker almost a heaviness feeling with any type of leg exercise. I use to teach spinning classes but had to stop as I was feeling too week and didn't have enough energy to teach the classes any longer.
My symptoms subsided in mid-2007 and I began to feel much better. However, I became pregnant in December but miscarried in February. Not too long after the miscarriage, I became very sick with a horrible virus that put me down for 2 days. It seemed to settle in the back of my head and took about 3 weeks to diminish. Immediately after that I experience dizziness or vertigo beginning in April that lasted through June. Concerned, I sought the help of an ENT but he said their was absolutely nothing wrong with my inner ear but was fearful that I might have demylination of the Cervical Spine. In July, my neck began to feel very thick and achy along with numbness in my tongue which has affected my speech. No longer, am I able to speak without slurring which is very straining on my tongue muscles. This has gotten worse over the last month along with the return of weak left limbs. Along with this, the left side of my face has become numb as well.
I saw my Neurologist on July 30 but he didn't see anything abnormal with my exam or MRI. I have had two Brain MRIs, one done approx. 3mos ago, the other in 2006. He said with the comparison that there was no change and no abnormalities. He did suggest a spinal tap but I am very fearful of the risks involved with the procedure.
To give you an idea of the tests performed in the past:
MRI: 2 of the Brain, Thoracic, Cervical Spine
Evoked Potential
EMG, nerve conduction tests (twice)
Skin Biopsy
Countless bloodwork
Here is where I am confused.....I made an appt. with another Neurologist for next week and wanted to gather all past reports from the other two doctors. I picked up the reports today and was very puzzled to read what the latest report stated and am very, very scared. In the report, the Neurologist states:
DATA: She had a recently performed brain MRI with contrast. I reviewed the images. There were a couple of small, insignificant subcortical white matter lesions. There was no abnormal enhancement. The ventricular system in the right side of the brain was slightly smaller than that on the left.
IMPRESSION:
Balance symptoms. It is not clear what to make of these. This is in a patient with also unexplained left sided numbness. The diagnosis of MS had been entertained previously. The previous Neurologist performed visual evoked potentials which were normal. The previous Neurologist had also discussed with the patient a spinal tap and elected at that time not to perform it, suspecting a low yield. I spoke to Susan about spinal tap testing. I told her that this would be a reasonable choice. If normal, it would not exclude MS. but would significantly lessen the likelihood. If abnormal, given her symptoms and MRI findings, would provide strong support for diagnosing MS. Given her relatively normal MRI and her relatively benign course, it is not clear what sort of treatment course we would want to pursue if we diagnosed MS.
My apologies for the lengthiness. However, I am confused as he never told me about the lesions on the MRI or any other findings that might have been questionable. Therefore, I have been in tears after reading this report.
Reading this report has absolutely devastated me and would like to have a few opinions from some of you if possible. I have also entertained the idea that I might have ALS because of the the tongue and weakening neck issues.
Thank you for your time,
Susanne
I am new to this site but didn't really know where else to turn. It would be most helpful if someone could help me with a few questions as I feel like I am at the end of my rope and very frightened. For the past 4 years I have had symptoms that are almost exactly like some posted on this site. Over the past 3 years I have been to the Mayo Clinic, had appts. with 3 different Neurologists and all findings were inconclusive until now.
My symptoms in the past consist of 4 different episodes of numbness and tingling in the left arm and leg along with extreme fatiguing. My left limbs were especially frightening as each time I encountered a flare (approx 2-3 mos),my limbs became weaker and weaker almost a heaviness feeling with any type of leg exercise. I use to teach spinning classes but had to stop as I was feeling too week and didn't have enough energy to teach the classes any longer.
My symptoms subsided in mid-2007 and I began to feel much better. However, I became pregnant in December but miscarried in February. Not too long after the miscarriage, I became very sick with a horrible virus that put me down for 2 days. It seemed to settle in the back of my head and took about 3 weeks to diminish. Immediately after that I experience dizziness or vertigo beginning in April that lasted through June. Concerned, I sought the help of an ENT but he said their was absolutely nothing wrong with my inner ear but was fearful that I might have demylination of the Cervical Spine. In July, my neck began to feel very thick and achy along with numbness in my tongue which has affected my speech. No longer, am I able to speak without slurring which is very straining on my tongue muscles. This has gotten worse over the last month along with the return of weak left limbs. Along with this, the left side of my face has become numb as well.
I saw my Neurologist on July 30 but he didn't see anything abnormal with my exam or MRI. I have had two Brain MRIs, one done approx. 3mos ago, the other in 2006. He said with the comparison that there was no change and no abnormalities. He did suggest a spinal tap but I am very fearful of the risks involved with the procedure.
To give you an idea of the tests performed in the past:
MRI: 2 of the Brain, Thoracic, Cervical Spine
Evoked Potential
EMG, nerve conduction tests (twice)
Skin Biopsy
Countless bloodwork
Here is where I am confused.....I made an appt. with another Neurologist for next week and wanted to gather all past reports from the other two doctors. I picked up the reports today and was very puzzled to read what the latest report stated and am very, very scared. In the report, the Neurologist states:
DATA: She had a recently performed brain MRI with contrast. I reviewed the images. There were a couple of small, insignificant subcortical white matter lesions. There was no abnormal enhancement. The ventricular system in the right side of the brain was slightly smaller than that on the left.
IMPRESSION:
Balance symptoms. It is not clear what to make of these. This is in a patient with also unexplained left sided numbness. The diagnosis of MS had been entertained previously. The previous Neurologist performed visual evoked potentials which were normal. The previous Neurologist had also discussed with the patient a spinal tap and elected at that time not to perform it, suspecting a low yield. I spoke to Susan about spinal tap testing. I told her that this would be a reasonable choice. If normal, it would not exclude MS. but would significantly lessen the likelihood. If abnormal, given her symptoms and MRI findings, would provide strong support for diagnosing MS. Given her relatively normal MRI and her relatively benign course, it is not clear what sort of treatment course we would want to pursue if we diagnosed MS.
My apologies for the lengthiness. However, I am confused as he never told me about the lesions on the MRI or any other findings that might have been questionable. Therefore, I have been in tears after reading this report.
Reading this report has absolutely devastated me and would like to have a few opinions from some of you if possible. I have also entertained the idea that I might have ALS because of the the tongue and weakening neck issues.
Thank you for your time,
Susanne
I just finished reading the information on the health pages that you recommended, very interesting. Also, I will definitely let the Neurologist know that I would like to look into Speech Pathology. I still can't believe that the other Neurologist didn't hear anything differently.
I guess it was a good thing for me to see someone else at this point.
I will keep you posted but in the meantime please send any info you think might be useful for me to ask for my appt. next week. My list is ready but there is always a chance that I could be missing something.
Thank you so much,
Susanne
I guess it was a good thing for me to see someone else at this point.
I will keep you posted but in the meantime please send any info you think might be useful for me to ask for my appt. next week. My list is ready but there is always a chance that I could be missing something.
Thank you so much,
Susanne
I cannot thank you enough for the insight and information to research. Yes, I think I am more angry than ever that my Neurologist did not share this information with me considering the symptoms I have had for over 3 years now. To answer your question about the Neuro exams, yes every single one has come out normal. I never had the Bibinski signs or hyper reflex with one side only. Each doctor thought that my strength was quite good. Which of course was even more frustrating.
Of course, I am trying to understand why the information about the lesions was not shared. Perhaps as you stated, they were not significant enough to discuss. However, I agree with you in that I should have at least known of any abnormalities with my MRI. It is most troubling when knowing that this particular Neurologist is an MS specialist and known as one of the best in the valley.
I have cried so hard for the last couple of nights although I am trying my best to accept this disease. Yesterday, I read a book titled, "Living With Multiple Sclerosis" and it has helped some but also reminds me of what is ahead. My appt. with the Neuro is on the 9th and hopefully this will go well.
Now, I will look into the info you have shared and hopefully this will get me through for the next few days.
Thank you so much for your time and information, I will let you know what comes of the appt. next week.
oxox Susanne
Of course, I am trying to understand why the information about the lesions was not shared. Perhaps as you stated, they were not significant enough to discuss. However, I agree with you in that I should have at least known of any abnormalities with my MRI. It is most troubling when knowing that this particular Neurologist is an MS specialist and known as one of the best in the valley.
I have cried so hard for the last couple of nights although I am trying my best to accept this disease. Yesterday, I read a book titled, "Living With Multiple Sclerosis" and it has helped some but also reminds me of what is ahead. My appt. with the Neuro is on the 9th and hopefully this will go well.
Now, I will look into the info you have shared and hopefully this will get me through for the next few days.
Thank you so much for your time and information, I will let you know what comes of the appt. next week.
oxox Susanne
Just to say not to be afraid of the LP.
I see that Quix has explained it all relly well anyway but thought I would throw in my tuppence worth.
I was sent for an LP in May this year, despite being dx 14 years ago after an MRI she thought the LP was necessary to confirm the dx before prescribing DMDs.
I was dreading it and had a few sleepless nights.
It was absolutely fine, I didn't feel it at all and hardly had any after effects, just a bit of a headache for a few days but nothing bad. I was sensible though about lying down as much as possible.
I hope Shelley's LP is going well - today isn't it?
I bet she will be on here soon telling you that it is nothing to worry about.
Anyway I'm sorry you are going through this and hope it all gets resolved soon.
Mandy
I see that Quix has explained it all relly well anyway but thought I would throw in my tuppence worth.
I was sent for an LP in May this year, despite being dx 14 years ago after an MRI she thought the LP was necessary to confirm the dx before prescribing DMDs.
I was dreading it and had a few sleepless nights.
It was absolutely fine, I didn't feel it at all and hardly had any after effects, just a bit of a headache for a few days but nothing bad. I was sensible though about lying down as much as possible.
I hope Shelley's LP is going well - today isn't it?
I bet she will be on here soon telling you that it is nothing to worry about.
Anyway I'm sorry you are going through this and hope it all gets resolved soon.
Mandy
Oh, my!! It is clear why you landed here! Welcome to our little santuary of sanity and haven for those with MS and those with very suggestive symptoms, but no diagnosis. I am Quix, the official Den Mother of the site and unofficial MD. I was not a neurologist and left practice many years ago, but I am trying to learn about this disease and how to diagnose and treat it. I hope you find a good place for information, support, guidance, commiseration and comraderie.
Let me see. I do have some questions. You have had several episodes of this left-sided tingling and weakness. Do you know if, during the episodes, was your neuro exam abnormal? Especially, did any of the doctors ever find that your reflexes on that side were more brisk or hyperactive than the right side? How long do the episodes last?
It was unconscionable that your neurologist would know that MS has been considered and not tell you that there were abnormalities on the MRI. Now, I know that doctors are hesitant to talk about benign abnormalities, because some people fixate on them and never again feel healthy. But, that is not a decision (IMO) for the doctor to make. In this day of people's interest in their own medical care and records, it is foreseeable that you would find out that these lesions were there - as you did.
And I'm sure that you feel completely betrayed and blindsided. The doctor here is committing a cardinal sin in my opinion. Any lesions on an MRI MUST be evaluated "in light of the reason it was done." This means that if they went looking for lesions - AND THEY FOUND SOME - they need to be considered as related to your symptoms. Could your lesions be benign and insignificant?. Of course, they might be, but that should never, NEVER be the first thought. That was done to me and helped delay my diagnosis for 2 years.
Officially, a lesion needs to be at least 4mm in size to "qualify" for official status as an MS lesion. Does that mean that all MS lesions are 4mm or larger. Absolutely not! Many are invisible, as the better specialists will admit. Some are huge. And they can be any size in between.
If they are considering a spinal tap, then they are considering MS. So many people are worried about the spinal tap and feel it has many consequences. The only real consequence is the occasional severe headache. Thousands of spinal taps are done every day in this country. I, myself, have done close to 1000. Complications beyond the headache are rare. The vast majority do not get the headache. The myths about paralysis are just that - myths. Infection is very rare. We can discuss this more if you wish.
I encourage you to read several of the Health Pages. One of these that you might get something out of is the one on the McDoanld Criteria, which are loosely the rules of diagnosing MS. What is most important is the history and physcial. If you have two or more episodes of symptoms suggesting of a dymyelinating attack (and you do if your symptoms lasted more than a day) and if they have found abnormalities on your exams, like hyperreflexia (brisk reflexes), a positive Babinski, abnormal eye movements during your dizzy episodes, etc., then you fulfill the first two of the criteria for MS. The next very important criterion is that all other reasonable causes have been ruled out. This may or may not have been done. Certainly you have had some of themdone.
Finally, the MRI is looked at. It can provide supplemental evidence and your two lesions "may" be enough for that. Or it can provide hard evidence, and I don't think it sounds like what they saw fulfills that.
If those 4 criteria aren't enough, they start looking at other supplementary evidence. This would be like the evoked potentials. Which ones did you have?
The EMG, skin biopsy, and blood work were done to rule out other diseases. That they are normal is indirect evidence in favor of MS.
Finally, you are worried about ALS. This would not be in my consideration at all. I have several reasons for this. The first, is that by the very nature of ALS, it does not have relapses and improvements. Once there is weakness it NEVER improves. It might stabilize for a while, but it does not improve. Second, ALS is purely a motor disease. It does not have paresthesias (your tinglings). Third, the twitching is not consistent with ALS. Twitching in ALS is a very, very late phenomenon. It occurs only in the muscles which have already had a significant amount of wasting away. If your muscles haven't wasted, the twitching (tho annoying) is not important. I would feel comfortable saying there is NO evidence you might have ALS.
You are in another episode of the weakness and now have the swallowing difficulties and the speech difficulties. I find it hard to believe that your neuro exam is normal. How thoroughly does your neurologist test you? Mine does a head to toe exam with every visit. It takes 30 or 40 minutes and exhausts me. With your speech and swallowing problems I would have the neurologist (or your pcp) request a Speech Pathology evaluation to be done ASAP. This can provide the kind of positive findings that you might need.
Finally, can MS occur with a "normal" MRI? Well, first we know that your MRI isn't normal, but was called normal. I recommend that you read the Health Page on "How Can a Person with MS Have a Negative MRI?" Even the National MS Society states that 5% of people with MS have a negative MRI. This is 1 on 20! It is certainly not never.
I don't know what your final diagnosis will be. But, I wanted to give you a few ideas on how to begin thinking about what you are going through. I think you need to get copies of all the medical records that there on regarding these episodes, from the Mayo, your own doctor, the neuros, the ENT and copis of all the testing. People here have all sorts of recommendations about this. We all also know that you don't "want" MS - or anything else. But, it is obvious to you (if not to your doctor) that something is terribly wrong and getting worse. You want answers, a name to the enemy. You are normal in wanting that.
I do not understand how your neurologist can say that you are having a very "benign" course. It sounds to me like your life is currently at a standstill! This is not benign! You may, indeed, have a benign-looking MRI. MS is a diagnosis of the history and physical finding. It is not an MRI diagnosis .
Also, read, "So your doctor thinks you might have MS. What Now?" and "How to be your own Best Avocate."
I hope some of this has helped. Welcome again. We await your answers.
Quix
Let me see. I do have some questions. You have had several episodes of this left-sided tingling and weakness. Do you know if, during the episodes, was your neuro exam abnormal? Especially, did any of the doctors ever find that your reflexes on that side were more brisk or hyperactive than the right side? How long do the episodes last?
It was unconscionable that your neurologist would know that MS has been considered and not tell you that there were abnormalities on the MRI. Now, I know that doctors are hesitant to talk about benign abnormalities, because some people fixate on them and never again feel healthy. But, that is not a decision (IMO) for the doctor to make. In this day of people's interest in their own medical care and records, it is foreseeable that you would find out that these lesions were there - as you did.
And I'm sure that you feel completely betrayed and blindsided. The doctor here is committing a cardinal sin in my opinion. Any lesions on an MRI MUST be evaluated "in light of the reason it was done." This means that if they went looking for lesions - AND THEY FOUND SOME - they need to be considered as related to your symptoms. Could your lesions be benign and insignificant?. Of course, they might be, but that should never, NEVER be the first thought. That was done to me and helped delay my diagnosis for 2 years.
Officially, a lesion needs to be at least 4mm in size to "qualify" for official status as an MS lesion. Does that mean that all MS lesions are 4mm or larger. Absolutely not! Many are invisible, as the better specialists will admit. Some are huge. And they can be any size in between.
If they are considering a spinal tap, then they are considering MS. So many people are worried about the spinal tap and feel it has many consequences. The only real consequence is the occasional severe headache. Thousands of spinal taps are done every day in this country. I, myself, have done close to 1000. Complications beyond the headache are rare. The vast majority do not get the headache. The myths about paralysis are just that - myths. Infection is very rare. We can discuss this more if you wish.
I encourage you to read several of the Health Pages. One of these that you might get something out of is the one on the McDoanld Criteria, which are loosely the rules of diagnosing MS. What is most important is the history and physcial. If you have two or more episodes of symptoms suggesting of a dymyelinating attack (and you do if your symptoms lasted more than a day) and if they have found abnormalities on your exams, like hyperreflexia (brisk reflexes), a positive Babinski, abnormal eye movements during your dizzy episodes, etc., then you fulfill the first two of the criteria for MS. The next very important criterion is that all other reasonable causes have been ruled out. This may or may not have been done. Certainly you have had some of themdone.
Finally, the MRI is looked at. It can provide supplemental evidence and your two lesions "may" be enough for that. Or it can provide hard evidence, and I don't think it sounds like what they saw fulfills that.
If those 4 criteria aren't enough, they start looking at other supplementary evidence. This would be like the evoked potentials. Which ones did you have?
The EMG, skin biopsy, and blood work were done to rule out other diseases. That they are normal is indirect evidence in favor of MS.
Finally, you are worried about ALS. This would not be in my consideration at all. I have several reasons for this. The first, is that by the very nature of ALS, it does not have relapses and improvements. Once there is weakness it NEVER improves. It might stabilize for a while, but it does not improve. Second, ALS is purely a motor disease. It does not have paresthesias (your tinglings). Third, the twitching is not consistent with ALS. Twitching in ALS is a very, very late phenomenon. It occurs only in the muscles which have already had a significant amount of wasting away. If your muscles haven't wasted, the twitching (tho annoying) is not important. I would feel comfortable saying there is NO evidence you might have ALS.
You are in another episode of the weakness and now have the swallowing difficulties and the speech difficulties. I find it hard to believe that your neuro exam is normal. How thoroughly does your neurologist test you? Mine does a head to toe exam with every visit. It takes 30 or 40 minutes and exhausts me. With your speech and swallowing problems I would have the neurologist (or your pcp) request a Speech Pathology evaluation to be done ASAP. This can provide the kind of positive findings that you might need.
Finally, can MS occur with a "normal" MRI? Well, first we know that your MRI isn't normal, but was called normal. I recommend that you read the Health Page on "How Can a Person with MS Have a Negative MRI?" Even the National MS Society states that 5% of people with MS have a negative MRI. This is 1 on 20! It is certainly not never.
I don't know what your final diagnosis will be. But, I wanted to give you a few ideas on how to begin thinking about what you are going through. I think you need to get copies of all the medical records that there on regarding these episodes, from the Mayo, your own doctor, the neuros, the ENT and copis of all the testing. People here have all sorts of recommendations about this. We all also know that you don't "want" MS - or anything else. But, it is obvious to you (if not to your doctor) that something is terribly wrong and getting worse. You want answers, a name to the enemy. You are normal in wanting that.
I do not understand how your neurologist can say that you are having a very "benign" course. It sounds to me like your life is currently at a standstill! This is not benign! You may, indeed, have a benign-looking MRI. MS is a diagnosis of the history and physical finding. It is not an MRI diagnosis .
Also, read, "So your doctor thinks you might have MS. What Now?" and "How to be your own Best Avocate."
I hope some of this has helped. Welcome again. We await your answers.
Quix
I cannot thank all of you enough for your responses. I have been on the MS society site to find a local chapter also. However, the overwhelming support from all of you means a lot to me. My husband has been wonderful also but I know he is having a hard time with this as well and found him in tears last week.
Elaine here are some answers to your questions. My Lyme disease test was negative. Also, I not only had my Thyroid tested multiple times but also had an ultrasound of it a month ago and everything was normal. The TSH, antibodies all normal. Yes to your question about my legs. In between flares they seem to bounce back to normal regarding strength but I always feel a slight drag with the left but nothing to the eye of others. The EMG also normal. Thank you for your support.
Shelly, thank you for your support also, will you please let me know how the LP goes tomorrow? Please let me know if there is anything I can do on my end to help. I am still very fearful that ALS might be a consideration as well but right now I am just trying to get through the shock of it all without falling apart.
Fondly,
Susanne
Elaine here are some answers to your questions. My Lyme disease test was negative. Also, I not only had my Thyroid tested multiple times but also had an ultrasound of it a month ago and everything was normal. The TSH, antibodies all normal. Yes to your question about my legs. In between flares they seem to bounce back to normal regarding strength but I always feel a slight drag with the left but nothing to the eye of others. The EMG also normal. Thank you for your support.
Shelly, thank you for your support also, will you please let me know how the LP goes tomorrow? Please let me know if there is anything I can do on my end to help. I am still very fearful that ALS might be a consideration as well but right now I am just trying to get through the shock of it all without falling apart.
Fondly,
Susanne
Hello and welcome to the forum!! I was wondering if you have the results of your two EMG;s? Also, have you ever had a "Western Blot" test for Lyme disease? Have you had thyroid blood work like TSH, Thyroid antibodies?
In between your flares, do your legs return to normal strength or do they remain weak?
We will all try and help you as well as give you emotional support. Welcome.
Elaine
In between your flares, do your legs return to normal strength or do they remain weak?
We will all try and help you as well as give you emotional support. Welcome.
Elaine
I just wanted to say HI and welcome and offer my support to you! I'm sorry you're going through all of this but to make the trip a little easier, you're in the right place on this forum. : ) Everyone here is very supportive and helpful and loving. I'm in what they call 'limbo land' also, and can relate to everything you said. I'm finally going to have a LP tomorrow, and like you, I was very afraid to have it. I finally decided it'd be better to go through with it and hopefully know what is causing all of my symptoms.
Sorry to hear you're going through all of this. I hope you get answers soon!
Hugs..and prayers...
Shelley : )
Sorry to hear you're going through all of this. I hope you get answers soon!
Hugs..and prayers...
Shelley : )
Hi,
You've come to the right place for support. Have a look through the health pages on the top right of the page, loads of good stuff there.
It really is bad that you found out about all this from a report, rather than a doctor explaining things to you. Happens too often. It happened to me (I have no diagnosed MS). I was told my spine MRI was normal and when I got the report it said my back was covered with tumours. Like you I was devastated. Really information without explanation is not good enough.
You need to get back to your neurologist and get a full explanation of what you have found. That is their job.
I'm sure others here will help you more directly with the ms related questions. Undiagnosed myself I do not feel qualified to comment.
You will learn a lot here, such as the strenght of the mri machine being important, ms mimics, types and courses of the illness etc.
Get the full picture of your suspected diagnoses from your doctors. And make sure that for any other tests, now or in the past or future, you get copies of the results. Never be afraid to ask questions. By your doctors witholding information, maybe not to worry you, they have now worried you more!
Save the tears for now. You don't have all the information yet. My horrifying tumours were subsequently dismissed, and now again being looked at more seriously, but the distress I went through just seing the report with no explanation was uneceessary. Remember radiologists only report on observations and to the level of their ability. They do not know your full history, sometimes get things wrong, other times miss things, and even ocassionally point out the wrong thing. Always get your referring doctor to analyze the findings themselves. They know you better than the radiologist.
You will be made to feel very welcome here and make lots of friends. So you've landed on the right spot.
Keep us informed of how you get on,
wish
You've come to the right place for support. Have a look through the health pages on the top right of the page, loads of good stuff there.
It really is bad that you found out about all this from a report, rather than a doctor explaining things to you. Happens too often. It happened to me (I have no diagnosed MS). I was told my spine MRI was normal and when I got the report it said my back was covered with tumours. Like you I was devastated. Really information without explanation is not good enough.
You need to get back to your neurologist and get a full explanation of what you have found. That is their job.
I'm sure others here will help you more directly with the ms related questions. Undiagnosed myself I do not feel qualified to comment.
You will learn a lot here, such as the strenght of the mri machine being important, ms mimics, types and courses of the illness etc.
Get the full picture of your suspected diagnoses from your doctors. And make sure that for any other tests, now or in the past or future, you get copies of the results. Never be afraid to ask questions. By your doctors witholding information, maybe not to worry you, they have now worried you more!
Save the tears for now. You don't have all the information yet. My horrifying tumours were subsequently dismissed, and now again being looked at more seriously, but the distress I went through just seing the report with no explanation was uneceessary. Remember radiologists only report on observations and to the level of their ability. They do not know your full history, sometimes get things wrong, other times miss things, and even ocassionally point out the wrong thing. Always get your referring doctor to analyze the findings themselves. They know you better than the radiologist.
You will be made to feel very welcome here and make lots of friends. So you've landed on the right spot.
Keep us informed of how you get on,
wish
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