Aa
In Limboland and going crazy
I will not be seeing a neuro dr until May 8th and I feel as though I am losing it. I am on my 4th week of not feeling well. Numbness, tingling, joint aches, muscle weakness. I am tired but my the overwhelming fatigue has gone. By the time evening rolls around I have worked myself into a frenzy of crying, being sad and thinking that all I wish was I knew what was wrong with me and praying that I wake up tomorrow feeling normal. I have had a mri on the brain that showed multiple white lesion and with my symptons my regular dr is leaning toward MS. Would ms symptons come on this strong and last this long? before this episode I never really had any problems. I am scared that if this isn't ms what is it then.... I know that more then likely when I see the neuro he probably won't be able to tell me a whole lot. how do I overcome these depressing feelings? Also has anyone ever heard of being on a medication for a few years and then all of a sudden begin to have side effects from the drug? Reason I am asking is I have been taking lisinopril for high blood pressure for 2 years now. I found a site about side effects of medications and when I looked at lisinopril there were many people on there writing about side effects that they are having being on that drug and their symptons are alot like the ones I am having right now with the tingling and so on. Am I grasping at straws thinking it could be my meds? Any thoughts would be appreciated.
Hi, and welcome to the forum. You slid in here in the middle of another discussion and you clearly deserve your own separate thread and some thorough discussion of what you are going through - which is a lot!
Would you copy and paste this question to a new discussion? Just copy your post to clipboard and click on "Post a Question" on this page. Paste it in and we can all get to know you. Otherwise you could be hidden inside this one.
I am a physician with MS, so I know, not only what you are fearing, but also what you are going through right now and it must be harrowing.
I look forward to seeing your post.
Quix, MD.
Would you copy and paste this question to a new discussion? Just copy your post to clipboard and click on "Post a Question" on this page. Paste it in and we can all get to know you. Otherwise you could be hidden inside this one.
I am a physician with MS, so I know, not only what you are fearing, but also what you are going through right now and it must be harrowing.
I look forward to seeing your post.
Quix, MD.
I am in limbo also, I have been feeling "different" for the last month. I am 24 years old, in my first year of medical school and engaged to be married next year. As you see, there is a lot on, my plate. My symptoms initally started with numbness in my right arm then on to my entire right side. This was what prompted my doctors visit. They did an MRI and found a 5mm periventricular lesion on the left side of my brain, consistent with the numbness. Since then I have had a TEE to check for patent foramen ovale. There was no PFO and all blood tests have been normal. While and since I have been doing these tests and going back and forward to the doctor, I have experienced tingling and numbness on my right and left side, muscle twitches all over, weakness in both legs and arms, lightheadedness, insomnia and inability to remain sleep as a result of numbness. I don’t have a neurologist appointment until May 19, and the possibility of MS is killing me. And unfortunately, the next two weeks are major exam weeks for me and my fiancée is just as young as I am and has never had to deal with serious issues so it can be frustrating trying to get support from him. Also, I have been having bouts of depression and anxiety with uncontrollable crying. Any suggestions as to what could be going on with me or ways to help with symptoms?
MRI report
Findings: There is mild age appropriate cortical atrophy. The ventricles are normal size. There are multiple punctate foci of high signal intensity which appear to be aligned in the periventricular and subcortical white matter, best noted on FLAIR series 134120 image 16. The largest lesion is in the left posterior frontal white matter on image 16 and measures 0.6 cm x 0.8 cm. Although given the age of 52 years, findings could be secondary to deep white matter small vessel ischemic change, given the appearance on the MR exam and the nonspecific findings on the clinical history, possibility of multiple sclerosis cannot be excluded. Clinical follow up recommended. The lesions noted do not enhance with contrast. The region around the foramen magnum is normal. The brainstem and posterior fossa are inact. There is no abnormal in the brachium pontis. Contrast enhancement is normal.
Impression: Moderate deep white matter changes which appear to align in the periventricular spaces and given this finding the possibility of multiple sclerosis could not be excluded. Differential would include deep white matter small vessel ischemic change. Correlation with clinical history recommended
Findings: There is mild age appropriate cortical atrophy. The ventricles are normal size. There are multiple punctate foci of high signal intensity which appear to be aligned in the periventricular and subcortical white matter, best noted on FLAIR series 134120 image 16. The largest lesion is in the left posterior frontal white matter on image 16 and measures 0.6 cm x 0.8 cm. Although given the age of 52 years, findings could be secondary to deep white matter small vessel ischemic change, given the appearance on the MR exam and the nonspecific findings on the clinical history, possibility of multiple sclerosis cannot be excluded. Clinical follow up recommended. The lesions noted do not enhance with contrast. The region around the foramen magnum is normal. The brainstem and posterior fossa are inact. There is no abnormal in the brachium pontis. Contrast enhancement is normal.
Impression: Moderate deep white matter changes which appear to align in the periventricular spaces and given this finding the possibility of multiple sclerosis could not be excluded. Differential would include deep white matter small vessel ischemic change. Correlation with clinical history recommended
Hi, if I may jump in here? I read several of your posts, even on the other forums. My gut feeling is that you do not have MS, though I would like to know more about the white matter lesions on the MRI. Could you get a copy of the radiology report and let us see what it actually says?
I'm sorry you are feeling so badly. It is worse when you have an overlying anxiety as you do. That makes all of the things that you are feeling muddy. The tingling in your arms and hands, the lump in your throat, the rising of tearful anxiety as the day progresses and you are more tired. All of these things "can" be due to anxiety, but can be due to other things also.
I also read one of your posts where you shouldered the blame for slipping in a panic attack. NOT AT ALL. Anxiety disorders and panic attacks are real neurological states and events. The body gets set in a permanent state of arrousal and fear. A panic attack can start and you are helpless in it, though you can learn some powerful tricks to shut them down. But, know that you are not causing them.
The lump in your throat is an extremely common problem related to anxiety. It even has a medical name, but I won't use it because I don't like it.
Now, that said, yes, some of the things you are feeling can be seen in MS and yes, they can act this way. So, you need to be evaluated for that (I think slim) possibility. In the meantime I strongly urge you to get treated for the anxiety. This is for a couple reasons. The first is that you need the help. The fears are destroying your quality of life. Even if you were already diagnosed with MS I would say the same thing. Anxiety/depression this strong needs some therapy. Please ask you PCP to help you out here and perhaps start some behavior-modifying therapy to deal with the panic attacks.
The second reason may even be the most important. As long as you are so anxious and emotional the neurologist is going to have a hard time sorting out what part of your symptoms is anxiety and what part is due to a different neurological problem. At the worst, the neuro may decide that it is all due to anxiety and dismiss you. So if you can show that you are attacking the anxiety part, the doctor will be more likely to take you seriously.
If the anxiety can come under control then we will see what symptoms remain.
I hope you see that 1) the anxiety is NOT YOUR FAULT, 2) it needs to be treated, 3) treatment will help you be more patient and feel better through the days that it will take to be evaluated for your brain lesions.
I hope this helps. And please get a copy of your MRI report.
Take care,
Quix
I'm sorry you are feeling so badly. It is worse when you have an overlying anxiety as you do. That makes all of the things that you are feeling muddy. The tingling in your arms and hands, the lump in your throat, the rising of tearful anxiety as the day progresses and you are more tired. All of these things "can" be due to anxiety, but can be due to other things also.
I also read one of your posts where you shouldered the blame for slipping in a panic attack. NOT AT ALL. Anxiety disorders and panic attacks are real neurological states and events. The body gets set in a permanent state of arrousal and fear. A panic attack can start and you are helpless in it, though you can learn some powerful tricks to shut them down. But, know that you are not causing them.
The lump in your throat is an extremely common problem related to anxiety. It even has a medical name, but I won't use it because I don't like it.
Now, that said, yes, some of the things you are feeling can be seen in MS and yes, they can act this way. So, you need to be evaluated for that (I think slim) possibility. In the meantime I strongly urge you to get treated for the anxiety. This is for a couple reasons. The first is that you need the help. The fears are destroying your quality of life. Even if you were already diagnosed with MS I would say the same thing. Anxiety/depression this strong needs some therapy. Please ask you PCP to help you out here and perhaps start some behavior-modifying therapy to deal with the panic attacks.
The second reason may even be the most important. As long as you are so anxious and emotional the neurologist is going to have a hard time sorting out what part of your symptoms is anxiety and what part is due to a different neurological problem. At the worst, the neuro may decide that it is all due to anxiety and dismiss you. So if you can show that you are attacking the anxiety part, the doctor will be more likely to take you seriously.
If the anxiety can come under control then we will see what symptoms remain.
I hope you see that 1) the anxiety is NOT YOUR FAULT, 2) it needs to be treated, 3) treatment will help you be more patient and feel better through the days that it will take to be evaluated for your brain lesions.
I hope this helps. And please get a copy of your MRI report.
Take care,
Quix
hi,
cant comment about the ms. But about the lisinopril, do you check your BP on a regular basis? It is always possible that a med for hypertension, its an ace-inhibitor, can cause hypotenstion. This could casue dizzy, fatigue, lightheaded. Monitor your BP so you know if you are on the right dose. Also Lisinopril can cause hyperkalemia if you have too much potassium in ur system, maybe salt sub. with potassium (if ur worried about your salt intake?), or foods with lots of potassium etc. Hyperkalemia (too much potassium) might cause fatigue, muscle weakness and tingling, nausea. Just a thought since u brought up side effects of meds. Tell ur md.
missy
cant comment about the ms. But about the lisinopril, do you check your BP on a regular basis? It is always possible that a med for hypertension, its an ace-inhibitor, can cause hypotenstion. This could casue dizzy, fatigue, lightheaded. Monitor your BP so you know if you are on the right dose. Also Lisinopril can cause hyperkalemia if you have too much potassium in ur system, maybe salt sub. with potassium (if ur worried about your salt intake?), or foods with lots of potassium etc. Hyperkalemia (too much potassium) might cause fatigue, muscle weakness and tingling, nausea. Just a thought since u brought up side effects of meds. Tell ur md.
missy
Ditto all comment. As for the meds and side effects. You definitely can develop side effects even after on a drug for a while. It's not a reason to think that's what it is - but it does happen. The body is always creating antibodies as it fights perceived threats and this process can go awry. That's why we develop food sensitivities after having eating them for years. The immune system can get overloaded, toxins can enter the system and antibodies are created that can attack the body's tissue that is similar to the toxin or even drug molecules previously not perceived as a threat. It's a complex system and I wouldn't pretend to understand it all, but because of having several autoimmune diseases, I'm making immunity a subject of research - it's enlightening to say the least.
I went through times after each diagnosis, when I tried to blame something I'd done, or something I'd taken for my symptoms. I tried to explain my diseases away, not wanting to have it be out of my control I think. I've been depressed, both from the loss of my former self, and from this new lack of control over how I felt. I empathize with you very much. Don't be hard on yourself. Listen to those who posted before me and make sure you stay connected to family and friends. I wish you well, and hope you find answers. It isn't always a quick process though, so I pray you have peace through the process.
Blessings, Jan
I went through times after each diagnosis, when I tried to blame something I'd done, or something I'd taken for my symptoms. I tried to explain my diseases away, not wanting to have it be out of my control I think. I've been depressed, both from the loss of my former self, and from this new lack of control over how I felt. I empathize with you very much. Don't be hard on yourself. Listen to those who posted before me and make sure you stay connected to family and friends. I wish you well, and hope you find answers. It isn't always a quick process though, so I pray you have peace through the process.
Blessings, Jan
Hi there,
I've been in limboland (lots of symptoms but no diagnosis) for over 14 months now, and I've found that this forum helped keep me from losing it.
I understand how you're feeling, and I'm sorry that you have to go through it. If learning more about the possibilities and getting support from the great people here aren't enough, then see a good therapist to help you through this. I have a therapist I connected with through a Pain Clinic, and know that I can call and see her if I get overwhelmed.
I learned some coping skills in Pain Management Classes that work with any chronic condition, like meditation, for instance.
I've had my PCP tell me that I wouldn't develop side effects from medications that I'd been taking for a long time, but I don't know if that is true for all medications. It's definitely something to discuss with your doctor.
May 8th is getting closer. I hope that reading the Health Pages and some posts here on the forum will help make it easier to get through this time. Hang in there!
Take care,
Kathy
I've been in limboland (lots of symptoms but no diagnosis) for over 14 months now, and I've found that this forum helped keep me from losing it.
I understand how you're feeling, and I'm sorry that you have to go through it. If learning more about the possibilities and getting support from the great people here aren't enough, then see a good therapist to help you through this. I have a therapist I connected with through a Pain Clinic, and know that I can call and see her if I get overwhelmed.
I learned some coping skills in Pain Management Classes that work with any chronic condition, like meditation, for instance.
I've had my PCP tell me that I wouldn't develop side effects from medications that I'd been taking for a long time, but I don't know if that is true for all medications. It's definitely something to discuss with your doctor.
May 8th is getting closer. I hope that reading the Health Pages and some posts here on the forum will help make it easier to get through this time. Hang in there!
Take care,
Kathy
I'm sorry you are feeling so depressed and overwhelmed. The others before me gave you some good information. I think we all have gotten depressed at one point or another while waiting and wondering what was going to happen next to our bodies and waiting endlessly for test results.
You have a place where you can share all of those feelings with people who have gone through the same thing.
As for your lisinopril for causing your symptoms. I was told that anyone can develop a reaction to any drug at any time even if they have taken it before. Keep in mind that the list of side effects covers everything and may or may not apply to your individual case - only a doctor can make that decision.
But, feel free to discuss how you're feeling and we will support you on your journey through Limboland.
Hang in there, May 8 isn't too far away. Lulu's suggestion to read the Health pages is a very good idea.
Take care,
Ren
You have a place where you can share all of those feelings with people who have gone through the same thing.
As for your lisinopril for causing your symptoms. I was told that anyone can develop a reaction to any drug at any time even if they have taken it before. Keep in mind that the list of side effects covers everything and may or may not apply to your individual case - only a doctor can make that decision.
But, feel free to discuss how you're feeling and we will support you on your journey through Limboland.
Hang in there, May 8 isn't too far away. Lulu's suggestion to read the Health pages is a very good idea.
Take care,
Ren
Hi Cheri, Welcome to the MS forum here atMedHelp. This is a well-educated community of MS advocates - patients and caregivers. Quite a few of our members are in limbo, like you
There is a lot of very good information in our health pages, located via the yellow icon on the upper right side of this page. Please take your time over the next two weeks and read all you can absorb. I would recommend you read it in small bits and pieces or you will really be overwhelmed.
Depression is very common for people who are ill but have no answers - and depression is also common for people with MS. The fact that you are depressed is certainly understandable. This can be a frightening disease to face.
Please know that there are lots of ways that the neurologists can help - be sure to speak to the doctor honestly about the difficult time your are having with this process. It is all part of your diagnosis process.
I hope we will see you around here while you wait and learn ....
my best,
Lulu
There is a lot of very good information in our health pages, located via the yellow icon on the upper right side of this page. Please take your time over the next two weeks and read all you can absorb. I would recommend you read it in small bits and pieces or you will really be overwhelmed.
Depression is very common for people who are ill but have no answers - and depression is also common for people with MS. The fact that you are depressed is certainly understandable. This can be a frightening disease to face.
Please know that there are lots of ways that the neurologists can help - be sure to speak to the doctor honestly about the difficult time your are having with this process. It is all part of your diagnosis process.
I hope we will see you around here while you wait and learn ....
my best,
Lulu
I got really depressed many times while in Limbo. I had to get professional help. I did not see how depressed I was. I felt so alone.
I do not know about your meds.
You are not alone. Many people have had similar feelings.
You might get your answers quickly or slowly, either way the forum is here. Hang in there.
Alex
I do not know about your meds.
You are not alone. Many people have had similar feelings.
You might get your answers quickly or slowly, either way the forum is here. Hang in there.
Alex
Thank you for responding and I do hope there is someone out there that can help me.
Cheri
Cheri
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