Weak, Sick, & Scared

Posted by dablues @dablues, Jan 10 5:07pm

I still have no idea what is wrong with me. Searching since November. Getting worse. Won't have an emg until the 14th but so much worse off now. Nausea, weak in the legs. Twitching, cramping in feet and off balance. Double vision. Don't know why no one could have diagnosed me by now. Two months later I know nothing! Appetite is good as I eat and nausea goes away for 10 minutes then back again. Lost some weight but have the flu. WBC is 3.7, Lymph%26.5, MONO%11.5, NEUT%60.9, BASO% 0.60, EOS%0.3, LYMP#, MCHC31.7, MCH 29.4, RDW 12.9, PLAT 291,. Those are some of the findinings in my blood work. Others not listed normal. I think ALS, or MS that is just my opinion, but am trying to act like I'm fine and happy. Hubby is in the hospital with flu, pneumonia, and Sepsis, so don't want to show him how bad I feel. He's 81 and I'm 78, Opthamologist today couldn't tell me much about the double vision. Still says Neuro should be handling it. Just sick of it all!

@deblues Welcome to connect where we are caring people and try to help we arent Dr.s so cant diagnose . Im so sorry to hear about how sick you are and trying to keep a happy face for your husband. Have you seen a neurologist ,endocrinologist,gastrologist just a few specialist that maybe able to help you . I think wil all your symptoms you should see a specialist . Let us know how you are doing . These are only a few suggestions I can give you . We care here and want to help if we can. Good luck

REPLY

I just seen your post and just want to give you some encouragement
It’s so hard to be suffering like you are and also have to be dealing with your husband in the hospital.
Hoping all will be well with him and you get answers for yourself also.

REPLY
@lioness

@deblues Welcome to connect where we are caring people and try to help we arent Dr.s so cant diagnose . Im so sorry to hear about how sick you are and trying to keep a happy face for your husband. Have you seen a neurologist ,endocrinologist,gastrologist just a few specialist that maybe able to help you . I think wil all your symptoms you should see a specialist . Let us know how you are doing . These are only a few suggestions I can give you . We care here and want to help if we can. Good luck

Jump to this post

I have a gastro doctor. had a colonoscopy, and endoscopy done. Neurologist did a brain scan, cervical spine scan, eeg and will be doing an emg on the 14th. Also have double vision along with what is going on. No answers. Haven't seen an endocrinologist. I do have a thyroid disorder. At a loss for how awful I feel and no one so far has found out anything.

REPLY
@martft4

I just seen your post and just want to give you some encouragement
It’s so hard to be suffering like you are and also have to be dealing with your husband in the hospital.
Hoping all will be well with him and you get answers for yourself also.

Jump to this post

Thank you. I'm really anxious and scared now. Sick of going through tests and not getting an answer. Am afraid the emg will be the answer by not sure.

REPLY
@dablues

I have a gastro doctor. had a colonoscopy, and endoscopy done. Neurologist did a brain scan, cervical spine scan, eeg and will be doing an emg on the 14th. Also have double vision along with what is going on. No answers. Haven't seen an endocrinologist. I do have a thyroid disorder. At a loss for how awful I feel and no one so far has found out anything.

Jump to this post

@deblues Sounds like you are taking control of your situation ,thats what we all need to do is advocate for ourselves. Look into a Endocrinologist some of it maybe hormonal and this Dr would find out . Good luck

REPLY

Hi @dablues, You are in a most challenging time. Is there family or someone who can help you shoulder some of this burden? Double vision is not normal. Tell your primary care doctor you are overwhelmed. Give your concerns to God each morning in prayer. Know that people care about you and your situation. Know that each day you are doing your best, that's all you can expect of yourself. Ask that your primary care doctor refer you to a Rheumatologist for evaluation .You have put things in motion, let them play out.
Build a support system around you, to take care of you. Ask for help in the social services department of the hospital, tell them of your situation, your concerns
and how to best handle some of these life altering events. I feel your concerns, there will not be immediate answers to some of your questions and that's OK. Your focus is only on today, not yesterday and not tomorrow. If focusing on today is too much, then only focus on whats in front of you each moment.
I hope to hear from you again. Keep us all posted.

REPLY
@phoenix0509

Hi @dablues, You are in a most challenging time. Is there family or someone who can help you shoulder some of this burden? Double vision is not normal. Tell your primary care doctor you are overwhelmed. Give your concerns to God each morning in prayer. Know that people care about you and your situation. Know that each day you are doing your best, that's all you can expect of yourself. Ask that your primary care doctor refer you to a Rheumatologist for evaluation .You have put things in motion, let them play out.
Build a support system around you, to take care of you. Ask for help in the social services department of the hospital, tell them of your situation, your concerns
and how to best handle some of these life altering events. I feel your concerns, there will not be immediate answers to some of your questions and that's OK. Your focus is only on today, not yesterday and not tomorrow. If focusing on today is too much, then only focus on whats in front of you each moment.
I hope to hear from you again. Keep us all posted.

Jump to this post

Wonderful advice from phoenix0509! Stress can precipitate illness. As a last resort, an Emergency Room visit might be an option. You are in my thoughts and prayers.

REPLY

Your symptoms are very similar to what mine have been for about 3 years. This all started from being diagnosed with Bell’s palsy in April 2017. I was left with a droopy eye and mouth. My double vision began about 5 months later. That lasted 9 months then seemed to go away. It returned 6 months later. I spent many months with ophthalmologists. Many tests and no diagnosis. Myasthenia Gravis was suspected but blood tests negative. A new Ophthalmologist diagnosed optical M G in th spring of 2019. When I became ill with bronchitis last summer, I was admitted to hospital and was told that 15% of people with normal blood tests for M G have this autoimmune disease. Flares are triggered by illness and your flu could be doing this.
See a neurologist and be checked. I am being treated and am having some relief.
Don’t give up. I pray that you and your husband have big improvements soon.

REPLY
@dablues

I have a gastro doctor. had a colonoscopy, and endoscopy done. Neurologist did a brain scan, cervical spine scan, eeg and will be doing an emg on the 14th. Also have double vision along with what is going on. No answers. Haven't seen an endocrinologist. I do have a thyroid disorder. At a loss for how awful I feel and no one so far has found out anything.

Jump to this post

Welcome @dablues . I’m so glad you’ve found MayoClinicConnect. As you can see, there are many people who care and want to help. It must be so difficult being sick and having your husband sick, also. Do you have any family nearby? Or good friends who could help set up some support for you? You might also want to contact the social workers/discharge planners at the hospital where your husband is. Explain that you cannot provide care until you find out what’s wrong with you. If he’s been in the hospital for minimum of 3 24hr periods, he should qualify for a 30 day Medicare stay in a rehabilitation center or nursing home. That should give you some time to concentrate on yourself. Will you try these suggestions and then let me know?

REPLY

@dablues
Some great replies to your post. .. they contain many great suggestions.

I want to ask: have you have fallen within the last year? Are you having headaches?

If you have a relative or good friend by your side it would be a great help to you. I know it can be hard to ask for help from those close to you.. you know they have their own problems, but sometimes you need to. You may actually be helping them by asking for help. A distraction from your own worries can be good sometimes.

I know how worried and stressed you are about your husband. The worry and stress can affect your own health. Be of comfort that others have him and you in their thoughts and prayers.

If you just want to talk.. I am here. You can always private message me.

ZeeGee

REPLY
@janyce

Your symptoms are very similar to what mine have been for about 3 years. This all started from being diagnosed with Bell’s palsy in April 2017. I was left with a droopy eye and mouth. My double vision began about 5 months later. That lasted 9 months then seemed to go away. It returned 6 months later. I spent many months with ophthalmologists. Many tests and no diagnosis. Myasthenia Gravis was suspected but blood tests negative. A new Ophthalmologist diagnosed optical M G in th spring of 2019. When I became ill with bronchitis last summer, I was admitted to hospital and was told that 15% of people with normal blood tests for M G have this autoimmune disease. Flares are triggered by illness and your flu could be doing this.
See a neurologist and be checked. I am being treated and am having some relief.
Don’t give up. I pray that you and your husband have big improvements soon.

Jump to this post

I have a neurologist but no one seems to help. Had to postpone the 14th of January for the EMG and now can't get one done until February. Nothing has changed for the better.

REPLY
@fourof5zs

@dablues
Some great replies to your post. .. they contain many great suggestions.

I want to ask: have you have fallen within the last year? Are you having headaches?

If you have a relative or good friend by your side it would be a great help to you. I know it can be hard to ask for help from those close to you.. you know they have their own problems, but sometimes you need to. You may actually be helping them by asking for help. A distraction from your own worries can be good sometimes.

I know how worried and stressed you are about your husband. The worry and stress can affect your own health. Be of comfort that others have him and you in their thoughts and prayers.

If you just want to talk.. I am here. You can always private message me.

ZeeGee

Jump to this post

Thank you! I haven't fallen and some headaches, not a lot.

REPLY

My Migraines are unbearable!! Neurologist had me on Botox Shots which helped. Haven’t had Botox Injections since May 2019. He retired. New Neuro. on aimovog. Not lasting. Cervical Dystonia. Optipical Nerve Block was a disaster! Seeing another new Neurologist next week. Terrible pain from Cervical Dystonia, too! Any suggestions? I’m desperate!! Thank you!!

Please Reply,
Eleanor

REPLY
@leawright11

My Migraines are unbearable!! Neurologist had me on Botox Shots which helped. Haven’t had Botox Injections since May 2019. He retired. New Neuro. on aimovog. Not lasting. Cervical Dystonia. Optipical Nerve Block was a disaster! Seeing another new Neurologist next week. Terrible pain from Cervical Dystonia, too! Any suggestions? I’m desperate!! Thank you!!

Please Reply,
Eleanor

Jump to this post

Hello @leawright11 , you might want to check out this discussion to see if there is something that might help you. https://connect.mayoclinic.org/discussion/chronic-migraine-relief-suggestions/ Since the aimovog is not helping you, have you returned to the neurologist and discussed this? I’ve asked our moderator to maybe move your post to the one discussing chronic pain, if that’s ok

REPLY
@dablues

I have a neurologist but no one seems to help. Had to postpone the 14th of January for the EMG and now can't get one done until February. Nothing has changed for the better.

Jump to this post

@dablues Have you had a chance to talk to the social workers at the hospital where your husband is. What have they said? Are they able to give you any support?

REPLY
Please login or register to post a reply.