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Ongoing years of uncertainty

Hi everyone. I was diagnosed with Fibro 8 years ago after extensive testing. I first presented with leg pain and tingling. My PCP first ordered a ultrasound to make sure there were no clots.  Negative. MRI of brain, negative. Lots of blood work such as ANA, Lyme, RF, vitamin levels, etc. all normal. That was when I received my Fibro diagnosis. Went on to see a Rheumatologist who just took my PCPs word for it and treated me for Fibro. I have also had sever insomnia for years at this point. As time went by, I started to lose feeling in my feet and legs. I don't like to classify it as numbness bit moreso a loss of feeling. I have been very clumsy, as well as having real cognitive issues such as, word recall, forgetting what I am saying mid sentence, forgetting what I have done the day before, stuttering on occasion. I was finally sent for a nerve conduction test. I was told by the doc who performed it that perineal neuropathy was good but he thought I had small fiber neuropathy. My Rheumy told me it was normal. While he was performing the test he could tell that my toes had very little feeling. So she put my on Gabapentin, didn't really do much of anything. Also I have this feeling in my feet on and off that I can only describe as a menthol like feeling. I can not distinguish whether they feel cold or hot. Strange. I also get muscle spasms in my legs on and off. These things can happen for a while, stop for a while, and return. A few times I lost strength in my legs and crumbled to the floor but that only happened twice. I get dizziness on and off as well. I have also had numbness and tingling in my hands on and off too. My loss of feeling in my legs is constant though. I go to get a pedicure and I barely feel a thing. I miss the times when it actually felt good to have a leg and foot massage. Now I don't even feel
It but I can tell it's worse in my right leg than my left. I have also had a squeezing smeaation in my abdomen. Feels sometimes like a girdle is being squeezed. And my ribs feel tight. I also get what I can only describe as like stabbing pains through my legs here and there. It feels as though I've been stabbed quickly and then it will stop. I also get what I would like to describe as toe freeze. Where my toes will curl and freeze up causing pain. It will last a few minutes than subside. I also have problems focusing on occasion. And have to re read things a few times before I can grasp it. So 2 years ago when I moved back to Jersey I started to see a new Rheumatologist and he won't label me with Fibro. He thinks my symptoms are more like MS. So I went to the neuro yet again (the first one pretty much said its all I. My head) and they did an MRI of the brain and cervical spine. They said it was normal. And yes it was done with contrast, flair, etc. but I was dizzy and she was specifically looking for inner ear problems. Anyhow, normal. Although one image does have a bright spot that I have always been curious about. But wasn't mentioned in the report. Also, it was done with T1 and no MS protocol. So now my Rheaumy wants to start all over again with some blood work and an X-ray of my lower back and hips to make sure there isn't arthritis. He wants to start ruling things out again. I like him much more than anyone I have seen. He seems to actually care. He also told me that my paperwork said I have peripheral neuropathy. Which I found strange since they told me it was negative. I am very sorry if this seems so jumbled I'm just trying to remember everything that has gone on in the last 8 years. Oh I should mention I have had bladder issues for years. Many UTIs, always microscopic blood in the irons which my urologist said he may want to investigate in the future. Had a kidney stone a few months ago which I know isn't really related but they also found that o have low uric acid levels as well. My bladder issues have been, sometimes slow to start, not fully emptying, some pain and frequent urination as well although I feel like I'm never fully emptying. I also have IBS which isn't fun at all. I'm sorry for such a long post, I'm just so tired of all these things and still feel like I'm in limbo for years. Thanks so much for reading and taking your time to do so. Any advice would be greatly appreciated.
Jerilyn
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Avatar universal
I also have had tremors in my hands, which I forgot
to mention. It lasted a while a few years ago but hasn't come back since, luckily.
Helpful - 0
Avatar universal
Also, very bad fatigue. It was so bad years back I couldn't even fathom getting up to take a shower. It was horrific. Now  still fatigued but I have learned to fight through it. But I'm just always tired. And the heat makes it 100x worse. I can't bare the summer. I'm feeling bad that I keep coming back to list other things but they are so real and it's hard to remember everything when I was originally posting. Thanks for your patience.
Helpful - 0
Avatar universal
Someone just recommended me that I get a T3 MRI as T1.5 doesn't show small lesions or small problems.
I also read that 5% of MS doesn't have lesions on the brain, great right?

I'm no expert by any means, but maybe someone will know something more. The T3 MRI has been the best advice I have gotten so far, so I plan to see if I can get one in the future.

Helpful - 0
1831849 tn?1383228392

Hi Jerilyn -  Welcome to the group. Many of our friends have visual issues that making read large blocks of textChallenging, if not impossible. I've taken the liberty of breaking up your post a bit.

Kyle

Hi everyone. I was diagnosed with Fibro 8 years ago after extensive testing. I first presented with leg pain and tingling. My PCP first ordered a ultrasound to make sure there were no clots.  Negative. MRI of brain, negative. Lots of blood work such as ANA, Lyme, RF, vitamin levels, etc. all normal. That was when I received my Fibro diagnosis. Went on to see a Rheumatologist who just took my PCPs word for it and treated me for Fibro.

I have also had sever insomnia for years at this point. As time went by, I started to lose feeling in my feet and legs. I don't like to classify it as numbness bit moreso a loss of feeling. I have been very clumsy, as well as having real cognitive issues such as, word recall, forgetting what I am saying mid sentence, forgetting what I have done the day before, stuttering on occasion.

I was finally sent for a nerve conduction test. I was told by the doc who performed it that perineal neuropathy was good but he thought I had small fiber neuropathy. My Rheumy told me it was normal. While he was performing the test he could tell that my toes had very little feeling. So she put my on Gabapentin, didn't really do much of anything.

Also I have this feeling in my feet on and off that I can only describe as a menthol like feeling. I can not distinguish whether they feel cold or hot. Strange. I also get muscle spasms in my legs on and off. These things can happen for a while, stop for a while, and return. A few times I lost strength in my legs and crumbled to the floor but that only happened twice. I get dizziness on and off as well. I have also had numbness and tingling in my hands on and off too.

My loss of feeling in my legs is constant though. I go to get a pedicure and I barely feel a thing. I miss the times when it actually felt good to have a leg and foot massage. Now I don't even feel It but I can tell it's worse in my right leg than my left. I have also had a squeezing smeaation in my abdomen. Feels sometimes like a girdle is being squeezed. And my ribs feel tight. I also get what I can only describe as like stabbing pains through my legs here and there. It feels as though I've been stabbed quickly and then it will stop.

I also get what I would like to describe as toe freeze. Where my toes will curl and freeze up causing pain. It will last a few minutes than subside. I also have problems focusing on occasion. And have to re read things a few times before I can grasp it. So 2 years ago when I moved back to Jersey I started to see a new Rheumatologist and he won't label me with Fibro. He thinks my symptoms are more like MS.

So I went to the neuro yet again (the first one pretty much said its all I. My head) and they did an MRI of the brain and cervical spine. They said it was normal. And yes it was done with contrast, flair, etc. but I was dizzy and she was specifically looking for inner ear problems. Anyhow, normal. Although one image does have a bright spot that I have always been curious about. But wasn't mentioned in the report. Also, it was done with T1 and no MS protocol.

So now my Rheaumy wants to start all over again with some blood work and an X-ray of my lower back and hips to make sure there isn't arthritis. He wants to start ruling things out again. I like him much more than anyone I have seen. He seems to actually care. He also told me that my paperwork said I have peripheral neuropathy. Which I found strange since they told me it was negative.

I am very sorry if this seems so jumbled I'm just trying to remember everything that has gone on in the last 8 years. Oh I should mention I have had bladder issues for years. Many UTIs, always microscopic blood in the irons which my urologist said he may want to investigate in the future. Had a kidney stone a few months ago which I know isn't really related but they also found that o have low uric acid levels as well. My bladder issues have been, sometimes slow to start, not fully emptying, some pain and frequent urination as well although I feel like I'm never fully emptying.

I also have IBS which isn't fun at all. I'm sorry for such a long post, I'm just so tired of all these things and still feel like I'm in limbo for years. Thanks so much for reading and taking your time to do so. Any advice would be greatly appreciated.
Jerilyn

Helpful - 0
667078 tn?1316000935
The only way to figure out if it MS would be to go to a MS Specialist. I do not know much about Fibro accept it does have many of the symptoms of MS and it is a serious illness to have. I do not know what you have. It is hard to get a MS diagnosis if there are no lesions. People do get diagnosed with negative MRIs but you have to be followed by a neurologist for a long time.

Most neurologists follow you over time even with an abnormal MRI. Also having so many things wrong tends to be to complicated for most doctors and they say oh it has to be in your head. I would just bring up the most important 5-10. You could also have several things going on. I have several diseases which are not MS. My GP used to think I was neurotic until I was diagnosed with several serious illnesses.

I believe something is wrong I just do not know what it is.

Alex
Helpful - 0
Avatar universal
Thanks for your replies. It's not that everything is going on at once. It comes and goes and sometimes i feel ok for a while and then things come back. My rheumatologist seems really interested I finding out what is going on. I told him my MRIs have been normal and then how can it be Ms? His reply ' that unfortunately doesn't mean anything. You can still have it.'didn't expect to hear that from him, but at least he seems very wiling to find out what's going on. The neurologists I have seen so far seem to not care much at all.
Helpful - 0
Avatar universal
I don't have advice but your story sounds almost identical to mine except my bad leg is my left and I get random muscle twitching in a lot of different places.

I have fibro but my military doctor told me she thought it was a BS diagnosis. I wasn't sure until I had more nerve related things pop up, trigeminal neuralgia and nerve damage in my left ear.

I started thinking MS after that. I recently told my new neurologist my suspicion and she said I don't have the traditional signs they look for with MS. This is a doctor at a VA hospital, I'm not sure what signs she means and I am waiting on results of new MRIs and an emg. My last MRI had one bright spot on it but the doc said it was probably nothing, this was at the same time all my symptoms started.

I hope you can find out what's really going on, it is really frustrating to not know.
Helpful - 0
667078 tn?1316000935
Understand that the only doctor who can diagnose MS is a neurologist so you might need to find another one. Sometimes they are not dismissive. The way they think is it is not MS until they have all the evidence it is MS. They seem dismissive. Also when you start with a neurologist you start at day one. It does not matter to most what other doctors you have seen. They make up there minds on their own. I call them the judges of the medical world. They want there own tests and evidence. They usually watch over time. My first MRI showed MS and I was not diagnosed for two years. Sometimes some one gets a diagnosis quickly but that is the exception.

Alex
Helpful - 0
Avatar universal
I'm sorry you're going through something similar. I really hope they find out what is going on too. I also hope you don't go years trying to find out what it is , like so many others. Maybe your MRI will give some answers.
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Avatar universal
Alex, I know a neurologist has to diagnose me, but my Rheumy wants to at least see if he can find out anything himself, which I appreciate. So far I haven't been able to find a neurologist that really wants to help, but as soon as we start ruling other things out again, I will try and find another. I at least feel comfortable with him at least trying to rule out other things right now. That is at least helpful. He wants to start from the beginning because he is very unsure about my Fibro diagnosis at this point and he doesn't wanna label me until he can be certain, which I appreciate.

I am just so tired of test after test and still there is no certainty. But I know that's the way it goes, but it's very frustrating.
Helpful - 0
Avatar universal
Hi Jerilyn, has anyone given you a nerve concution study? That may need to be ordered by a neuro but it would indicate whether ornot you have peripheral neuropathy.

I am sure your rheum could give you a referral to a neuro who will be more inclined to take you seriously and a referral from a rheum may also have more credit.

BTW, I too have IBS and you are right, it is awful.

Corrie
Helpful - 0
Avatar universal
Corrie, yes I did have one done. The doc who administered it said he thinks I have small fiber neuropathy. When my old Rheumy got the report she said it was negative. But when I was in my new rheumy's office on Friday he said from what he can see from the report I have peripheral neuropathy. I was surprised being that I was told it was negative. I see him again in a month so I'm going to look at that report. Thanks for your reply :)
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Avatar universal
P.S I'm sorry you deal with the IBS as well. Mine is IBS-D which is awful. But the Cymbalta I just started seems to help with it, luckily.
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Avatar universal
IBS-D for me too. Haven't taken anything for it in a while though so it is good to know that there are meds available.

Meds for it are on my list but I have a couple of other issues that I want to deal with first.

Take care and good luck with your appointment,

C.
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Avatar universal
Thank you!
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